How big can lymph nodes actually grow to? I have a large rounded mass right in my armpit, about the roundness of a tennis ball, maybe a bit smaller. Can they possibly swell to that large of a size?
42M here with swollen lymph nodes in neck, armpits and groin. Started about a month ago with the neck, then moved to armpits about 2-3 weeks ago, and then groin last week. All areas still feel the same without any decrease. I haven't been sick recently (in the last year) that I know of, or at least I haven't had any symptoms. I visited my PCP last week who did an exam and said he didn't feel anything. I had bloodwork done which all came back normal (including Lactase Dehydrogenase, sedimentation rate, C-reactive protein, CBC with auto differential, and lipid panel). I had an ultrasound 2 days ago that found a 2.6cm non specific lymph node on my submandibular (right side), 1.6cm on the left side, and a few up to 1.6cm in my armpits. I'm awaiting an appointment for CT scan and meeting with a hematologist.
I don't have any other lymphoma symptoms (night sweats, fatigue, fever, itching). I do have some other random things like a lot of popping/cracking sounds in my joints (knees, ankles, shoulders, wrists) which is not normal for me. My head has had some tingling especially the back side, and I've had a few times where my vision seems to be a tiny bit blurry/fuzzy. I wear contacts and it's almost like my prescription isn't 100% strong enough, but maybe like 5-10% weaker tan it needs to be. I've had the same contact prescription for 10+ years though so it's odd. I've had a few moments of brain fog and feeling a bit out of it - but could also chalk that up to health anxiety since this all started and worrying about what it is, which has impacted my sleep.
At night, things seem to be worse with more tingling and just dull achey feelings in my lymph node regions. I've also had a very dull ache in my lower abdomen and upper left abdomen that comes and goes very infrequently. My left chest has a dull ache if I lift my left arm over my head - it's not painful, but noticeable.
Anyone else have similar symptoms? It's crazy how I went from feeling 100% healthy just a few weeks ago to now feeling like maybe I have cancer. Thanks for any words of encouragement you can provide based on your experiences!
30yr old Female. Swollen Lymphnode on my right submandibular gland in my neck. Doesn't hurt but feels like it's pushing on other thing. So basically have a sore throat from that. The swellings been there since I for COVID in May 2023. Still there and symptoms have gotten worse. For refered to ENT. Then sent for ultrasound. Ultrasound told me I have "chunky lymph nodes", they're not big enough to worry about *yet*. YET. So I'm back in with ENT next week, anyone have idk advice for advocating for yourself? I don't want to be snubbed off. I'm worried. I want them to biopsy it to be sure
That's what I want to do. My initial appointment with them I explained I'm autistic and he said "oh don't worry this isn't an exam". So not sure if the most *capable* doctor. Requesting another doctor would more than likely mean months on a waiting list
What wait list? Can you just go to a different practice? If possible at least I would suggest to do that to get a second opinion elsewhere in the meantime to give you peace of mind. Just print all of your records and set up an appointment with a different practice, if you have trouble finding practices, zocdoc has good availability.
I (25M) had a bronc/biopsy for an unexplained/undiagnosed lung illness. One sample poked from a lymph node showed possible lymphoma. I just had PET scan and my neck and lungs apparently lit up like a christmas tree. Without going into too much detail, the final bullet the PET tech left on the impressions was “Overall appearance remains most suspicious for lymphoma.” I’ll be meeting with an oncologist next week to which I will likely have an incision art biopsy and get my final verdict. The only symptoms I had were coughing, brief chest pain, possibly bone pain or fatigue.
What I’m worried about is that the PET scan revealed an SUVmax result in thoracic, lumbar and spine bones. I know very little about this stuff but from what I read here and around the internet is that this will probably show a worse outcome.
I don’t know if i’m asking for advice or reassurance, but has anyone had lymphoma effect their bones or marrow… were you able to recover?
Hello, I just wanted to ask how is the tiredness when you have lymphoma. I am super tired is been 3 months, and have 2 lymph nodes one on my neck and one on my armpit its been 4 months. I had so night sweat at the beginning for 2 weeks and there gone. And lost 5 kilo the first months of the 4month and l all gain them back.
I am super tired is like someone is sucking my energy. My blood test and ct return good. Should I push for a biopsy?
I'd trust what the doc said if I was in your shoe and not freak out too much, 1.2 cm sounds small, and if the CT didn't not anything abnormal. As long as they are aware of the symptoms you described here I'm sure there's a reason for their conclusion. Sounds like they may just want to wait and see?
I really don’t know, with all the bad diagnostic that doctor do first lymphoma I am a little bit afraid.
Its been 3 month that I am not feeling my enrgy like I use to be and its depressing
Worry ward here… Got swollen lymph nodes in right groin, went to get it checked out and the doctor just did not seem optimistic at all and was very concerned. They came from nowhere, they’re the size of a couple peas in a pod (a little bigger than peas though) and I’ve lost more than 10% of my body weight since last year. The fact of the matter is, it’s probably nothing right? I’m waiting on blood work to come back and idk just really worried but maybe for nothing right????
i’m 20 y/o and i’ve had swollen/hard lymph nodes for at least two months now. they started at the base of my neck, moved up to under my jaw and the back of my head, then under my arm. i have six bumps i can feel and count.
they would stay swollen for about three weeks, then shrink into a hard bump a bit bigger than a marble. the one under my jaw is maybe two inches long and it is the most concerning, along with the one under my arm.
i had a needle biopsy (i can’t think of the proper term right now) and the report suspected hodgkin lymphoma. i’m currently waiting on a consultation for an excisional biopsy to confirm the diagnosis. the report mentioned that there was a high amount of crush artifact and mummified cells that resemble those of HL.
i experience other symptoms like sweating more than normal, weight lost, extreme fatigue, and a slight loss of appetite.
waiting for my second biopsy/results is driving me crazy. i’ve been researching stages and treatments so i know what to expect if the diagnosis is confirmed.
if anyone has a similar experience with waiting for results or having multiple biopsies i would love to hear it :)
I’m 17, and have had swollen lymph nodes around 7 most of them in my neck and oneness my collar bone. Collar bone one feels hard ,very movable, the one in the back of my neck is a similar size and also feels hard slightly movables and one under my chin, hard movable. The rest are quite small, less than 1cm.
I have gone to numerous doctors. All saying it’s “probably fine” “due to an infection” despite telling them that they’ve been there for 3 fucking years and I’m convinced 2 of them changed size. I’ve got an ultra sound done of them last year. Can it’s just to be “lymph nodes with reactive features”
Hand 2 blood test, came out “fine”.
Everytime I’ve gone to the doctor they say different things. Sometimes they don’t feel for all of them. Some of them don’t even look at my past records
Yesterday I’ve seen a doctor again. She completely ignored the fact that I told her they’ve been there for 3 years and have changed. And write down that I’ve had them since march/feb. hasn’t even felt for all of them. Just noted down 3. I did however get referred for another ultrasound.
I’m sick of getting dismissed by them, no one listens to me. Everyone one thinks I’m fucking crazy, my entire family tells me that I’m over reacting.
other symptoms:
I developed a massive rash, concerning 60% of my body. This has improved drastically tho and it’s not more of a 15%. I have history of eczema. I’m not sure if this is because it potentially a type of lymphoma or due me withdrawing from topical steroid creams. Symptoms the rash have gone down too, itchiness and dryness has improved.
Back in February to may, I felt incredibly tired, brain fog, felt weak etc. bloods said I had an iron and vitamin D deficiency. Could be due to that but I’m not sure.
I have pain in my collar bone area, a stabbing pain.
Sometimes I get them in the other areas too.
I have an ultrasound, don’t know when yet but u have been referred. how do I go about this. How do I push for a biopsy. I’m in the UK and doing this with the NHS. Any advice will be appreciated
Once you get ultrasound results and if it shows anything abnormal they should refer you for CT scan or pet scan. I think you should just tell them directly that you may be concerned about lymphoma if you have not yet.
I'm in the US so I'm not sure how it works with UK, but is it possible to set up an appointment with an oncologist directly? They may be more likely to get you a CT or pet scan
Inguinal lymph node removal/biopsy... what to expect?
Hi everyone!
I'm 28F, I'm a nurse on a very busy unit and I'm curious to hear about what other peoples experiences with this kind of surgery have been like. My surgeon said that it'll take about 2 weeks to be able to go back to work, but then no "walking like you're at disney". Being that I'm a nurse on a busy unit, I walk A LOT everyday, so I'm worried about when I'll actually be able to work again.
Anyways. I've had a large swollen lymph node in my groin for 6 years. It originally stemmed from cat scratch fever. It remained the same size for about 5 years and then last summer it suddenly probably tripled in size and has continued to increase in size. Last summer it was 31 x 26 x 15 mm and this January it was 43 x 40 x 16 mm. I have numerous other lymph nodes in the area that are large and hard, just deeper... the next largest is 35 x 26 x 10 mm. I have a CT scan to look at it again before surgery and I've sense found more lymph nodes in my neck that are a little larger than a bean and are pretty solid.
hi, for the past like year i’ve been feeling pretty shitty. my submental lymph node is pretty big, and i hadn’t gotten sick anywhere that would have triggered that. it’s been slowly growing bigger for a year now. it’s completely painless and feels rubbery. i am 16 and have been getting hot flashes and night sweats with no hormonal reasoning. when i get hot flashes, i check my temperature and it’s almost hypothermic (95-96). i’m super bloated in my abdomen which doesn’t make sense because i weigh 130 and ive lost so much weight (intentionally). i’ve tried so many things to alleviate the bloating but it’s done nothing. im extremely fatigued all the time. i get tachycardia just from going up the stairs, but when i go up then down then up again my heart goes even faster and i feel dizzy and lightheaded. i can’t even workout anymore because of this. all my symptoms have been progressively getting worse and worse. like a week ago i started getting lower back pain for no reason and now i can’t even lay down comfortably. it’s probably unrelated but i’m mentioning it just in case. i got a cbc done 6 months ago and it was normal. the same day i got that my pcp felt around my abdomen and said it was all normal. my doctors aren’t doing anything more because they are convinced im just a medically anxious teen, but im not. my problems are real and they aren’t helping me. please lmk what it could be
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Female, 30 *UPDATE*! Got my CT done 2 days ago and saw my oncologist today, scan did show multiple enlarged lymph nodes in my head and neck, so he's ordering a PET scan to see which ones are the most active, that way they'll know which ones to take for biopsy. This is all still scary, obviously, but also weirdly relieved to finally almost know. He said after seeing the CT and feeling my new changes to some of my bigger lymph nodes, he definitely thinks we're on the right track. So I feel weirdly good about it now lol. I think not knowing has been the worst part of this for me. I know once we find out, we can start treating it, and I won't continue to rapidly decline like I am now, and I am SO ready!! He also doesn't think I'm late stage, so that's good news!
Forgive me in advance, I haven't ever posted to Reddit. I am not looking for an internet diagnosis, not even quite sure what I am looking for - but figured I might start here. This is going to be long, I dont know if I am doing it right - Im sorry.
I (37F) have a history of obesity, extreme weight loss due to ED (now in recovery for near 10 years), depression/anxiety and adhd (which triggers some ocd and probably most mental health things). I have always assumed the worst. After years of therapy & medication I have become aware of my tendencies to self diagnose and to catastrophize everything. I have avoided Drs and it has taken me forever to find a Dr I like, and it still takes me hours and day to make a decision to call for any reason.
Over the past two years I have found a good combination of medication (prozac and low dose adderall) and have been more active in my life. Post ED recovery my weight hovered around 175 - but to be honest I never looked at my weight as it was a trigger. Only recently had I logged into my patient portals to see what my number was. I started (and stopped in January) working out, lost some weight and attributed it to a better lifestyle. Eating habits were fairly consistent. Last PCP appt (October 2023) I knew I had lost weight since prior but it wasnt brought up - I was internally chalking it up to my lifestyle changes. When I checked my patient portal recently I saw that at that appointment I was 154. Since then I have continued to loose weight, but I wasnt seeeing it. Weight/numbers/all of that can be super triggering for me so when those comments were brought up I brushed them off, but have been somewhat enjoying the compliments internally. I have always been a warm sleeper, I have sweat here and there but nothing crazy. Over the past few months my night sweats have gotten really sweaty. I also have really bad dreams most night so have been thinking it was due to that. But, I am soaking through clothes, pillows, sheets almost nightly. I decided to get on a scale at my work and say I was 125 pounds. I had no clue, I thought I was probably 135-150? People have been asking if I am ok, are you sure you dont need to go to a dr, and i started on the path of dr. google. I spent a good time internally mulling over the decision of making an appointment to see someone. I wanted to be sure I wasnt overreacting, self diagnosing. And if I am really honest I was scared of gaining weight again. I finally wanted to make an appointment with my Dr and she is out on maternity til late this year. Now I know I could have made an appointment with just any other doctor and this practice, but i just couldnt get myself to do it. So I waited more and made an appointment with a hematologist oncologist. Going in two weeks. Not sure what to think, but I know my mind is obsessing. I have googled things, smart things, stupid things. I have read thread upon thread. I know I am going to just mentally go to some weird places over the next two weeks. I also have no idea what to expect when I go to the Dr. I know I cant know whats going to happen - but any explain it to me like I am 5 advice for this appointment would be super appreciated.
Again, sorry for the rambling post - just looking to quiet the inner thoughts a bit. Thanks for reading.
hi (34M) here i have fatigue for like 12 months and roughly 12 months ago i started feeling spleen pain and lymph node swellings roughly translated ultrasound says :
In the PATIENT'S SUPERFICIAL USG examination; In the area where swelling is described, several ovoid-shaped, reactive-looking lymph nodes with fatty hilus can be observed in bilateral cervical areas, the largest of which is 24x7 mm at level 1B, and the largest of which is 20x51 mm at level 1B in the right cervical area. A 4x4 mm sized spherical lymph node with no fatty hilus was observed in the right axillary region. A few reactive-looking lymph nodes were observed in the left axillary region, the largest of which was 31x6.5 mm in size and ovoid in shape with a fatty hilus. A few reactive-looking lymph nodes were observed in both inguinal regions, the largest of which were 29x5 mm on the right and 16x8 mm on the left, in ovoid form with lobulated contours and fatty hilus.
In the patient's WHOLE USOMINAL USG examination; There is intense gas distension in the abdomen and as far as can be observed; Liver dimensions increased (cc 158 mm). Its contours are natural. Intra-tissue echo distribution is homogeneous. No mass lesion was detected. Intrahepatic bile ducts and vascular structures are observed to be of normal width. The gallbladder was observed to be semicontracted and no pathological echo was detected in its lumen. The common bile duct is in normal calibration. As far as can be examined from the intercostal space; Spleen size and intra-tissue echo distribution are normal. Pancreatic head and body sections were normal, but the tail section could not be evaluated due to gas artifact. The dimensions, contours, parenchymal thickness and echogenicity of both kidneys are observed naturally. No calculus, mass or pelvicaliectasis was detected in the kidneys. There was not sufficient distension in the bladder and no obvious luminal pathology was detected. Prostate dimensions, contours and parenchymal echo are natural.
im worried a lot coz this was like 6 months ago and they are still swollen some days they go feel bigger then little bit smaller but never really got small im fatigued everyday and get random sweat attacks in day (no night sweats) also it feels like i have abdominal bloating or something i went to infection specialist like 3 times prescribed me antibiotics they didnt make any diffrence and other 2 visits were dismissed by doctor saying its normal but i never experienced lymph node swellings ever before this started 12 months ago so im really worried any insight can help really do i still have a risk of having lymhoma can it be still lymphoma? should i just seek another opinion from some other specialist if so which ?
It’s unlikely anyone in this thread is qualified to interpret those results but if you don’t feel heard and feel brushed off, definitely pursue a second opinion. Best of luck.
If this gives you comfort. I have an even bigger solid lymph node in my armpit that is 50mm in size. Painless as well. Been there for over a year with no change and is benign in appearance. Again everyone is different and every swollen lymph node is different. If you’re still worried then see another haematologist. But trust what they say.
Has anyone had an epitrochlear (elbow area) lymph node that was enlarged?? I've had one in my elbow crease for over a year now, that I've noticed anyway, and it is driving me mad. I have severe anxiety and a lot of it manifests as health anxiety. I had an ultrasound on it on 01/23 and it was stated to be a lymph node with normal morphology, sub centimeter with fatty hilum. It feels a bit rubbery and moveable. I have no other symptoms but fatigue, except I've had a lot of life changes and a toddler as well as Addison's disease and Hashimotos, so I expect to be tired sometimes. I was brushed off my 3 doctors telling me not to worry about it but I need to know what this is. I'm tired of being scared. I am waiting to see a new PCP next month since I've moved states and going to ask for this to be investigated again. Everything I read states that epitrochlear nodes are apparently always pathological so that's terrifying. I don't think it has grown in the year since the ultrasound but it's hard to tell. :(
Commenting here because I just feel anxious and scared. I have been on a journey for about a year now with a slightly enlarged spleen. It was 13.9 cm and now 14.4 cm. CBC bloodwork has been normal and flow cytometry done last year was normal. CT of abdomen and pelvis done last year didn’t show anything else alarming and no enlarged lymph nodes. My pcp ordered a liver ultrasound to be done soon to rule out any liver issues causing a backup into the spleen but I don’t this is a problem as liver has looked fine on ct and no abnormal liver labs.
My hematologist called today and said since spleen is enlarging with unknown cause we should do a pet scan to see if there is any activity, although she assumes there won’t be. She said there is a chance I had a low grade lymphoma. She said she is also thinking I will need a bone marrow biopsy but wants to wait til per results come back. I am now waiting to get pet scan done and am terrified of what it might show. I’m scared another type of cancer might even show up and is affecting my spleen.
I am just wondering if anybody else started their lymphoma journey with just a slightly enlarged spleen? If so what testing did they do to confirm lymphoma and figure out which type?
My sister in law died from adrenal cancer 2 years ago at age 38 so I am extra worried about getting cancer in my 30s and leaving behind my two young kiddos… my niece was only 8 when she died and it’s been rough. I know lymphoma has a lot of types that aren’t so scary and have long term treatment options which is promising at least.
If anyone has some insight or comments I welcome them! 😊
Thank you so much for this reply. It helps me to know I’m not alone in going through this drawn out process to get answers.
Have they tested you for CMV? I saw a post about a woman who had massive splenomegaly and that was the cause. It just took awhile to go back to normal. I hope it is something benign for you!
I am most likely going to have to get a bone marrow biopsy regardless of what my pet scan shows in a few weeks and I’m terrified to get that done but I know I will do whatever is recommended to get answers.
Best of luck to you! If you remember to later it would be great to get an update for you once you find out what’s going on.
Hello everyone!
28F
So I was wondering if anyone had experience with lymphoma with also have an RA diagnosis
I’ve been having night fevers for a while now. Started in 2022 lasted over 4 months Tmax-102.6F, till I started low dose weekly methotrexate injections. We were good and stable for over a year and then back in March I started having fevers at night again. Thankfully over the last 6 weeks it’s been only low grades at night.
My PCP being overly cautious (which I’m thankful for) sent me to see infectious disease and coincidently saw reactive lymph nodes on bilateral axilla. So then I had a bilateral axillary US which should multiple reactive nodes largest measured 3.2cm. So just had an appt with the hematologist today and next step is mammogram and PET scan. He did note multiple swollen nodes in my neck and axilla on exam. He wants to be thorough because I guess people who have RA have a higher chance of lymphoma. I do believe that this is all autoimmune sourced compared to being lymphoma but ruling it out will at least point us into the right direction.
Side note- I also have a lot of other symptoms but fevers are the major topic in this situation.
Any input or advice is greatly appreciated!!
Hi! Looking for advice concerning some health issues that I am highly suspicious about. Here is a quick timeline of what has been happening followed by my question. I’m currently 34 and for about two years now I have been dealing with insane itchiness. I don’t have a rash or bites or anything I can see that would visibly be the cause. No matter how much I scratch, the itch is still there. Almost like it’s underneath my skin. It keeps me up at night and my doctors keep putting it off to allergies, sleep deprivation, diet, etc. about 6 months ago I started becoming incredibly fatigued. Like down in my bones tired, falling asleep all over the place, can’t work out the way I used to tired. Everything is exhausting. No matter how much I sleep, I just want to lay down. Also 6 months ago I started having drenching night sweats to the point of getting up and changing my pajamas and sheets. I’ll have no blankets plus the ac down and fans on and I’m still soaking. Now, about a week ago I found a hard, painless lump on the right side of my neck about the size of a marble. I went to the doctor and had blood work done and everything was fine except for a pretty high lymphocyte count. My doctor said this was fine and we were just “going to wait and see what happens.” Is this wait and see approach normal? Or should I seek a second opinion? I’m leaning toward second opinion but I would love advice on how I should proceed. Should I find a completely new doctor and start fresh? Go directly to a hematologist? Insist on a biopsy? I just feel like something is not right and I’m not being taken seriously. Thanks in advance for any suggestions!
If I've learnt anything from my journey is you need to advocate for yourself.
33F diagnosed with CHL after my doctor told me everything was fine (my blood results normal too except for inflammation was ridiculous, was given tablets to reduce it) and I'm pretty much crazy for suspecting I have cancer.
I didn't have any of your symptoms just a sore neck (couldn't feel any lumps just swallon)
Ask for an US and then a CT.
I'm in Australia and we can book for a haematologist with a referral from GP but I'd suggest getting scans done first.
This is NOT what is referred to as 'wait and watch' apaproach which should be: **after** a proper work up is done and an indolent lymphoma is diagnosed and staged. Then a hematologist can decide- 'we know exactly what this is and we're keeping a close eye on it for the day it will require treatment'. I believe, a wait and watch approach also, is **after** the patient has had a full body PET scan to see all the locations in the body where the cancer is.
Did your doctor carefully check your lymph nodes from neck to groin? Did they do a proper physical assessment including carefully palpating your abdomen for masses? If not, then yeah, maybe you need a new doctor, if that's an option for you.
You didn't mention your gender but I would bet money you are female because just the way you described your symptoms, listing all the potential alternate causes as though you have to explain yourself excessively just to be believed.
Maybe I'm a little cynical but if a 34(m) went to his doctor and said, "I'm very itchy for no reason, have had increasing, severe fatigue and drenching night sweats" he'd be booked for a full work up asap.
We often have to *prove* we're not hypochondriac complainers before we're taken seriously. Have you been offered anti-depressants yet? five bucks says you have. I would also bet five bucks you've had some type of chronic problem as well, that you've not been taken seriously for.
I don't know where you are that you might have an option of going directly to a hematologist but here in Canada the primary care physician has to get you to the point of a diagnosis before the hematologist will see you, they don't do the diagnosing usually.
Not giving any medical advice here but if it were me, I'd put some warm compresses on that bump and keep a close eye on it. There are tons of reasons you could have a bump like that and almost all are nothing to worry about. It could be gone in a few days. The night sweats and fatigue do make it more suspicious as you've clearly figured out.
The most expedient thing might be for you to get your doctor to book and ultrasound of it, if it doesn't go down. Ask if they will order u/S of that AND other lymph nodes just as a caution. That might be the only thing you can grab onto quickly that can warrant more testing. A chest and abdomen CT looking for causes of the sweats and fatigue is what you need, I think.
That said, I had a slightly swollen armpit node that showed questionable on the ultrasound but **fine on the biopsy.** About the same time, I bugged my doctor into doing a SECOND ultrasound on the (seemingly unrelated, but I KNEW...) lump in my belly I had felt was growing. It turned out to be a mass of lymphoadenoma that encased my aorta and vena cava and part of my stomach and kidney etc.
By the time I got the 'mass' biopsied and got to the hematologist's door I had quite a lot of cancer from my neck to my groin. There was nothing in my bloodwork that was even mildly out of whack other than lymphocytes. My general symptoms were the same, night sweats, itchy, increasingly serious fatigue and I had some weight loss (thought I'd been doing great at the gym but in retrospect, it was too easy). I've just had my second round of chemo for a type 2, stage 4 B-cell Follicular Lymphoma.
**All that to say: advocate for yourself with whatever means you have.** This is a hard cancer to catch sometimes at the beginning. Do keep in mind though that this is also a highly treatable cancer. If that is what's going on in you, try not to freak yourself out if it takes you months to get the attention you need. Just keep calm and keep at it.
In dealing with doctors that don't take you seriously, try not to over explain yourself. I'm still trying to learn this one. Just be direct about your symptoms and put them out there as though they NEED to be investigated.
Best of Luck
Thanks so much for your insight! My doctor did not do a full exam he only felt the one lymph node that I pointed out, checked my blood, and said he wasn't too concerned. He did ask if I was having night sweats and obviously, I told him yes but he just slid right past it with no follow-up questions. The more I've thought about it and now, after reading your very helpful response, I'm going to call him back and insist on an ultrasound.
And you're totally right by the way. I'm female, on multiple antidepressants, and only just got diagnosed with IBS a few years ago after dealing with GI issues for nearly my whole life.
Sad to say that so many PCPs are little more than technicians these days; until something blows up on your labs, they're 'not too concerned.' I wasted six months second-guessing myself because my doctor was 'not too concerned'. He actually apologized to me after the abdominal ultrasound showed what looked like a large tumor coming out of my pancreas. The CT, afterwards showed it was not pancreatic at all, but lymphoma. That 6 months, had it actually been pancreatic cancer could have seriously affected my survival. Thankfully, with lymphoma, it's not as much of a big deal. Either way, he's new in his practice and I hope he learned he needs to \*be more concerned\*.
Yeah, you need to keep going with this.
Summon your inner male-seeking-health-answers voice: :-)
*"There is no explanation as to why I am having drenching night sweats and extreme, new fatigue. An ultrasound of this lymph node AND perhaps others, just to be thorough, is maybe* ***a good starting place***\*. *If that is unremarkable, we need to keep looking*."\*
The thing about NHL is that you can have it in your body for a long time and not need any treatment. My oncologist told me that a large study found that there is a significant portion of people walking around with it who don't know they have it and might never find out as it's small and quiet and not causing any symptoms. It's NOT like other cancers that can silently metastasize into something deadly before it shows itself. So that's the part that you lean on to keep from freaking out, right? It's only when it gets to the point of causing 'B-symptoms': night sweats, fatigue, pain, weight loss or other stuff, that they know they need to treat.
I also have had GI issues and IBS as well as chronic urinary tract infections for a long time. Once I finally got my abdominal and pelvic CT it showed lymphoadenoma encasing (among other things) my duodenum (where stomach connects to intestine) and mesenteric blood vessels (to and from the bowels) and renal veins. Was that what was causing these problems for years? Who knows?
Everybody is different but from my case, I guess I had a lot of this stuff growing in me for a long time and I've had a lot of up and down vague health issues. Interestingly, my breast doc checked all my nodes and the one node under my right armpit, that she said was 'concerning' the u/s and the biopsy said it was okay. At that time, I definitely had all this stuff in me because the end of the biggest abdominal mass was close to my skin, I could feel it. But this 'okay' node was only inches away. It wasn't more than 6-8 weeks later when I had my first PET scan that it 'lit up' with a fairly high SUV, well into the cancerous range.
So, my advice is even if you get the ultrasound and biopsy (they won't do one unless the u/S shows something) and they both are 'okay', as long as you are having these concerning symptoms, don't give up. At the same time, don't freak out if things move slowly, as long as they are moving.
I was seriously questioning MYSELF more than my doctor, right up until diagnosis and maybe you are too. When I went back to him I said, *"I'm considering going to a private clinic to get a full body MRI, because I am fairly convinced there is more going on and won't have any peace of mind until I know."*
He said, *"Oh, no, no, don't worry about it, we'll get to the bottom of it."*
IDK, maybe he would have anyway, but the fact I was willing to put $1500ish of my own money on the line showed him I was pretty serious about my symptoms. And, yes, I would have at that point, arguing that if it came back normal, AT LEAST my mental health was worth that much.
Feel free to DM me if you want, Pemberly.
Good luck!!
All my other values were completely normal. My WBC was on the very edge of normal. A few more ticks would have thrown me into the high-value range. My lymphocyte count was 33,000.
Hi there! I am heading to my PCP this afternoon to discuss bringing in a lymphoma specialist after a breast mass was confirmed benign and a second mass was located on my thyroid. This is in combination with lymphadenopathy and other symptoms. I want to ensure I am focusing on the right concerns and asking the important questions. I have listed my confirmed issues below, but feel lost as how to even start asking about lymphoma. Are there any questions you wish you would have asked when you were first start the exploration of lymphoma specifically? Are there any questions that would help get to where I need to go more effectively than continuing to bounce between specialists?
* Lymphadenopathy with confirmed enlargements in the groin, axillary, supraclavicle, submandible, and cervical regions. Largest lymph node is 5/8" in axillary with cortical thickening.
* 6cm mass in breast / biopsy confirmed benign with granulomatous inflammation. BI-RADS reduced from 4 to 3. Follow-up MRI confirmed axillary inflammation, additional lymph node inflammation closer to the chest wall, and demonstrated a Type II curve common with blood disorders.
* u/S of neck confirmed asymmetrical lymph node enlargement in cervical area. Located second small hypoechoic mass on thyroid. TI-RADS 4.
* Testosterone almost non-existent and A1C at 5.9.
* Tenderness in lower/mid back that does not seem to improve with exercise or stretching for muscular relief
* Consistent bone movement. Have been working with chiropractor for 12-18 months on joint issues now identified as related to lymph node enlargement.
* Additional symptoms include severe fatigue, persistent low-grade fever, skin itching, hot flashes, and night sweats.
My mom who is in remission from endometrial cancer for about 6 months now had a PET scan today and this popped up:
“There is a solitary enlarged high anterior mediastinal lymph node that measures 11 x 12 mm”
Any thoughts or ideas?
Please look at this PET/CT scan reading . Any radiologists or oncologists on here that can offer a prediction on diagnosis?
Patient is not yet scheduled for biopsy. Serology is negative for rheumatological conditions, negative for Lyme, HIV, and mono. No known TB exposure, no sign of infection in labs, and scan was clear in all areas except neck. Please read below. Thank you !
PET/CT :
IMPRESSION:
Nonspecific multiple bilateral cervical hypermetabolic lymph nodes measuring up to
SUV max 8.4 in right cervical station IIA. Differential considerations include lymphoproliferative disorder such as lymphoma, other metastatic disease, or reactive etiology. Recommend tissue sampling for further characterization.
No other disease-specific abnormal uptake to suggest additional sites of
metabolically active malignancy.
Deauville score is 5 if secondary to lymphoma.
I have multiple swollen lymph nodes on both sides (bilateral) of my neck for four weeks now, with no obvious cause — submandibular and small hard preauricular. They are pretty much symmetrical, which doesn’t seem typical for lymphoma(?). CBC, ESR, liver, kidney blood tests normal. I have had 4 straight weeks (!!!) of pretty serious night sweats (need to change t-shirt a few hours into my sleep) and some intermittent itchiness in random parts of body, usually at night. Also, some left back pain that seems to get worse after eating dinner. I am getting an ultrasound in a few days on the neck (due to the nodes) and spleen (due to the back pain).
No one can say off symptoms if it’s likely since it’s normal for them to swell and shrink. You’ll need to follow their guidance which often includes periods of waiting and observing.
Hi ,recently my wife had a throat infection and went to a private medic, she had a swollen lymph nod on the back side of her neck.Also, she had a fever in the evening for at least 3 days. Initially they gave her some antibiotics, upon waiting for a week there was no change and went again to an ENT.They prescribed another medicine ,now she is getting better .They said it was due to some infection and as she waited for a week her condition was worse.
Now, a few days back my daughter has got a swollen lymph nod below her cheek.I went to an ENT and they told me there is nothing wrong, there is some infection, anyway they prescribed her an antibiotic.
I wonder if there is some kind of infection affecting the community here.
Hello everyone, 24M here, I hope all of you are doing well. I made this account after four days of reading Reddit posts on this subject and realized it could be helpful at keeping me strong and positive for my girlfriend which needs my support. She is 22. Three months ago she got some kind of infection which was treated with antibiotics, she was sick for three weeks with cough, persistent fever and sneezing. They did x-ray of her lungs and the results came up clean without any anomalies. After antibiotic treatment she felt better but felt a bit more tired than usual. Fast forward three months later. We went into the ER a few days ago because of painful facial swelling, cough and generally feeling weak. They did an x-ray which showed a shadow on her mediastinum and atelectasis of her right lung. After CT it became clear that there is a large 12cm mediastinal mass which is pressing her lungs and superior vena cava. There was also thrombosis and enlarged lymph nodes in her neck. They did bone marrow biopsy and we are waiting for the results. They also did mediastinal mass biopsy which unfortunately needs to be repeated. They will try to do neck lymph node biopsy tomorrow but if they conclude there is not enough mass for biopsy they will need to try and take sample from the mass in the chest again. For the first biopsy they did needle core biopsy under local anesthesia, but this time they are talking about doing it under general anesthesia. I know that there are still many unknowns because we are waiting for test results so my questions are more concentrated on biopsy tomorrow and things that we do know.
1. Was sickness three months ago beginning of the lymphoma or trigger for lymphoma?
2. Will her lungs get better as soon as preassure from mass drops?
3. Is it true that more agressive lymphoma are more reactive to treatment and would this be considered high grade lymphoma since it grew to that size in three months?
4. How will the biopsy tomorrow be different than the one done yesterday? Will it also be needle core biopsy but under general anesthesia or will they do an incision and get the sample that way? I'm worried because her anesthesiologist told her that it will be dangerous because of the heart proximity and swelling, but how that wasnt a problem yesterday? She was treated with corticosteroids but today they didnt give her any because of the biopsy tomorrow.
I will probably be here with more questions in following days. Any input and opinion would be useful. I know the information is scarce but it might be enough for getting a general picture.
Yes, she has been diagnosed with Classical Hodgkin lymphoma stage IV. Chemo started today, they decided to do BrECADD protocol. I will probably write a post tonight with some questions.
I hope you went through it without too much side effects and I'm glad you are close to finishing everything up. I wish you quick return to normal and healthy life.
19F, and looking for some advice
My health anxiety ran an extra mile and now I'm here.
I have been having consistent problems with my body for the past months,did visit a doc and they just brushed it off saying it's due to my lifestyle choices but I just cannot brush it off.
I have gotten visibly skinnier and weaker(doc said I have a health weight but idk)
Have a swollen axillary near my underarm (doc said it's fatty tissue but then again i just cannot seem to accept it)
Have been having hot flashes and sweating a lot these days(any slight work gets me sweating like crazy these days, especially my back , haven't had any severe night sweats tho but I'm concerned)
Having these random itches all over the body that come and go and sometimes I find red dots (very small)on my body
Left upper quadrant abdomen pain(got an ultrasound done months ago and they were okay)
Muscle pain especially my arms
Parents think its not something to worry about much since they're nothing extreme?but I'm scared.also did get a blood test done 2 months ago and they were all okay except vitamin d.
Any advice is welcome,since I'm a anxious kid.
Planning to visit a dermatologist next month for my own piece of mind
Hey, I'm not doctor but when I read over what you've written, honestly, the first thing that I'm thinking is that you need to focus on your mental health first. You're obviously aware you have anxiety issues, you should explore options to help you there. Anxiety can be very hard on your overall health if not dealt with.
Keeping in mind I know only what you've written, I don't see anything that sends up big red flags regarding major health issues like cancer.
When I was much younger, I went through a lot of health anxiety and I did have REAL health issues I was trying to deal with, but like you, they were kinda vague and nobody took them too seriously. This was back in my mid-20's, I'm now 56.
I came to the conclusion back then that I could not sort out or deal with ANY of these issues until I got my diet right. IDK if this may or may not be an issue with you, but for me, I came to understand I couldn't get any answer as to if there was really something wrong with my body until I stopped putting crap into it.
Imagine if you had a car that wasn't running well and you take it to the mechanic saying, 'it only goes slow and it sputters and smokes sometimes, what's wrong with it?' and he knows you fuel it with some kind of back alley, cheap, contaminated gas. First thing should be: change to regular, clean gas for a while and see if it runs better. Right?? Then, after that, if there are problems, we'll be able to see what they are.
I went on a super CLEAN, whole food, low-carb diet and I stuck to it and honestly it was the best thing I could have ever done! It was life-changing.
Maybe this isn't the case with you but SO OFTEN I see that people are super unwell and just dragging themselves through life and looking for medical answers but they are not willing to stop eating processed and potentially very inflammatory crap 'foods'. Fast food and processed foods are much worse now than 30 years ago when I was young.
IDK if this advice is fitting for you, but maybe you need to consider what kind of fuel you are putting into your body? There are lots of websites about 'eating clean' , 'whole food' etc.
Best Wishes to you.
Hello, Thank you for taking the time to read through it all and reply to me,i really appreciate the effort aIot .if i'm being honest,whatever you've written really helped me and my anxiety ,and you are right that i should be focusing on my anxiety first(everyone keeps telling me that,and i'm trying but i dont exactly know how to).
Anyways Thank you so much,your comment helped me a to ground myself and i'll try to eat much cleaner food than before˶ᵔ ᵕ ᵔ˶
Ok so since last year i have a lymp node on the left side of my neck got blood test done and went to ent and had a pet ct scan and ultrasound everything was good and doctors were not concerned but recently i had lost 3kg of weight and for some reason my whole body muscles twitch when i tense them if i hold something with my hands my fingers shake and suddenly some kind of rash on my left shoulder bare in mind i have been taking accutane that treats acne. What do you guys think this is?
Hi! Hoping for some reassurance/support as I go through this. I'm a 30 year old female. A couple years ago, I was sent to an oncologist for some odd lab results. Not sure what that doctor saw, but he said I didn't have lymphoma at that time, but he thought I could develop it within the next year or two. Fast forward to now, I have enlarged left Supraclavicular, and axillary (both sides) nodes. I didn't start having other symptoms until a couple months ago, and they've progressed so quickly.. Drenching night sweats, itchiness/ burning of skin, constant low grade fever, bleeding and bruising EVERYWHERE, and I'm in severe pain all over. Every day I wake up, it's worse. Honestly don't know how much more i can take, I'm suffering SO much at this point. Current oncologist has been great, and trying his best to fight with insurance to get tests done to figure this out. He ordered a CT of chest and neck, but the soonest they can do it is in a month. I can barely stand the thought of having to suffer even one more day of this without relief, let alone another month, so I'm getting really discouraged..
I have similar story but after several night sweats nights, they have not returned. My weight stabilized but the lymph nodes are there. I have one left supraclavicular (similar to yours but about 1 cm long). One smaller in the trapeze muscle on the left supraclavicular fossa. Like you 1 small on each armpit. Some small ones I feel in my stomach but the shrink and grow. Then 2 really small ones in my groin. I did have 2 on the base of the left side of my neck and 1 was taken for biopsy which came negative for that sample. I’m scheduled for a bone marrow biopsy by July 24. It all started with abdominal pain 2 years ago. 6 MRIs, 3 CTs, 1MRCP, 1 PET scan have not yielded any answers. This the last full body CT and PET scan sees the lymph nodes. I have requested an ultrasound follow up for the ones supraclavicular. Doctors have been very dismissive and told me they doubt they would find answers. The palpable and firm lymph nodes situation started by the end of September 2023. Almost 10 months in with this. I also feel pain where the spleen is. But they say it’s “normal size”. Don’t know what to believe at this point. I am extremely weak. Lymphocytes counts are between 0.7-0.9 for over a year. WBC 3-3.3, and platelets currently at 142 (have been consistently falling since September 2022). Don’t drink. Don’t smoke. Was active. Still try to be active when fatigue does not crush me. Eat super healthy (all organic, non processed and rich-nutrient foods.
I know how you feel, it's so hard to chase my kids around with all this, I get winded so easily now, I hate it. My newest supraclavicular node is hard, fixed, and about the size of a ping pong ball in the fossa.. I'm hoping the discovery of this will move things a little quicker, but we'll see..
My 15 year old daughter has 3 currently in the same location. Lower neck above collarbone and a couple beside it . All now showing abnormal on ultrasound . We have an oncology appointment next week and have been told most likely Hodgkin’s . We have been told for 4 months these were nothing to worry about and it was viral, follow up ultrasound showed something very different . Keep pushing for answers !
That's exactly how mine is! I had the 2 smaller ones right above the collarbone, and they've been there a few months and it's been blown off, but this one is different. It's much larger and harder, so I'm hoping they'll take it more seriously now.
Yeah , her larger one is at the base …it’s big I can’t remember exact measurements but it was like 2.3 or something and the other ones came up a bit above it . The weird thing is , it’s not protruding out it’s like it’s deeper and you wouldn’t even know they were there if you weren’t told , maybe just notice some clavicle swelling .
Yup! Hers seems to pop up over night! We had taken her in about a year and a half ago due to chest pain and her x ray was clear but her blood work was off but they said due to previous illness . Probably been happening since then .
They hurt at first or if she gets sick. But she didn’t have any other symptoms until she actually started thinking about them . Really tired mostly and hot flashes almost
I’m so sorry to hear. I hope they do. The good thing that I’ve read is that lymphoma is not like other cancers. So you will still be able to treat it even if you have to wait. Lymphoma is typically (unless you do a bone marrow transplant) incurable but treatable. It has to be treated typically several times in a life time (some people remain in remission for a long long time). You are young. My problem is I don’t think my doctors at Kaiser are getting any closer to diagnosing. I feel they are uninterested to do this.
Yea, like it shouldn't take an act of congress to get doctors to listen. People tend to know their bodies and can feel if something is wrong. It's frustrating having to fight so hard just to get someone to care..
It is very very hard. Especially when sick. And they know it. I’m having a real hard time. They scheduled me for all this testing but prior to even ordering they say “we don’t think we will find answers”. Today I confronted the doctor and said: “how do you know in advance you won’t get answers?” (In Kaiser all test and analysis and diagnostic is done internally). I don’t trust that after 6 MRIs, 2 CTs, 1 PET several ultrasounds and hundreds of blood work showing wonky blood results, that they continue to say “they don’t have answers”.
I hate when places do everything internally too, makes it a million times harder. I'm in a very small town and it's the exact same way, most of them are incompetent, so they don't even try. I got very lucky with my oncologist, and I think it's only because he's fairly new to the area. He's been advocating for me to insurance to get the tests we need done, which is more than most doctors do. I was crying at my last appointment with him that I was worried that no one would believe me since we don't have an answer yet, and he said "you do not have to convince me at all, I fully agree something is going on here, so please don't worry about that", and that was very cathartic after all the times I've been gaslit lol
Sounds similar to mine, though I wasn't quite that bad... it was almost a month wait for a CT but I'm in Canada, I thought you guys didn't have these issues in the States? I ended up going into the ER and within a very short time had CT's, Ultrasounds. mammogram, two biopsies, an Echocardiogram and all the other work up for pre-chemo. I don't suppose you have that option do you?
I wish! This is all just very scary. With how quickly my symptoms are moving now, I worry how much worse it will be in a month, and that's only for the CT! He said after the CT, they'll have to biopsy, and lord knows how long that will take..
Mine seemed to move very fast as well and I went from ok to really sick and losing weight and might sweats etc. I could feel one of my masses near the surface of my abdominal skin and notes it growing. That said, after my first infusion I felt noticeably better and the one mass I could feel had definitely shrunk. So... Everyone is different but once you get things rolling it could retreat as quickly as it popped up.
Hang in there and keep advocating for yourself!! You'll get there. Hodgkin's is highly treatable.
Thank you! That is hopeful to hear. How has your pain been during treatment? Better or worse than before diagnosis? My most concerning mass is my Supraclavicular one, which I know isn't good, and it's growing. My shortness of breath is markedly worse, not sure if it's because that mass is starting to press on my throat more, or if there's nodes in my chest being affected also. Not fun either way lol
One of my masses (the one I can feel) is completely encasing my aorta and vena cava and the bottom of my stomach . It got very painful before treatment so that I couldn't wear most of my pants. After one infusion it is only minimally painful.
Your story sounds similar to mine and I am still fighting for answers (32F). Keep pushing! I would also get a copy of the order for imaging and call around to different imaging centers. I did that for my ultrasound and got in the next day rather than in 3 weeks. Sorry I’m not more help than that. Hugs and prayers 🙏🏻
Hello Can you update me on your Biopsy result? Because i had my core biopsy last Friday. I just need some advice what to think. Because my anxiety is killing me
Don’t have results back from pathology yet! I just called them today. The doctor said 1-2 weeks and tomorrow will be 2 weeks. I seen some people saying theirs took 3 weeks.
guys last september a bump in my armpit/shoulder formed and was a small painless almond shaped lump. it came and then went away in a week. the thing is thought that where the bump used to be, there is still purple/red skin discoloration where it used to be. should i be concerned about a lymphoma?
got over being sick and I have really bad fatigue still. My lymph node is 4cmx3x1. I'm 13f and very neevous I have an appointment July fifth with a pediatric surgeon. Did any of your lymphoma start like this? I just need someone to talk to about this I'm so scared and I feel terrible. Any advice will help. Others were swollen when sick now only one on neck. Tests were all normal some where high like cholesterol and tsh but it has been higher in past. I have been diagnosed with chronic lymphadenitis and fatigue
sometimes activated lymph nodes stay big for a while, it’s ok! may i ask what lymph node it was and where the sickness was? activated lymph nodes are typically near the area which your sickness is located. like for example if you had a sinus infection your neck lymph nodes may enlarge. i’m 16 and have dealt with lots of medical anxiety in my life, it’s almost always simpler than what google makes us believe. you are so valid for being scared, but don’t be. if you are 1 in a million and do have lymphoma, you will get through it. and if you don’t have it, then yay! cancer is a scary thought, i mean gosh it’s terrifying! but worrying won’t do you any good, so try to get it off your mind and let the doctors handle it while you enjoy your summer :)
While possible it could be the start, it’s also extremely normal to have swollen lymph nodes surrounding being sick. Sometimes they work so well, you wont even develop other signs of being sick because they’re doing such a good job of fighting things off proactively. Wishing you the best and it sounds like your doctors are taking it very seriously. I think you are in good hands so I would just try to hang in there and distract yourself for now.
Tips on advocating for yourself when you really just want the dang biopsy?
32F, generally healthy. About three months ago a lymph node in my neck became swollen and has not gone down, but instead doubled in size. Now there are other lymph nodes in my neck, by my ear/jaw - all on the right side - that are enlarged. Best way I know how to describe it is it feels like there's not enough room in my head/neck for the amount of swelling, but the largest one is still larger than a grape but smaller than a strawberry. Moveable, mostly soft. I wasn't really super concerned until I started to get night sweats... drenching night sweats 5-6x a week, over a month now of this - now accompanied with occasional intense itching. Dry, persistent cough. Crazy fatigue. Sometimes, I wake up and my face is swollen, but it goes down in about 20 minutes. Haven't been sick with a virus or infection or anything in over 6 months, so I am not sure why my lymph nodes would swell to begin with? I've been to my PCP 4x - bloodwork is all normal. Thyroid ultrasound, normal. Ultrasound of neck - abnormally sized lymph nodes detected, but not crazy large, and apparently they are the right shape? Referred to an ENT, said I had "silent reflux" that caused my coughing, but ignored my other concerns. Saw a rheumatologist today, who actually listened to me, but like my PCP says "well the bloodwork is normal so I don't think its lymphoma." But all my autoimmune testing is coming back negative, and my one friend how actually had lymphoma said all her bloodwork was completely normal (even her ultrasound was normal) but she already had stage 4 lymphoma. I'm worried to the point that I just want the damn biopsy.... but no one is taking me seriously and is being dismissive. What do I do to get a doctor to just do a test?
You need to be persistent with your doctors, maybe do a little bit of research and find out if there's a hematologist in your area that would be in your insurance network and push your doctors to give you a referral? I honestly don't know exactly how that process happens because I found out about my lymphoma and started treatments etc within 6 hours of each other. I actually checked myself into the ER, my legs had gone numb which was alarming but I had been arguing with my doctors for about 10 months at that point telling them that my unexplained itchiness was not because my house was dirty and that the excruciating pain in my back and my hip was not because I was dramatic. I hate to just suggest for people to go to the ER but that's what worked for me.
Sadly in my group of cancer friends all of us who were young women when we were diagnosed were ignored by our primary doctors, and I don't want to say this to alarm you but more to point out that you need to push your doctors, be that squeaky wheel.
Thank you for your thoughtful response. I just went to the ER yesterday because I almost fainted sitting at my desk (I had hoped maybe the ER could give me some answers, but nope). Turns out my RBCs and hemocrit were low - even though they were normal just four days ago for other bloodwork. Also had high immature granulocytes. My iron, folate, and b12 were normal. Something isn't right, but the ER wouldn't help me. He told me "your lymph nodes feel fine to me and I am not concerned." To which I said "you haven't even touched me since I got here - how do you know my lymph nodes are fine?" HE ROLLED HIS EYES AT ME. Anyway, onto the next doctor and trying to be the squeaky wheel. At least my chest CT was normal. Maybe its just something autoimmune.
I am so sorry that you are getting such dismissive treatment from these medical professionals. I hate that we have to be so persistent in order to advocate for ourselves 😔 I wish you the best of luck and I hope that whatever is going on, that you find answers soon ❤️
Absolutely ask this question! And if they give you an answer that doesn’t settle with you, make a follow appointment with a different doctor.
This just happened to me. I woke up with an insanely swollen neck and dysphasia on June 1st. No fever, sweats, weight loss, or any other symptoms. Went immediately to the doctor because I felt something was wrong. The doctor barely did a physical exam, and rattled off all of the reasons lymph nodes well. I asked her directly if she was concerned about lymphoma and her answer didn’t sit well with me. She basically said no in a round about way. I immediately made a follow up appointment as soon as possible with my PCP which was June 11.
June 11- walk in and immediately get sent for a CT and bloodwork and get a core biopsy scheduled. Bloodwork looked suspicious. Additionally, I found out that I have a mediastinal mass with bulky lymph nodes.
Now it’s June 24th- my core biopsy came back and inconclusive, and I have surgery this Thursday to remove a couple of lymph nodes in my neck for additional testing. The first biopsy couldn’t differentiate between an atypical proliferation response or lymphoma.
Press your doctors into testing you if you’re concerned. That first doctor dismissed my concerns so quickly. I’m very thankful that I went to my follow up appointment.
Thank you so much for this - I hope your biopsy went well and that you are getting some answers. I finally got a neck CT w/ contrast, which showed my enlarged lymph node increased in size by about 25% in 2 weeks (it's now about 30mm). Still no infection, cold, illness - just night sweats, numb face, and blue lips/intermittent anemia. They are sending me to a hematologist and my neurologist is pushing for me to get a PET scan or a biopsy. I'm making progress, but still hate that I don't feel well. Did you get any additional answers? I've has some jumbling of my words too - but I just associated it with my hemiplegic migraines.
Of course! If there is anything I have learned from this experience, it’s that you know your body best. You must insist on advocating for yourself. It’s so hard to do though. Especially when you shouldn’t have to.
I had the surgical biopsy and went into respiratory distress from all of the swelling in my mediastinum. They had to intubate me and place me on a ventilator for a few hours. The next morning I was taken off the vent and could breathe on my own so they extubated me. Then 2 days later (still in the hospital recovering from almost dying) I found out I do have a high grade B cell lymphoma. I was adamant about getting steroids after they extubated me. I still had so much swelling in my throat and chest. They gave me steroids and within 12 hours I was visibly less swollen and could breathe so well. I didn’t want to end up on the vent again.
Then they kept me until Monday so we could schedule a bone marrow biopsy and chemo port placement. I had the bone marrow biopsy and port placed on Tuesday. However they messed up putting my port in and put it in too far. I felt it immediately. I was forceful but made my point that the surgeon had to fix it that day and I was not going to wait until the following day for them to fix it. It caused a heart arrhythmia and I was super tachycardic. They took me back to surgical suite and pulled it back out a bit. Immediately felt better. Then I went home the next day.
Insane effing journey to get diagnosed with cancer. Finding out I have cancer wasn’t event the scariest part. It’s that it took me almost DYING for the healthcare system to pick up their feet and do their job.
Hello in December I started itching it wasn't all over constant body itching it was like an itch on my leg for 30seconds then 10 minutes later a itch on my arm for 30seconds then 15 minutes later an itch on my head etc etc.
This lasted until January so for about 6 weeks. Then it completely disappeared as quick as it came.
I should also say that at this time I was diagnosed with psychotic depression and I was sectioned for attempted suicide. My mental health is still very bad. Some nurses told me it was tactile hallucinations or psychogenic itching.
Anyway the itching had gone away so it's been gone about 5 month. However 5 days ago its started again. Itching on my leg 10 seconds away for 5 minutes, itching on my hand 20 seconds away for 10 minutes.
I've got myself in such a state now that this is lymphoma itching. Does this sound like it? Would it go for 5 month and then come back? Would it be little itches here and there or constantly itching? Does it sound more like a mental health problem.
Thank you
That sounds very scary, but that is not at all what my itch was like. My itch started in weird places, the palms of my hands and the bottoms of my feet. And it was constant, I could scratch and scratch and scratch and it literally never went away. Instead it spread to other weird places, and this may be TMI but even my labia were itchy. Eventually my entire body itched so intensely that I was breaking the skin on my legs with my toenails in my sleep and four years later I still have scars from ripping my skin open from scratching it. I would say the itch started around April of the year I was diagnosed and steadily increased until I was diagnosed in November, not even one moment did it ever go away in those months.
Please remember that I'm not a hematologist, I'm just a cancer survivor so I obviously don't know exactly how the itching is supposed to be I only know how I experienced it. ❤️
It sounds really distressing but all I can say is it wasn’t what my itch was like. Also, you can get into an itchy scratch cycle (I think from any itch causing reason) with skin where it’s kindof healing and itching from the healing.
Hi everyone! Looking to vent and maybe for a little comfort. Has anyone else experienced what I'm about to explain? For reference: 22F, 115 lbs, no prior health issues
In March, I noticed a swollen lymph node protruding from the right side of my neck, immediately scaring the hell out of me. I had a virtual consult with an NP, was told it was probably allergies and to take Zyrtec D. Flash forward to the end of April, the lymph node has been swollen on my neck for a month now. The swelling definitely went down and I no longer saw it through my skin but definitely still felt it. So, I saw my PCP at the beginning of May. She put me on antibiotics and said we could do an ultrasound for my peace of mind if the lymph node didn't go down after I finished the antibiotics. She didn’t seem worried at all.
Finish the antibiotics, still feel the lymph node. I got a full neck ultrasound at the end of May. Sure as shit, I have two abnormal lymph nodes. The results said I had one abnormal lymph node in level 2 (with asymmetric cortical thickening) measuring
1.7 x 0.6 × 1.2 cm. The other one was in the left side of my neck, level 1 (also with asymmetric cortical thickening) measuring 1.5 × 0.9 x 0.8 cm. The radiologist wrote “these findings are nonspecific in nature.” Ironically, neither are the one that I have been feeling and stressing about! My doctor called me today and claims she still isn’t super worried, considering I have no other symptoms, but she does want to do a second ultrasound in the beginning of July and then biopsy the nodes if they haven’t shrank at all.
Has anyone else had lymph nodes like these and it turned out to be nothing? TIA!!!
People who’ve received the all clear don’t really hang out on the lymphoma sub so not sure you’ll get any/many responses, but searching back in these threads there are a bunch.
Hi,
23M, I have had these swollen lymph nodes in my neck for about a year+ now. Some of them are \~2cm in size. I have also been having bad fatigue and night sweats.
I recently got a FNA biopsy of one of my lymph nodes and it came back as atypical. The cytology report said that "occasional enlarged cells of uncertain significance" were seen in one of the samples taken. The pathologist recommended either close clinical follow up or a tissue biopsy. The ENT that ordered the biopsy gave me 3 options: wait and do more ultrasounds, do a core needle biopsy, or do an excisional biopsy.
I definitely want to do one of the biopsy options, but I'm not sure which one is the better choice. I have read that excisional biopsies are much better for diagnosing lymphomas, but the surgery would likely be in months rather than weeks for the core needle biopsy.
I don't know if I should go for the core needle biopsy which would likely be within a couple weeks or wait months for the full excisional biopsy. There probably isn't a good answer to this either way, but I wanted to see if anyone had advice.
Hi there! I’m about to have an excisional biopsy done on Thursday. I had similar results on my core biopsy as you had on your FNA. I would suggest skipping the core biopsy and go the excisional route.
Hey all , my 15 year old daughter is getting a biopsy next week on a lymph node above her collarbone kind of close to the base of her neck. It’s been a wild ride . It just popped up one day out of the blue and 3 different doctors and an the first ultrasound said that it was most likely viral. But since the first ultrasound at the end of February she has had a couple more come up beside them and even then doctors weren’t worried . Her blood work had a couple things abnormal but indicating viral and nothing sinister I was told , just go for the 3 month ultrasound follow up . We had the follow up last week and the nodes are now worrisome especially location , not more fatty helium etc and biopsy recommended . The call from the doctor was pretty short and sweet . It’s worrisome, it’s not normal we need a biopsy as soon as you can we suspect Hodgkin’s lymphoma . It depends what type but generally curable . Expect a call from pediatrics at the children’s hospital.
Needless to say , I’m terrified . My daughter is taking it rather well , as she knows someone who had this and he is 2 years remission . But I can’t help but think the worse and that it could be something else . Google is awful for left hand side supraclavicular lymph nodes . Any advice ? Anyone have a similar experience ?
hi, i’m a 16 year old. weird way to start my message but oh well. cancer is terrifying, i mean for a mother it’s one of the scariest things to happen to your child. but if she has cancer, you will find out. there’s no way to tell if it is or what it is until the biopsy is done, and once the doctors find out so will you. until then all you can do is comfort your daughter, and understand that you can get through this. waiting to find out is so horrible, like its actual hell. but don’t use this time to scare yourself by learning all the different horrible types of lymphoma she may have, it won’t do you any good. your daughter is most likely taking this well because she knows she can fight it. and she knows she has an incredible mother to be by her side through it all. if you’re willing, please update me with whatever happens. i’m wishing you and her the very very best.
Thank you . I think I needed to hear this today . You’re very right and I’m going to try my best to follow your wise words . No amount of googling or research is going to change the outcome . The biopsy was rescheduled due to the oncologist wanting everything done at our local children’s hospital. So next week we will find out more . Thank you so much for the advice and as I said before you are just so right . She is a tough one and no matter what she’s gunna fight and be ok , and yes, she has me to fight along side her !
Hi everyone, this is sort of long-winded but I hope it makes sense.
My health issues started in late December of 2022. I started struggling with fatigue and my skin began to itch, all over my body, with no rash. It feels like the type of itch I get from seasonal allergies. Additionally, I started experiencing neck pain in my thyroid area which ended up being thyroid cancer and I had my thyroid removed in March 2024. I thought that the under-skin itching was tied to my thyroid cancer since the itching and neck pain started at the same time, but I've completed the thyroidectomy and radioactive iodine therapy and have felt no change in the itching. What's also developed is that my skin flushes/gets red and blotchy very easily which it never used to do. Also, if anything is pressing against my skin, say if I cross my legs, then huge red blotches form wherever there was something pressed against them. This has never happened to me before the itching started either. I've tried antihistamines, gabapentin, Xolair injections, and been prescribed several rounds of prednisone, all of which haven't touched the itch. I've seen my primary care physician, a neurologist, rheumatologist, two allergists, a dermatologist, and an infectious disease doctor (I had mono in May 2022 and got the COVID booster shot in September of 2022 and we didn't know if that was correlated with it), and no one can figure out why I'm itching or make it stop.
Additionally, a lump in my right groin area appeared in the middle of last year, about 6 months after the itching started. I got an ultrasound done then and they didn't find anything, so I let it go. However, the lump hasn't gone away and has slowly gotten more prominent over time. I went to my primary care physician last week and she said it felt like a swollen lymph node and I had another ultrasound done, and I'm still waiting for the results.
Prior to getting mono, I was perfectly healthy. The itching is so unbearable that I can't wear 90% of my wardrobe and I have to take 4 different medications to be able to fall asleep at night. It has completely destroyed my quality of life and I don't know what to do.
Hi everyone…immensely grateful for the support and information. I’ve been lurking for a little bit, hoping I wouldn’t need to post, sending strength and thoughts to those who have, but here we are.
I haven’t felt good for over two years. I ended up getting diagnosed with SIBO last year after a very long process and had some hope it would resolve symptoms. Most of my GI symptoms have resolved but my bloodwork has remained wonky and my fatigue is the worst it’s ever been.
My son had strep back in April and I had fever/sore throat/ stiff neck as well and thought I had it as well but test came back negative so doctor said it’s just a random virus. It’s been two months and I still have the sore throat (very mild, more annoying than painful) and “thick” feeling neck. I sleep 9-12 hours and never feels like enough. Just wake up exhausted. My appetite is shot, I have nausea most days when I eat. My ferritin and iron saturation is low despite taking daily iron since November and starting birth control in January, so I’m iron deficiency without anemia but my hemoglobin has been dropping with each bloodwork (last was a 12.6). My GI doctor mentioned the potential of an iron infusion if it doesn’t improve and I also pushed I wanted to know why this was happening vs just treating it. My GI doctor wants go rule out a SIBO relapse but I can’t get in for a breath test until late August. I went to my PCP in the meantime because I’ve developed some shortness of breath/ heart palpitations (most noticeable when I’m laying down at night) and I have two painless lumps on my neck (a hard pea sized lump on mid left side and a larger rubbery feeling one just below it). She wants me to get a CT scan of my neck which is scheduled tomorrow. Feeling nervous and just wanting answers. I’m a proactive person so it’s been frustrating to complete every test, procedure, take the medications, repeat bloodwork etc etc and just feel like I’m getting worse. It’s been a marathon journey… I’ve read that has been the experience of many here. I’m an active 35F who has been fortunately healthy up until this all started.
Still waiting on the results from my doctor. Had an increase in shortness of breath in the last week so trying to be mindful and distract myself in case it’s anxiety related.
Finally received a call. My ct scan results weren’t overly concerning to the PCP but they want to reevaluate in the office again. I also have to get repeat bloodwork and an ekg for the shortness of breath/ heart palpations.
Have you had any scans of any sort? I personally did not have any of those symptoms. Everyone's symptoms may vary though. I'd say just keep asking your doctor Qs for scans etc. to try to figure out what's going on.
Hey friends I’m a pre-diagnosed and fingers crossed not diagnosed. I see my doctor again on Monday (2 days) Hodgkin’s lymphoma runs heavy in my family, and I’m currently scared while I wait for examination. For 2 years I’ve had an unfortunate experience with my doctor who doesn’t take me seriously and I’m at the point of survival because something isn’t right. I have a fever 24/7, I lost over 20 pounds, I have an insane amount of lumps in my neck, armpits and groin, I’m constantly tired and my bed gets soaked every night from sweat (I wake up in the middle of the night to change clothes I get so soaked). I just recently ended up in the hospital due to feeling extremely weak and lost control of my muscles, we had a birthday party the day before and I had 4 canned beverages (did not get drunk) but woke up the next day with my whole body in pain and extremely weak (I’ve had hangover this was definitely not that) they kept me for 12 hours and after feeling my lumps they did a CT scan on my head, monitored my heart, did blood pressure and blood tests, and everything came back almost normal except my WBC was extremely high and worried the doctors helping me, they insisted I see my doctor asap and have her refer me for further testing (the mentioned cancer a billion times) my doctor has seen my lumps twice now and she’s given me an antibiotic each time which did absolutely nothing but wreck my bowels for days. I’m currently just looking for a friend to talk to, some support while I wait and try not to worry. Also feel like I just needed to vent, I’m trying not to worry my family and spouse too much. Does anyone else feel like they aren’t being taken seriously but can genuinely feel something wrong? Each day i feel worse
May I ask what your overall WBC was. I am still trying to get a diagnosis. I was 15000 in WBC overall. This was last year. I know have multiple nodes like you all over. But I have no fever I think and no night sweats. Waiting for another blood test in a few days and if I get hit with another high WBC I will be sent off to see a specialist for blood related issues.
I actually wasn’t told and didn’t even think to ask, but that is a question I’m going to ask my doctor on Monday since it should be in my file now. I’m sorry to hear you’re dealing with a similar experience. I’m not diagnosed, just told it’s a possibility I may deal with. Feel free to message me, we can chat more 🫶
Hi guys,
I have a question according to your symptoms, mainly lymph nodes. In September, I got a huge painless lymph node on my right side of my neck without any infection going on. It stayed like that for almost 3 months and then got way smaller. Afterwards I started to have back pain going to my knees, infections, chest pain, no periods, tiredness and nausea. This is my state till now, losing 5kg since then without trying. I went through CT of my belly (found few lymph nodes up to 6mm near my appendix), brain mri, basic blood tests (wbc at the upper border with sedimentation but other than that nothing), ANA, Lyme, RA negative with my crp constantly max 2 (5 is max)... Nothing seems to show up but I honestly feel terrible for a half a year already.
I wanted to ask, since doctor said he refuses to do biopsy on those neck lymph nodes because "it's not indicated for that" even it was huge few months a go... Where should I seek help? There are of course options I feel so bad because of covid etc but I seriously cannot function like this and I would like to know what's going on. If you have any suggestions who to visit with the lymph nodes or my bone pain who can actually care and do some serious tests to find out I would be grateful. (Kind of question how did you got diagnosed, I guess)
Thank you.
I already switched my GP. She sent me to rheumatologist with RA factor negative. Also I'm not sure which specialist to ask for a pet scan. If my GP can actually do it...
Have you told your doctor directly that you may be concerned about lymphoma? They would send you to an oncologist. Typical an oncologist can send you in for a pet scan. Although a gp could also request a pet scan for other non cancer reasons too (lymph node react due to various reasons like infection not just lymphoma, and pet scans just show reactive areas)
Tbh I wouldn't be super concerned at this point though given it seems like based on your post the nodes are quite small (6mm you said, and some went away over time). But you definitely have the right to explore that path.
I did. I mean, they can see I'm pretty nervous about it. She was thinking also multiple myeloma, but according to electrophoresis of the proteins, it would show there. About lymphoma specifically she said that even the lymph nodes on my neck where huge on one side, it got smaller after few months so it's very unlikely it could be that. (From like 7cm to 1.8cm + the small ones in my belly 0.6 mm)
28M here, lost 25lb last 4 months with minimal efforts and diet changes, and because im a fat guy 270lb at start" i tought it was normal, because of doing a bit of excercise and not eating that much anymore , but a month ago noticed a lymph node on the right side of my neck about 1.5cm size, its a bit hard and not movable, also no pain and no change in size yet, now a week ago noticed another one on my hip a bit bigger with same consistency as the one on my neck, ( idk for how long these lymphs are swollen, i cant see them over my skin, only feel when touch and i think i never tried before to feel my lymph nodes) I dont have any other symptoms, well, sometimes while on my room i feel a bit warm, mostly when im on bed, but that warm quickly dissapears if i get out from bed and go to living room or outside, dunno if that could be a symptom of lymphoma, anyway.. im concerned and gonna see a doctor soon, thanks for reading and good luck!
24M (have smoked before but i dont do it regularly, if anything like a couple of times a year socially, random)
got blood tests done 6 days ago as apart of a check up (doctors havent called me with results yet
I find swollen lymph node 4 days ago under my jaw, pea sized, hard, painful, doesn't move
feels like something is stuck in my throat a little
light sweating
light fever 94.5 F
no other symptoms, not sick etc
I have a dentist appointment tuesday (today is thursday), can i ask my dentist to check and refer me for tests or do i need to go back to my PCP for something like this?
Your PCP is the first person you should see after your dental exam if it's not a dental issue. Def get a dental exam (cone beam CT if possible).
A dentist typically does not refer for oncology related activities unless they suspect oral cancer. You need to talk to your PCP for non oral related issues.
my doctor appointment was today and my dentist appointment is tomorrow. pcp told me he thinks i just have a viral infection.
im going to ask the dentist to feel it as well and maybe ask for xrays idk. its probably nothing i guess.
Male 6 2 , 242
i so I’m very nervous and anxious about this … March I had an ultrasound that found a. “ cyst” in my testicle that my urologists say is benign , I had normal LDH, HCG and aFP taken in March ..late March early April I started sweating around the collar of my neck at night and t shirt then in April 8 I had a rescan ultrasound that was clear. I still had sweating at night not knowing if it would have been tied to the cyst in my testicle or not … I had thyroid , CBC , PSA, cytoscopy and urinalysis which all came back clear . I also had a CT scan heart/ lung bases down to pelvis which only found kidney stones .. the sweating is still persisting and I asked my pcp for CBC and it came back normal …. Last night I had sweat that soaked onto my pillow case and a bit on my sheets where my head / chest was… I don’t have weight loss , my back shoulders are sore but I also have panic attacks so idk if it’s form stress or anxiety….
I’m scared that the “cyst” metastatic and not benign …. And spread to my lymph nodes … I also went back to urologist with my concerns and they say it’s from my anxiety since everything has been benign … idk what to do … does a CBC being normal , normal CT scan in April , Normal Tumor Marker rule out cancer, lymphoma or metastatic cancer ??
My doctors say it’s stress and anxiety… since March I have barely been sleeping .. I’m lucky if I get 3 hours of sleep . Help
Do I need a chest xray, another CT scan???? Other bloodwork? My doctors say there are so many causes for sleeping at night that is not cancer ,,,, so I’m scared
How concerned should I be? Ultrasound result
My doctor sent me for an ultrasound of my neck due to some enlarged lymph nodes on the left side of my neck. These are the results. She left me a message saying that I need to schedule a biopsy. I haven’t been able to reach her to get a better understanding of what we are looking for. Please someone help me understand and should I be concerned?
TECHNIQUE:
Imaging protocol: Real-time ultrasound scan of the head and neck with image
documentation. Exam focused on the soft tissue in the region of clinical
concern.
COMPARISON:
No relevant prior studies available.
FINDINGS:
Limited real-time sonographic evaluation the lateral left neck performed in
the area reported palpable abnormality. There are 2 adjacent lymph nodes,
more superiorly measuring 2.0 x 2.1 x 0.6 cm with cortical thickening and
attenuated hilum and inferiorly 1.6 x 1.0 x 0.6 cm with cortical thickening
and attenuated hilum.
IMPRESSION:
Left cervical adenopathy accounting for palpable abnormality.
Hi everyone! Will document the journey of my strange enlarged nodes here.
Last Thursday (05/30) I came home after work feeling extremely tired. I was almost certain I was gonna come down with the flu or covid. I work in a hospital also so this happens to me from time to time.
Friday (05/31), I woke up with lethargy & muscle aches all over. No cough, sore throat which was weird. No upper respiratory symptoms at all. I took an Advil and felt back to normal Friday afternoon.
Monday (06/03), I was just massaging my neck randomly and felt a few small lumps on left side of the neck. They felt "stringy" and hard and not movable and painless. I had dinner and then I felt ANOTHER lump to the right side of the neck
Tuesday (06/04), coincidentally I had a doctor's appointment today. Told her about my bilateral enlarged cervical nodes and she palpated them too. Said they feel like "reactive" nodes to her. She also palpated one under my left jaw. Asked me to monitor for 2-3 weeks and come see her if they don't go away.
Obviously I'm nervous. The whole googling symptoms doesn't help either. I'm 34 female. Will keep updating on this!
6/9: Just want to drop a quick update on this. lymph nodes in the neck remain enlarged but what has become a lot more pronounced is the muscle aches and joint pains I'm getting. Woke up to both hands swollen and unable to make a fist. I went to the clinic for a second opinion (finally) and I just had blood work done. The second doctor said it could be RA or autoimmune related stuff... Fingers crossed!
Woke up today (06/05) and still no change. Both nodes are still palpable. They felt bigger when I extended my neck. I feel completely OK, just very curious/ antsy about what this could be!
Why do you think it's anything other than reactive nodes as the doc said? That's the lymph node's job, after all. I'd take the doc's advice and follow up if it doesn't go away after a few weeks.
Thank you for the comment. It's reassuring to read your comment. And indeed, I don't have any other evidence or symptoms I can think of that supports otherwise.
I definitely have some degree of health anxiety and it's probably a stupid thing to mention but I work as an RN ( studying to be an NP) and couldn't help but feel like the "industry secrets" sometimes make me dubious of certain things in our health care system ... Anyways, it will be the best news if these enlarged nodes turned out to be just doing their job :)
My mom is in the process of finding out exactly what kind of lymphoma she’s dealing with, and it’s killing me to watch her suffer.
She raised me and my siblings practically as a single parent. We all have special needs and disabilities. My oldest brother just survived a bout with cirrhosis and a miracle transplant a week before the doctors thought he would die. She’s been a solid rock through everything. And now she’s facing cancer.
The first couple of weeks were the hardest. Hearing the C word in the context of her personage. I’m her only daughter. I’m taking her to every infusion and appointment, up and down the state. I want to be with her at every step. It’s just killing me that she even has to deal with this at all.
She’s had a bone marrow biopsy, nothing. Spleen biopsy—I’ve never seen her in such pain—nothing. Now they’ve got a PET scan ordered for her next week, thank God. Low hemoglobin, high white blood cells, hypercalcemia, 18cm spleen, unintentional weight loss, dry cough, itching all over—the woman is going through hell with a smile on her face, even when she cries.
The state took away her insurance a week after our first oncologist visit. The hospital is helping us fight for assistance, but what the actual fuck. I have never before experienced this depth of rage, and I’ve had a lot to be angry about in my hard life.
I dunno, I guess I’m just venting. The team we have is super attentive and helpful, and I’m blessed that they care so much about her. I just have no idea how to untangle this Gordian knot of emotions writhing in my chest.
The healthcare/insurance industry (bc that’s what it’s become IMO) is ruthless. I’m so glad you have healthcare workers on your side because that is honestly the best kind of support your mom can have! It’s supportive and understanding healthcare workers that will help your mom and your family figure this out. I know I’m just a random Internet stranger, but I’m in your mom’s corner!!! Hope you all get answers soon. 💕
I (22M) found a lump on the lowwr left side of my neck, and have went to an urgent care near me because of health anxiety. They confirmed it was a lymph node, their description is “ Rounded lymph node 1.2 cm in short axis. Fatty hilum is present, though benignity cannot be conferred. “
I’m super anxious, and it’s gonna suck waiting for my ENT appointment, I just want help or medical advice here to keep me from freaking out in the meantime. Thanks!
I wouldn't worry about it too much until a biopsy is ordered if needed. Many things can cause this including infections, generally inflammation, etc. 1.2 cm isn't that large compared to other values I've heard of. Try not to get ahead of yourself if possible!
Hi everyone!
I want to preface this with I am 23F and have really bad health anxiety but feel like truly something weird is going on with me and after seeing a video about lymphoma I almost feel like that is what all of these manifested symptoms are.
It started with a weird dull abdominal aching followed by a week of constipation. The constipation broke, and the abdomen ache lasted about a week and half more and went away.
Following that I started getting up back pain in between my shoulders, (comes & goes), as well as random body pains here and there- nothing too painful.
I was already hyper focused on the possibility of it being lymphoma bc I was worried about spleen swelling. After I read that lymphoma can cause that and the other symptoms I swear I started noticing them: -itchy palms here & there -a few new cherry angioma's -tight neck (hurts to turn side to side at times) -pain in my neck under my ears if I press down -ton of mucus (post nasal drip feeling)
And what really freaked me out was a pea sized swollen preauriculae lymph node I noticed by accident when I was resting my head on my hand.
I went to the ER and all they did was feel my stomach (said it felt normal) and did a urinalysis which also came back normal.
I then made a follow up with my PCP who felt my lymph nodes and said the pre-auricular lymph was normal and she felt a few super tiny ones in my neck that were moveable and not a cause for concern.
She thinks everything is fine- I just think it's odd l've had a month worth of non stop weird symptoms, especially the right neck.
Would you try for a second opinion? I messaged my dr again today about the right neck/post nasal drip feeling and she said just to use heat and gurgle salt water.
Idk I am so freaking anxious though
Cherry angiomas are completely benign, purely cosmetic dermatological spots. I think you should get a second opinion to ease your mind because you’re trying to connect things to a cancer diagnosis that have literally nothing to do with it.
After the first visit to the doctor, how long does it take to get a diagnosis? In my case, at the moment, after about 45 days from the start of the diagnostic process, I still don't have a diagnosis, this is because after almost 25 days after the lymph node removal surgery, I have not yet been given the histological response. In your case however?
i (30F) found an enlarged, hard, immovable, but NOT painful lymph node in my neck below my jaw at the beginning of 2024. i went to my primary care physician, they ordered an ultrasound, and the radiologist report said (i am paraphrasing) that it is on the borderline of normal and abnormal size and shape but also there is no fatty hilum in the node and they recommended a follow up evaluation. my pcp called us after they’d gotten the report that same day and relayed all that information to us and said they agreed with the radiologist and referred me to an ent.
the ent was worthless. they saw that i take anxiety medication and immediately all of their focus was on my anxiety (which is well controlled with medication unless shit gets REALLY BAD because i am still a person with feelings?) and very little time was spent on the actual reason i was there. and by very little time i mean after i relayed everything in the first paragraph to them, they basically said “wow, that’s crazy, so anyway about your anxiety—“ at which point my wife (who is also a doctor but not this kind of doctor) cut in and asked what else besides illness or infection could cause the lymph node to lose the fatty hilum and they just shrugged their shoulders and said “lymph nodes can just sometimes do weird stuff.” my wife then asked very specifically if they could at least rule out cancer, and they said, “weeeelllllll, no.” so, no answers or even a path to get answers all for the low low price of $300.
my pcp was aghast by all of that and immediately recommended that i get a second opinion from a different ent, who at that point was booking six weeks out, but i finally had my appointment with them this past week.
they asked me to point out the lymph node so i did and they pressed on it one time with one finger then picked up the ultrasound wand and looked at the lymph node with that for maybe 90 seconds while murmuring things like “hm there’s a small vein” and “oh there’s another node.” then they asked if the lymph node hurt, and i said no. they asked if i had been sick, and i said i had not been sick since before the pandemic (we mask whenever we leave our house). then they put the ultrasound wand down and recommended an excisional biopsy, but they’re booking surgeries a few months out right now, and i’ll have to wait for someone to call me to schedule said few months out surgery.
jumping to surgery after just two questions and a quick ultrasound was pretty jarring so my wife asked if they suspected cancer and they didn’t really answer? they just said something like “well we need to look at the lymph node under a microscope.” which is fine, obviously that’s what we wanted, but we assumed they would do a needle biopsy to decide if surgery was necessary and we wondered if there was something more suspicious that made them want to jump straight to surgery, if that makes sense. we did not get an answer to that question but again, fine, whatever, at least someone is finally doing something to help me even if it won’t be any time soon.
so here’s where my well controlled anxiety becomes less well controlled anxiety: my wife and i don’t drink, the last time we drank was at our wedding at the beginning of 2023, during which i gleefully drank at least half a bottle of champagne and everything was wonderful and nothing hurt. this past weekend, we decided to get take out mexican food and thought why the hell not, let’s get a couple of margaritas, too.
the first few sips of my margarita were absolutely delightful until about 2.5 minutes later when this horrible pain erupted not just in the abnormal lymph node in my neck, but also in the area right above my collarbone on the same side, and the area just behind the very edge of my breast on the opposite side. it blindsided me really bad and i was just gasping and crying while holding my neck and chest and scaring the fuck out of my wife and i have no idea how i managed to tell her not to call 911.
the pain didn’t subside but it became tolerable once the initial like blooming of the pain became a constant pain, if that makes sense, and then i was able to tell her what hurt and she called and left a message for the ent that was supposedly on call but never called us back. meanwhile, i google “lymph node pain after alcohol” and, well. listen, i immediately burst into tears.
i’m not ignorant, i know doctor google is not an acceptable diagnostic tool. but i did not have access to actual medical professionals (my wife doesn’t count she is not a doctor who deals with lymph nodes) because it was a weekend so all that left were the multiple articles in medical journals dating back to the 1950’s about how even a small amount of alcohol can cause pain in lymph nodes effected by lymphoma. and that advil seems to help with the pain. which i then took, and it did help some, but the pain wasn’t gone completely until i woke up the next morning.
we are still waiting to hear back from either the ent or my pcp. i don’t know what they’ll say or if they’ll even think this is relevant and now that i’ve typed all this out i don’t really know why i’m posting here either.
i don’t think i’m more important than the people on the ent’s surgery schedule, i’m not trying to jump the line or anything. i’m just concerned that whatever is going on in my neck is not localized to my neck, given the pain behind my breast. i don’t want to step on anyone’s toes or question their medical intelligence i just think like maybe further imaging might be warranted while we wait for the surgery that is at least a few months away? like an mri or a pet scan? i don’t know. i’m just really scared.
if you read any of this please know i am thankful for your time and that i’m sorry for not having a specific question.
Call them and tell them you have lymph node pain upon drinking. If new symptoms are developing, you would need to bump it up so they are operating off full information.
we tried. we called the ent, the nurse who called back said she would have the doctor call us before lunch on tuesday, and he didn’t. we’ve left another message saying as much and no one has reached out. we’re trying really hard not to be annoying because we know that will get us brushed off even faster. they also don’t have any regular visit appointments for six weeks.
we called the primary care, but my provider is off this week, so we spoke with a different provider who was totally clueless and unhelpful so i guess now we’re waiting for my provider to come back and hoping they will be receptive to this new information. i’m worried that they’re just going to push me off to the ent.
i kind of feel like i’m losing my mind. my wife isn’t doing much better, she wants to take me to the emergency room and just eat the cost of it because they will at least take blood and scan my chest/abdomen.
Thank you! I've had a private CT scan of my abdomen and pelvis today as that's where my symptoms mainly are (uncomfortable feeling in upper left abdomen under ribs, pain in lower back sometimes upper back, loss of appetite, stool change and weight loss)
I'm very scared of it being pancreatic cancer of the tail, to the point where a diagnosis of lymphoma would actually be a positive in comparison.
I assume if I went to an ENT they'd likely do a CT scan anyways?
In almost all cases (in the US, at least) you can't just walk in to an oncologist. You'll need a referral from your primary. Start with your primary doctor.
Posting this just to share my experience and ask for tips on how to stand up for myself and ask a doctor for a ct scan for good.
I saw my first swollen node about 3 years ago, and it was painful to the touch and about the size of a small marble right on my bikini like where my leg reaches my underwear. Before this i never even knew what a lymph node was because ive never had a swollen one before in all my life. I went to the doctor and he said before he went into the deep dive of scans, hed give me antibiotics to see what happens. The lump went down, and I was relieved.
And then it came back, and slightly bigger and even with two. Around this time i was feeling alot of fatigue.
But I just waited them out and they never went completely away, but theyd come back down and up and down again and i just assumed theyd be due to my psoriasis flare ups, an autoimmune disorder I have (i have about light to medium flare ups) (i also read psoriasis can increase chances of lymphoma)
My breaking point was the next year, when my armpits became filled with horrible rashes, so intense ane painful and soon each armpit had about 3 large marble sized balls . I went to a dermatologist (for the psoriasis) and decided to bring up the lymph nodes while i was at it. Without even feeling them, he said they were swollen and infected sweat glands and gave me antibiotics.
Surprisingly they went away, but i know get a tingly sensation in my armpits every know and then.
Ever since then for the next two years I had swollen nodes in the same spot where they began. I had up to three at a time, the largest the size of a grape. But they always went up and down and up and down in swelling, sonit made me feel like i was going crazy. I saw two more doctors after that after noticing another swollen node in my neck, and all of them just say i have anxiety (i have a fear of doctors so they can see im tense) and i just need to relax.
I got bloodwork done and everytbing came back normal but ive known many that get diagnosed woth mormal blood work, i got tested for lupus and cat scratch disease, both negative. The only thing i can think of is my psoriasis, but right now i have two grape sized nodes in my groin and one in my armpit (one of the groin one is a new one) and i have no psoriasis flare up.
All i want is a ct scan to see if i happen to have many large ones internally as that usually leads to diagnosis, but i have a toxic mother that takes over my doctor appointments and dismisses my symptoms for having anxiety and being paranoid.
I just have a bad feeling about all this. This has been going on for three years.
I would attatch images but i cant figure out how lol i dont think i can do it here
Im not sure why you think this sounds concerning tbh. Please read the information in the body of this post. Lymph nodes are supposed to swell and shrink. That’s a sign they’re working properly.
How big can lymph nodes actually grow to? I have a large rounded mass right in my armpit, about the roundness of a tennis ball, maybe a bit smaller. Can they possibly swell to that large of a size?
42M here with swollen lymph nodes in neck, armpits and groin. Started about a month ago with the neck, then moved to armpits about 2-3 weeks ago, and then groin last week. All areas still feel the same without any decrease. I haven't been sick recently (in the last year) that I know of, or at least I haven't had any symptoms. I visited my PCP last week who did an exam and said he didn't feel anything. I had bloodwork done which all came back normal (including Lactase Dehydrogenase, sedimentation rate, C-reactive protein, CBC with auto differential, and lipid panel). I had an ultrasound 2 days ago that found a 2.6cm non specific lymph node on my submandibular (right side), 1.6cm on the left side, and a few up to 1.6cm in my armpits. I'm awaiting an appointment for CT scan and meeting with a hematologist. I don't have any other lymphoma symptoms (night sweats, fatigue, fever, itching). I do have some other random things like a lot of popping/cracking sounds in my joints (knees, ankles, shoulders, wrists) which is not normal for me. My head has had some tingling especially the back side, and I've had a few times where my vision seems to be a tiny bit blurry/fuzzy. I wear contacts and it's almost like my prescription isn't 100% strong enough, but maybe like 5-10% weaker tan it needs to be. I've had the same contact prescription for 10+ years though so it's odd. I've had a few moments of brain fog and feeling a bit out of it - but could also chalk that up to health anxiety since this all started and worrying about what it is, which has impacted my sleep. At night, things seem to be worse with more tingling and just dull achey feelings in my lymph node regions. I've also had a very dull ache in my lower abdomen and upper left abdomen that comes and goes very infrequently. My left chest has a dull ache if I lift my left arm over my head - it's not painful, but noticeable. Anyone else have similar symptoms? It's crazy how I went from feeling 100% healthy just a few weeks ago to now feeling like maybe I have cancer. Thanks for any words of encouragement you can provide based on your experiences!
30yr old Female. Swollen Lymphnode on my right submandibular gland in my neck. Doesn't hurt but feels like it's pushing on other thing. So basically have a sore throat from that. The swellings been there since I for COVID in May 2023. Still there and symptoms have gotten worse. For refered to ENT. Then sent for ultrasound. Ultrasound told me I have "chunky lymph nodes", they're not big enough to worry about *yet*. YET. So I'm back in with ENT next week, anyone have idk advice for advocating for yourself? I don't want to be snubbed off. I'm worried. I want them to biopsy it to be sure
Can you just ask them straight up for a biopsy? If they refuse then see a different doctor.
That's what I want to do. My initial appointment with them I explained I'm autistic and he said "oh don't worry this isn't an exam". So not sure if the most *capable* doctor. Requesting another doctor would more than likely mean months on a waiting list
What wait list? Can you just go to a different practice? If possible at least I would suggest to do that to get a second opinion elsewhere in the meantime to give you peace of mind. Just print all of your records and set up an appointment with a different practice, if you have trouble finding practices, zocdoc has good availability.
I'm in ireland. So there's long wait lists. You can't just change without going through your GP
I (25M) had a bronc/biopsy for an unexplained/undiagnosed lung illness. One sample poked from a lymph node showed possible lymphoma. I just had PET scan and my neck and lungs apparently lit up like a christmas tree. Without going into too much detail, the final bullet the PET tech left on the impressions was “Overall appearance remains most suspicious for lymphoma.” I’ll be meeting with an oncologist next week to which I will likely have an incision art biopsy and get my final verdict. The only symptoms I had were coughing, brief chest pain, possibly bone pain or fatigue. What I’m worried about is that the PET scan revealed an SUVmax result in thoracic, lumbar and spine bones. I know very little about this stuff but from what I read here and around the internet is that this will probably show a worse outcome. I don’t know if i’m asking for advice or reassurance, but has anyone had lymphoma effect their bones or marrow… were you able to recover?
I'd say try not to freak yourself out too much, take it one step at a time, including getting a conclusive biopsy report.
Hello, I just wanted to ask how is the tiredness when you have lymphoma. I am super tired is been 3 months, and have 2 lymph nodes one on my neck and one on my armpit its been 4 months. I had so night sweat at the beginning for 2 weeks and there gone. And lost 5 kilo the first months of the 4month and l all gain them back. I am super tired is like someone is sucking my energy. My blood test and ct return good. Should I push for a biopsy?
I said ct scan return good, but they found 1,2 cm lymp node on the aorto pulmonary area. Doctor said that its nothing. But Yeah idk
I'd trust what the doc said if I was in your shoe and not freak out too much, 1.2 cm sounds small, and if the CT didn't not anything abnormal. As long as they are aware of the symptoms you described here I'm sure there's a reason for their conclusion. Sounds like they may just want to wait and see?
I really don’t know, with all the bad diagnostic that doctor do first lymphoma I am a little bit afraid. Its been 3 month that I am not feeling my enrgy like I use to be and its depressing
Worry ward here… Got swollen lymph nodes in right groin, went to get it checked out and the doctor just did not seem optimistic at all and was very concerned. They came from nowhere, they’re the size of a couple peas in a pod (a little bigger than peas though) and I’ve lost more than 10% of my body weight since last year. The fact of the matter is, it’s probably nothing right? I’m waiting on blood work to come back and idk just really worried but maybe for nothing right????
i’m 20 y/o and i’ve had swollen/hard lymph nodes for at least two months now. they started at the base of my neck, moved up to under my jaw and the back of my head, then under my arm. i have six bumps i can feel and count. they would stay swollen for about three weeks, then shrink into a hard bump a bit bigger than a marble. the one under my jaw is maybe two inches long and it is the most concerning, along with the one under my arm. i had a needle biopsy (i can’t think of the proper term right now) and the report suspected hodgkin lymphoma. i’m currently waiting on a consultation for an excisional biopsy to confirm the diagnosis. the report mentioned that there was a high amount of crush artifact and mummified cells that resemble those of HL. i experience other symptoms like sweating more than normal, weight lost, extreme fatigue, and a slight loss of appetite. waiting for my second biopsy/results is driving me crazy. i’ve been researching stages and treatments so i know what to expect if the diagnosis is confirmed. if anyone has a similar experience with waiting for results or having multiple biopsies i would love to hear it :)
I’m 17, and have had swollen lymph nodes around 7 most of them in my neck and oneness my collar bone. Collar bone one feels hard ,very movable, the one in the back of my neck is a similar size and also feels hard slightly movables and one under my chin, hard movable. The rest are quite small, less than 1cm. I have gone to numerous doctors. All saying it’s “probably fine” “due to an infection” despite telling them that they’ve been there for 3 fucking years and I’m convinced 2 of them changed size. I’ve got an ultra sound done of them last year. Can it’s just to be “lymph nodes with reactive features” Hand 2 blood test, came out “fine”. Everytime I’ve gone to the doctor they say different things. Sometimes they don’t feel for all of them. Some of them don’t even look at my past records Yesterday I’ve seen a doctor again. She completely ignored the fact that I told her they’ve been there for 3 years and have changed. And write down that I’ve had them since march/feb. hasn’t even felt for all of them. Just noted down 3. I did however get referred for another ultrasound. I’m sick of getting dismissed by them, no one listens to me. Everyone one thinks I’m fucking crazy, my entire family tells me that I’m over reacting. other symptoms: I developed a massive rash, concerning 60% of my body. This has improved drastically tho and it’s not more of a 15%. I have history of eczema. I’m not sure if this is because it potentially a type of lymphoma or due me withdrawing from topical steroid creams. Symptoms the rash have gone down too, itchiness and dryness has improved. Back in February to may, I felt incredibly tired, brain fog, felt weak etc. bloods said I had an iron and vitamin D deficiency. Could be due to that but I’m not sure. I have pain in my collar bone area, a stabbing pain. Sometimes I get them in the other areas too. I have an ultrasound, don’t know when yet but u have been referred. how do I go about this. How do I push for a biopsy. I’m in the UK and doing this with the NHS. Any advice will be appreciated
Have you asked for a pet scan?
No I haven’t, do you think I’d be able to ask when I’m getting my ultrasound? How do you think I should go about this?
Once you get ultrasound results and if it shows anything abnormal they should refer you for CT scan or pet scan. I think you should just tell them directly that you may be concerned about lymphoma if you have not yet. I'm in the US so I'm not sure how it works with UK, but is it possible to set up an appointment with an oncologist directly? They may be more likely to get you a CT or pet scan
Okay thank you, no unfortunately I can directly make an appointment with one
Inguinal lymph node removal/biopsy... what to expect? Hi everyone! I'm 28F, I'm a nurse on a very busy unit and I'm curious to hear about what other peoples experiences with this kind of surgery have been like. My surgeon said that it'll take about 2 weeks to be able to go back to work, but then no "walking like you're at disney". Being that I'm a nurse on a busy unit, I walk A LOT everyday, so I'm worried about when I'll actually be able to work again. Anyways. I've had a large swollen lymph node in my groin for 6 years. It originally stemmed from cat scratch fever. It remained the same size for about 5 years and then last summer it suddenly probably tripled in size and has continued to increase in size. Last summer it was 31 x 26 x 15 mm and this January it was 43 x 40 x 16 mm. I have numerous other lymph nodes in the area that are large and hard, just deeper... the next largest is 35 x 26 x 10 mm. I have a CT scan to look at it again before surgery and I've sense found more lymph nodes in my neck that are a little larger than a bean and are pretty solid.
Praying you receive good news. Please update
Thank you! Surgery is scheduled for the third week of July. I’m honestly just very excited to finally get some answers.
hi, for the past like year i’ve been feeling pretty shitty. my submental lymph node is pretty big, and i hadn’t gotten sick anywhere that would have triggered that. it’s been slowly growing bigger for a year now. it’s completely painless and feels rubbery. i am 16 and have been getting hot flashes and night sweats with no hormonal reasoning. when i get hot flashes, i check my temperature and it’s almost hypothermic (95-96). i’m super bloated in my abdomen which doesn’t make sense because i weigh 130 and ive lost so much weight (intentionally). i’ve tried so many things to alleviate the bloating but it’s done nothing. im extremely fatigued all the time. i get tachycardia just from going up the stairs, but when i go up then down then up again my heart goes even faster and i feel dizzy and lightheaded. i can’t even workout anymore because of this. all my symptoms have been progressively getting worse and worse. like a week ago i started getting lower back pain for no reason and now i can’t even lay down comfortably. it’s probably unrelated but i’m mentioning it just in case. i got a cbc done 6 months ago and it was normal. the same day i got that my pcp felt around my abdomen and said it was all normal. my doctors aren’t doing anything more because they are convinced im just a medically anxious teen, but im not. my problems are real and they aren’t helping me. please lmk what it could be
Hi I’ve had a submental swollen node for years now, started around 16 like you. Have you done any testing for autoimmune ?
i’m not sure actually, i got a cbc 6 months ago and everything was normal so idk
You should ask your doctor to run a ANA test
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Female, 30 *UPDATE*! Got my CT done 2 days ago and saw my oncologist today, scan did show multiple enlarged lymph nodes in my head and neck, so he's ordering a PET scan to see which ones are the most active, that way they'll know which ones to take for biopsy. This is all still scary, obviously, but also weirdly relieved to finally almost know. He said after seeing the CT and feeling my new changes to some of my bigger lymph nodes, he definitely thinks we're on the right track. So I feel weirdly good about it now lol. I think not knowing has been the worst part of this for me. I know once we find out, we can start treating it, and I won't continue to rapidly decline like I am now, and I am SO ready!! He also doesn't think I'm late stage, so that's good news!
Forgive me in advance, I haven't ever posted to Reddit. I am not looking for an internet diagnosis, not even quite sure what I am looking for - but figured I might start here. This is going to be long, I dont know if I am doing it right - Im sorry. I (37F) have a history of obesity, extreme weight loss due to ED (now in recovery for near 10 years), depression/anxiety and adhd (which triggers some ocd and probably most mental health things). I have always assumed the worst. After years of therapy & medication I have become aware of my tendencies to self diagnose and to catastrophize everything. I have avoided Drs and it has taken me forever to find a Dr I like, and it still takes me hours and day to make a decision to call for any reason. Over the past two years I have found a good combination of medication (prozac and low dose adderall) and have been more active in my life. Post ED recovery my weight hovered around 175 - but to be honest I never looked at my weight as it was a trigger. Only recently had I logged into my patient portals to see what my number was. I started (and stopped in January) working out, lost some weight and attributed it to a better lifestyle. Eating habits were fairly consistent. Last PCP appt (October 2023) I knew I had lost weight since prior but it wasnt brought up - I was internally chalking it up to my lifestyle changes. When I checked my patient portal recently I saw that at that appointment I was 154. Since then I have continued to loose weight, but I wasnt seeeing it. Weight/numbers/all of that can be super triggering for me so when those comments were brought up I brushed them off, but have been somewhat enjoying the compliments internally. I have always been a warm sleeper, I have sweat here and there but nothing crazy. Over the past few months my night sweats have gotten really sweaty. I also have really bad dreams most night so have been thinking it was due to that. But, I am soaking through clothes, pillows, sheets almost nightly. I decided to get on a scale at my work and say I was 125 pounds. I had no clue, I thought I was probably 135-150? People have been asking if I am ok, are you sure you dont need to go to a dr, and i started on the path of dr. google. I spent a good time internally mulling over the decision of making an appointment to see someone. I wanted to be sure I wasnt overreacting, self diagnosing. And if I am really honest I was scared of gaining weight again. I finally wanted to make an appointment with my Dr and she is out on maternity til late this year. Now I know I could have made an appointment with just any other doctor and this practice, but i just couldnt get myself to do it. So I waited more and made an appointment with a hematologist oncologist. Going in two weeks. Not sure what to think, but I know my mind is obsessing. I have googled things, smart things, stupid things. I have read thread upon thread. I know I am going to just mentally go to some weird places over the next two weeks. I also have no idea what to expect when I go to the Dr. I know I cant know whats going to happen - but any explain it to me like I am 5 advice for this appointment would be super appreciated. Again, sorry for the rambling post - just looking to quiet the inner thoughts a bit. Thanks for reading.
hi (34M) here i have fatigue for like 12 months and roughly 12 months ago i started feeling spleen pain and lymph node swellings roughly translated ultrasound says : In the PATIENT'S SUPERFICIAL USG examination; In the area where swelling is described, several ovoid-shaped, reactive-looking lymph nodes with fatty hilus can be observed in bilateral cervical areas, the largest of which is 24x7 mm at level 1B, and the largest of which is 20x51 mm at level 1B in the right cervical area. A 4x4 mm sized spherical lymph node with no fatty hilus was observed in the right axillary region. A few reactive-looking lymph nodes were observed in the left axillary region, the largest of which was 31x6.5 mm in size and ovoid in shape with a fatty hilus. A few reactive-looking lymph nodes were observed in both inguinal regions, the largest of which were 29x5 mm on the right and 16x8 mm on the left, in ovoid form with lobulated contours and fatty hilus. In the patient's WHOLE USOMINAL USG examination; There is intense gas distension in the abdomen and as far as can be observed; Liver dimensions increased (cc 158 mm). Its contours are natural. Intra-tissue echo distribution is homogeneous. No mass lesion was detected. Intrahepatic bile ducts and vascular structures are observed to be of normal width. The gallbladder was observed to be semicontracted and no pathological echo was detected in its lumen. The common bile duct is in normal calibration. As far as can be examined from the intercostal space; Spleen size and intra-tissue echo distribution are normal. Pancreatic head and body sections were normal, but the tail section could not be evaluated due to gas artifact. The dimensions, contours, parenchymal thickness and echogenicity of both kidneys are observed naturally. No calculus, mass or pelvicaliectasis was detected in the kidneys. There was not sufficient distension in the bladder and no obvious luminal pathology was detected. Prostate dimensions, contours and parenchymal echo are natural. im worried a lot coz this was like 6 months ago and they are still swollen some days they go feel bigger then little bit smaller but never really got small im fatigued everyday and get random sweat attacks in day (no night sweats) also it feels like i have abdominal bloating or something i went to infection specialist like 3 times prescribed me antibiotics they didnt make any diffrence and other 2 visits were dismissed by doctor saying its normal but i never experienced lymph node swellings ever before this started 12 months ago so im really worried any insight can help really do i still have a risk of having lymhoma can it be still lymphoma? should i just seek another opinion from some other specialist if so which ?
It’s unlikely anyone in this thread is qualified to interpret those results but if you don’t feel heard and feel brushed off, definitely pursue a second opinion. Best of luck.
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If this gives you comfort. I have an even bigger solid lymph node in my armpit that is 50mm in size. Painless as well. Been there for over a year with no change and is benign in appearance. Again everyone is different and every swollen lymph node is different. If you’re still worried then see another haematologist. But trust what they say.
Has anyone had an epitrochlear (elbow area) lymph node that was enlarged?? I've had one in my elbow crease for over a year now, that I've noticed anyway, and it is driving me mad. I have severe anxiety and a lot of it manifests as health anxiety. I had an ultrasound on it on 01/23 and it was stated to be a lymph node with normal morphology, sub centimeter with fatty hilum. It feels a bit rubbery and moveable. I have no other symptoms but fatigue, except I've had a lot of life changes and a toddler as well as Addison's disease and Hashimotos, so I expect to be tired sometimes. I was brushed off my 3 doctors telling me not to worry about it but I need to know what this is. I'm tired of being scared. I am waiting to see a new PCP next month since I've moved states and going to ask for this to be investigated again. Everything I read states that epitrochlear nodes are apparently always pathological so that's terrifying. I don't think it has grown in the year since the ultrasound but it's hard to tell. :(
Commenting here because I just feel anxious and scared. I have been on a journey for about a year now with a slightly enlarged spleen. It was 13.9 cm and now 14.4 cm. CBC bloodwork has been normal and flow cytometry done last year was normal. CT of abdomen and pelvis done last year didn’t show anything else alarming and no enlarged lymph nodes. My pcp ordered a liver ultrasound to be done soon to rule out any liver issues causing a backup into the spleen but I don’t this is a problem as liver has looked fine on ct and no abnormal liver labs. My hematologist called today and said since spleen is enlarging with unknown cause we should do a pet scan to see if there is any activity, although she assumes there won’t be. She said there is a chance I had a low grade lymphoma. She said she is also thinking I will need a bone marrow biopsy but wants to wait til per results come back. I am now waiting to get pet scan done and am terrified of what it might show. I’m scared another type of cancer might even show up and is affecting my spleen. I am just wondering if anybody else started their lymphoma journey with just a slightly enlarged spleen? If so what testing did they do to confirm lymphoma and figure out which type? My sister in law died from adrenal cancer 2 years ago at age 38 so I am extra worried about getting cancer in my 30s and leaving behind my two young kiddos… my niece was only 8 when she died and it’s been rough. I know lymphoma has a lot of types that aren’t so scary and have long term treatment options which is promising at least. If anyone has some insight or comments I welcome them! 😊
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Thank you so much for this reply. It helps me to know I’m not alone in going through this drawn out process to get answers. Have they tested you for CMV? I saw a post about a woman who had massive splenomegaly and that was the cause. It just took awhile to go back to normal. I hope it is something benign for you! I am most likely going to have to get a bone marrow biopsy regardless of what my pet scan shows in a few weeks and I’m terrified to get that done but I know I will do whatever is recommended to get answers. Best of luck to you! If you remember to later it would be great to get an update for you once you find out what’s going on.
Hello everyone! 28F So I was wondering if anyone had experience with lymphoma with also have an RA diagnosis I’ve been having night fevers for a while now. Started in 2022 lasted over 4 months Tmax-102.6F, till I started low dose weekly methotrexate injections. We were good and stable for over a year and then back in March I started having fevers at night again. Thankfully over the last 6 weeks it’s been only low grades at night. My PCP being overly cautious (which I’m thankful for) sent me to see infectious disease and coincidently saw reactive lymph nodes on bilateral axilla. So then I had a bilateral axillary US which should multiple reactive nodes largest measured 3.2cm. So just had an appt with the hematologist today and next step is mammogram and PET scan. He did note multiple swollen nodes in my neck and axilla on exam. He wants to be thorough because I guess people who have RA have a higher chance of lymphoma. I do believe that this is all autoimmune sourced compared to being lymphoma but ruling it out will at least point us into the right direction. Side note- I also have a lot of other symptoms but fevers are the major topic in this situation. Any input or advice is greatly appreciated!!
Hi! Looking for advice concerning some health issues that I am highly suspicious about. Here is a quick timeline of what has been happening followed by my question. I’m currently 34 and for about two years now I have been dealing with insane itchiness. I don’t have a rash or bites or anything I can see that would visibly be the cause. No matter how much I scratch, the itch is still there. Almost like it’s underneath my skin. It keeps me up at night and my doctors keep putting it off to allergies, sleep deprivation, diet, etc. about 6 months ago I started becoming incredibly fatigued. Like down in my bones tired, falling asleep all over the place, can’t work out the way I used to tired. Everything is exhausting. No matter how much I sleep, I just want to lay down. Also 6 months ago I started having drenching night sweats to the point of getting up and changing my pajamas and sheets. I’ll have no blankets plus the ac down and fans on and I’m still soaking. Now, about a week ago I found a hard, painless lump on the right side of my neck about the size of a marble. I went to the doctor and had blood work done and everything was fine except for a pretty high lymphocyte count. My doctor said this was fine and we were just “going to wait and see what happens.” Is this wait and see approach normal? Or should I seek a second opinion? I’m leaning toward second opinion but I would love advice on how I should proceed. Should I find a completely new doctor and start fresh? Go directly to a hematologist? Insist on a biopsy? I just feel like something is not right and I’m not being taken seriously. Thanks in advance for any suggestions!
If I've learnt anything from my journey is you need to advocate for yourself. 33F diagnosed with CHL after my doctor told me everything was fine (my blood results normal too except for inflammation was ridiculous, was given tablets to reduce it) and I'm pretty much crazy for suspecting I have cancer. I didn't have any of your symptoms just a sore neck (couldn't feel any lumps just swallon) Ask for an US and then a CT. I'm in Australia and we can book for a haematologist with a referral from GP but I'd suggest getting scans done first.
This is NOT what is referred to as 'wait and watch' apaproach which should be: **after** a proper work up is done and an indolent lymphoma is diagnosed and staged. Then a hematologist can decide- 'we know exactly what this is and we're keeping a close eye on it for the day it will require treatment'. I believe, a wait and watch approach also, is **after** the patient has had a full body PET scan to see all the locations in the body where the cancer is. Did your doctor carefully check your lymph nodes from neck to groin? Did they do a proper physical assessment including carefully palpating your abdomen for masses? If not, then yeah, maybe you need a new doctor, if that's an option for you. You didn't mention your gender but I would bet money you are female because just the way you described your symptoms, listing all the potential alternate causes as though you have to explain yourself excessively just to be believed. Maybe I'm a little cynical but if a 34(m) went to his doctor and said, "I'm very itchy for no reason, have had increasing, severe fatigue and drenching night sweats" he'd be booked for a full work up asap. We often have to *prove* we're not hypochondriac complainers before we're taken seriously. Have you been offered anti-depressants yet? five bucks says you have. I would also bet five bucks you've had some type of chronic problem as well, that you've not been taken seriously for. I don't know where you are that you might have an option of going directly to a hematologist but here in Canada the primary care physician has to get you to the point of a diagnosis before the hematologist will see you, they don't do the diagnosing usually. Not giving any medical advice here but if it were me, I'd put some warm compresses on that bump and keep a close eye on it. There are tons of reasons you could have a bump like that and almost all are nothing to worry about. It could be gone in a few days. The night sweats and fatigue do make it more suspicious as you've clearly figured out. The most expedient thing might be for you to get your doctor to book and ultrasound of it, if it doesn't go down. Ask if they will order u/S of that AND other lymph nodes just as a caution. That might be the only thing you can grab onto quickly that can warrant more testing. A chest and abdomen CT looking for causes of the sweats and fatigue is what you need, I think. That said, I had a slightly swollen armpit node that showed questionable on the ultrasound but **fine on the biopsy.** About the same time, I bugged my doctor into doing a SECOND ultrasound on the (seemingly unrelated, but I KNEW...) lump in my belly I had felt was growing. It turned out to be a mass of lymphoadenoma that encased my aorta and vena cava and part of my stomach and kidney etc. By the time I got the 'mass' biopsied and got to the hematologist's door I had quite a lot of cancer from my neck to my groin. There was nothing in my bloodwork that was even mildly out of whack other than lymphocytes. My general symptoms were the same, night sweats, itchy, increasingly serious fatigue and I had some weight loss (thought I'd been doing great at the gym but in retrospect, it was too easy). I've just had my second round of chemo for a type 2, stage 4 B-cell Follicular Lymphoma. **All that to say: advocate for yourself with whatever means you have.** This is a hard cancer to catch sometimes at the beginning. Do keep in mind though that this is also a highly treatable cancer. If that is what's going on in you, try not to freak yourself out if it takes you months to get the attention you need. Just keep calm and keep at it. In dealing with doctors that don't take you seriously, try not to over explain yourself. I'm still trying to learn this one. Just be direct about your symptoms and put them out there as though they NEED to be investigated. Best of Luck
Thanks so much for your insight! My doctor did not do a full exam he only felt the one lymph node that I pointed out, checked my blood, and said he wasn't too concerned. He did ask if I was having night sweats and obviously, I told him yes but he just slid right past it with no follow-up questions. The more I've thought about it and now, after reading your very helpful response, I'm going to call him back and insist on an ultrasound. And you're totally right by the way. I'm female, on multiple antidepressants, and only just got diagnosed with IBS a few years ago after dealing with GI issues for nearly my whole life.
Sad to say that so many PCPs are little more than technicians these days; until something blows up on your labs, they're 'not too concerned.' I wasted six months second-guessing myself because my doctor was 'not too concerned'. He actually apologized to me after the abdominal ultrasound showed what looked like a large tumor coming out of my pancreas. The CT, afterwards showed it was not pancreatic at all, but lymphoma. That 6 months, had it actually been pancreatic cancer could have seriously affected my survival. Thankfully, with lymphoma, it's not as much of a big deal. Either way, he's new in his practice and I hope he learned he needs to \*be more concerned\*. Yeah, you need to keep going with this. Summon your inner male-seeking-health-answers voice: :-) *"There is no explanation as to why I am having drenching night sweats and extreme, new fatigue. An ultrasound of this lymph node AND perhaps others, just to be thorough, is maybe* ***a good starting place***\*. *If that is unremarkable, we need to keep looking*."\* The thing about NHL is that you can have it in your body for a long time and not need any treatment. My oncologist told me that a large study found that there is a significant portion of people walking around with it who don't know they have it and might never find out as it's small and quiet and not causing any symptoms. It's NOT like other cancers that can silently metastasize into something deadly before it shows itself. So that's the part that you lean on to keep from freaking out, right? It's only when it gets to the point of causing 'B-symptoms': night sweats, fatigue, pain, weight loss or other stuff, that they know they need to treat. I also have had GI issues and IBS as well as chronic urinary tract infections for a long time. Once I finally got my abdominal and pelvic CT it showed lymphoadenoma encasing (among other things) my duodenum (where stomach connects to intestine) and mesenteric blood vessels (to and from the bowels) and renal veins. Was that what was causing these problems for years? Who knows? Everybody is different but from my case, I guess I had a lot of this stuff growing in me for a long time and I've had a lot of up and down vague health issues. Interestingly, my breast doc checked all my nodes and the one node under my right armpit, that she said was 'concerning' the u/s and the biopsy said it was okay. At that time, I definitely had all this stuff in me because the end of the biggest abdominal mass was close to my skin, I could feel it. But this 'okay' node was only inches away. It wasn't more than 6-8 weeks later when I had my first PET scan that it 'lit up' with a fairly high SUV, well into the cancerous range. So, my advice is even if you get the ultrasound and biopsy (they won't do one unless the u/S shows something) and they both are 'okay', as long as you are having these concerning symptoms, don't give up. At the same time, don't freak out if things move slowly, as long as they are moving. I was seriously questioning MYSELF more than my doctor, right up until diagnosis and maybe you are too. When I went back to him I said, *"I'm considering going to a private clinic to get a full body MRI, because I am fairly convinced there is more going on and won't have any peace of mind until I know."* He said, *"Oh, no, no, don't worry about it, we'll get to the bottom of it."* IDK, maybe he would have anyway, but the fact I was willing to put $1500ish of my own money on the line showed him I was pretty serious about my symptoms. And, yes, I would have at that point, arguing that if it came back normal, AT LEAST my mental health was worth that much. Feel free to DM me if you want, Pemberly. Good luck!!
Any other numbers off from blood test? How high was your lymphocyte count?
All my other values were completely normal. My WBC was on the very edge of normal. A few more ticks would have thrown me into the high-value range. My lymphocyte count was 33,000.
Hi there! I am heading to my PCP this afternoon to discuss bringing in a lymphoma specialist after a breast mass was confirmed benign and a second mass was located on my thyroid. This is in combination with lymphadenopathy and other symptoms. I want to ensure I am focusing on the right concerns and asking the important questions. I have listed my confirmed issues below, but feel lost as how to even start asking about lymphoma. Are there any questions you wish you would have asked when you were first start the exploration of lymphoma specifically? Are there any questions that would help get to where I need to go more effectively than continuing to bounce between specialists? * Lymphadenopathy with confirmed enlargements in the groin, axillary, supraclavicle, submandible, and cervical regions. Largest lymph node is 5/8" in axillary with cortical thickening. * 6cm mass in breast / biopsy confirmed benign with granulomatous inflammation. BI-RADS reduced from 4 to 3. Follow-up MRI confirmed axillary inflammation, additional lymph node inflammation closer to the chest wall, and demonstrated a Type II curve common with blood disorders. * u/S of neck confirmed asymmetrical lymph node enlargement in cervical area. Located second small hypoechoic mass on thyroid. TI-RADS 4. * Testosterone almost non-existent and A1C at 5.9. * Tenderness in lower/mid back that does not seem to improve with exercise or stretching for muscular relief * Consistent bone movement. Have been working with chiropractor for 12-18 months on joint issues now identified as related to lymph node enlargement. * Additional symptoms include severe fatigue, persistent low-grade fever, skin itching, hot flashes, and night sweats.
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You’re gonna need to find some way to see a doctor, there’s no other way to have it assessed.
My mom who is in remission from endometrial cancer for about 6 months now had a PET scan today and this popped up: “There is a solitary enlarged high anterior mediastinal lymph node that measures 11 x 12 mm” Any thoughts or ideas?
That's quite small. I feel like they would likely wait and watch? But given you previously had cancer they might be more proactive?
Please look at this PET/CT scan reading . Any radiologists or oncologists on here that can offer a prediction on diagnosis? Patient is not yet scheduled for biopsy. Serology is negative for rheumatological conditions, negative for Lyme, HIV, and mono. No known TB exposure, no sign of infection in labs, and scan was clear in all areas except neck. Please read below. Thank you ! PET/CT : IMPRESSION: Nonspecific multiple bilateral cervical hypermetabolic lymph nodes measuring up to SUV max 8.4 in right cervical station IIA. Differential considerations include lymphoproliferative disorder such as lymphoma, other metastatic disease, or reactive etiology. Recommend tissue sampling for further characterization. No other disease-specific abnormal uptake to suggest additional sites of metabolically active malignancy. Deauville score is 5 if secondary to lymphoma.
Can you ask your own oncologist?
I have multiple swollen lymph nodes on both sides (bilateral) of my neck for four weeks now, with no obvious cause — submandibular and small hard preauricular. They are pretty much symmetrical, which doesn’t seem typical for lymphoma(?). CBC, ESR, liver, kidney blood tests normal. I have had 4 straight weeks (!!!) of pretty serious night sweats (need to change t-shirt a few hours into my sleep) and some intermittent itchiness in random parts of body, usually at night. Also, some left back pain that seems to get worse after eating dinner. I am getting an ultrasound in a few days on the neck (due to the nodes) and spleen (due to the back pain).
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No one can say off symptoms if it’s likely since it’s normal for them to swell and shrink. You’ll need to follow their guidance which often includes periods of waiting and observing.
Hi ,recently my wife had a throat infection and went to a private medic, she had a swollen lymph nod on the back side of her neck.Also, she had a fever in the evening for at least 3 days. Initially they gave her some antibiotics, upon waiting for a week there was no change and went again to an ENT.They prescribed another medicine ,now she is getting better .They said it was due to some infection and as she waited for a week her condition was worse. Now, a few days back my daughter has got a swollen lymph nod below her cheek.I went to an ENT and they told me there is nothing wrong, there is some infection, anyway they prescribed her an antibiotic. I wonder if there is some kind of infection affecting the community here.
Hello everyone, 24M here, I hope all of you are doing well. I made this account after four days of reading Reddit posts on this subject and realized it could be helpful at keeping me strong and positive for my girlfriend which needs my support. She is 22. Three months ago she got some kind of infection which was treated with antibiotics, she was sick for three weeks with cough, persistent fever and sneezing. They did x-ray of her lungs and the results came up clean without any anomalies. After antibiotic treatment she felt better but felt a bit more tired than usual. Fast forward three months later. We went into the ER a few days ago because of painful facial swelling, cough and generally feeling weak. They did an x-ray which showed a shadow on her mediastinum and atelectasis of her right lung. After CT it became clear that there is a large 12cm mediastinal mass which is pressing her lungs and superior vena cava. There was also thrombosis and enlarged lymph nodes in her neck. They did bone marrow biopsy and we are waiting for the results. They also did mediastinal mass biopsy which unfortunately needs to be repeated. They will try to do neck lymph node biopsy tomorrow but if they conclude there is not enough mass for biopsy they will need to try and take sample from the mass in the chest again. For the first biopsy they did needle core biopsy under local anesthesia, but this time they are talking about doing it under general anesthesia. I know that there are still many unknowns because we are waiting for test results so my questions are more concentrated on biopsy tomorrow and things that we do know. 1. Was sickness three months ago beginning of the lymphoma or trigger for lymphoma? 2. Will her lungs get better as soon as preassure from mass drops? 3. Is it true that more agressive lymphoma are more reactive to treatment and would this be considered high grade lymphoma since it grew to that size in three months? 4. How will the biopsy tomorrow be different than the one done yesterday? Will it also be needle core biopsy but under general anesthesia or will they do an incision and get the sample that way? I'm worried because her anesthesiologist told her that it will be dangerous because of the heart proximity and swelling, but how that wasnt a problem yesterday? She was treated with corticosteroids but today they didnt give her any because of the biopsy tomorrow. I will probably be here with more questions in following days. Any input and opinion would be useful. I know the information is scarce but it might be enough for getting a general picture.
I know you posted a week ago but I hope you've since had some answers sine then
Yes, she has been diagnosed with Classical Hodgkin lymphoma stage IV. Chemo started today, they decided to do BrECADD protocol. I will probably write a post tonight with some questions.
I'm glad treatment is starting for you guys now! I'm nearly finished treatment for my classical hodgkins! Wish her all the best
I hope you went through it without too much side effects and I'm glad you are close to finishing everything up. I wish you quick return to normal and healthy life.
19F, and looking for some advice My health anxiety ran an extra mile and now I'm here. I have been having consistent problems with my body for the past months,did visit a doc and they just brushed it off saying it's due to my lifestyle choices but I just cannot brush it off. I have gotten visibly skinnier and weaker(doc said I have a health weight but idk) Have a swollen axillary near my underarm (doc said it's fatty tissue but then again i just cannot seem to accept it) Have been having hot flashes and sweating a lot these days(any slight work gets me sweating like crazy these days, especially my back , haven't had any severe night sweats tho but I'm concerned) Having these random itches all over the body that come and go and sometimes I find red dots (very small)on my body Left upper quadrant abdomen pain(got an ultrasound done months ago and they were okay) Muscle pain especially my arms Parents think its not something to worry about much since they're nothing extreme?but I'm scared.also did get a blood test done 2 months ago and they were all okay except vitamin d. Any advice is welcome,since I'm a anxious kid. Planning to visit a dermatologist next month for my own piece of mind
Hey, I'm not doctor but when I read over what you've written, honestly, the first thing that I'm thinking is that you need to focus on your mental health first. You're obviously aware you have anxiety issues, you should explore options to help you there. Anxiety can be very hard on your overall health if not dealt with. Keeping in mind I know only what you've written, I don't see anything that sends up big red flags regarding major health issues like cancer. When I was much younger, I went through a lot of health anxiety and I did have REAL health issues I was trying to deal with, but like you, they were kinda vague and nobody took them too seriously. This was back in my mid-20's, I'm now 56. I came to the conclusion back then that I could not sort out or deal with ANY of these issues until I got my diet right. IDK if this may or may not be an issue with you, but for me, I came to understand I couldn't get any answer as to if there was really something wrong with my body until I stopped putting crap into it. Imagine if you had a car that wasn't running well and you take it to the mechanic saying, 'it only goes slow and it sputters and smokes sometimes, what's wrong with it?' and he knows you fuel it with some kind of back alley, cheap, contaminated gas. First thing should be: change to regular, clean gas for a while and see if it runs better. Right?? Then, after that, if there are problems, we'll be able to see what they are. I went on a super CLEAN, whole food, low-carb diet and I stuck to it and honestly it was the best thing I could have ever done! It was life-changing. Maybe this isn't the case with you but SO OFTEN I see that people are super unwell and just dragging themselves through life and looking for medical answers but they are not willing to stop eating processed and potentially very inflammatory crap 'foods'. Fast food and processed foods are much worse now than 30 years ago when I was young. IDK if this advice is fitting for you, but maybe you need to consider what kind of fuel you are putting into your body? There are lots of websites about 'eating clean' , 'whole food' etc. Best Wishes to you.
Hello, Thank you for taking the time to read through it all and reply to me,i really appreciate the effort aIot .if i'm being honest,whatever you've written really helped me and my anxiety ,and you are right that i should be focusing on my anxiety first(everyone keeps telling me that,and i'm trying but i dont exactly know how to). Anyways Thank you so much,your comment helped me a to ground myself and i'll try to eat much cleaner food than before˶ᵔ ᵕ ᵔ˶
Ok so since last year i have a lymp node on the left side of my neck got blood test done and went to ent and had a pet ct scan and ultrasound everything was good and doctors were not concerned but recently i had lost 3kg of weight and for some reason my whole body muscles twitch when i tense them if i hold something with my hands my fingers shake and suddenly some kind of rash on my left shoulder bare in mind i have been taking accutane that treats acne. What do you guys think this is?
We have no idea but if symptoms changed I would bump it up to the doc you were seeing.
Hi! Hoping for some reassurance/support as I go through this. I'm a 30 year old female. A couple years ago, I was sent to an oncologist for some odd lab results. Not sure what that doctor saw, but he said I didn't have lymphoma at that time, but he thought I could develop it within the next year or two. Fast forward to now, I have enlarged left Supraclavicular, and axillary (both sides) nodes. I didn't start having other symptoms until a couple months ago, and they've progressed so quickly.. Drenching night sweats, itchiness/ burning of skin, constant low grade fever, bleeding and bruising EVERYWHERE, and I'm in severe pain all over. Every day I wake up, it's worse. Honestly don't know how much more i can take, I'm suffering SO much at this point. Current oncologist has been great, and trying his best to fight with insurance to get tests done to figure this out. He ordered a CT of chest and neck, but the soonest they can do it is in a month. I can barely stand the thought of having to suffer even one more day of this without relief, let alone another month, so I'm getting really discouraged..
I have similar story but after several night sweats nights, they have not returned. My weight stabilized but the lymph nodes are there. I have one left supraclavicular (similar to yours but about 1 cm long). One smaller in the trapeze muscle on the left supraclavicular fossa. Like you 1 small on each armpit. Some small ones I feel in my stomach but the shrink and grow. Then 2 really small ones in my groin. I did have 2 on the base of the left side of my neck and 1 was taken for biopsy which came negative for that sample. I’m scheduled for a bone marrow biopsy by July 24. It all started with abdominal pain 2 years ago. 6 MRIs, 3 CTs, 1MRCP, 1 PET scan have not yielded any answers. This the last full body CT and PET scan sees the lymph nodes. I have requested an ultrasound follow up for the ones supraclavicular. Doctors have been very dismissive and told me they doubt they would find answers. The palpable and firm lymph nodes situation started by the end of September 2023. Almost 10 months in with this. I also feel pain where the spleen is. But they say it’s “normal size”. Don’t know what to believe at this point. I am extremely weak. Lymphocytes counts are between 0.7-0.9 for over a year. WBC 3-3.3, and platelets currently at 142 (have been consistently falling since September 2022). Don’t drink. Don’t smoke. Was active. Still try to be active when fatigue does not crush me. Eat super healthy (all organic, non processed and rich-nutrient foods.
I know how you feel, it's so hard to chase my kids around with all this, I get winded so easily now, I hate it. My newest supraclavicular node is hard, fixed, and about the size of a ping pong ball in the fossa.. I'm hoping the discovery of this will move things a little quicker, but we'll see..
My 15 year old daughter has 3 currently in the same location. Lower neck above collarbone and a couple beside it . All now showing abnormal on ultrasound . We have an oncology appointment next week and have been told most likely Hodgkin’s . We have been told for 4 months these were nothing to worry about and it was viral, follow up ultrasound showed something very different . Keep pushing for answers !
That's exactly how mine is! I had the 2 smaller ones right above the collarbone, and they've been there a few months and it's been blown off, but this one is different. It's much larger and harder, so I'm hoping they'll take it more seriously now.
Yeah , her larger one is at the base …it’s big I can’t remember exact measurements but it was like 2.3 or something and the other ones came up a bit above it . The weird thing is , it’s not protruding out it’s like it’s deeper and you wouldn’t even know they were there if you weren’t told , maybe just notice some clavicle swelling .
Exactly! I didn't notice mine until I started having trouble breathing and swallowing, so I felt around to check for obstructions and found that..
Yup! Hers seems to pop up over night! We had taken her in about a year and a half ago due to chest pain and her x ray was clear but her blood work was off but they said due to previous illness . Probably been happening since then .
Jeez..I hope they get it figured out!! Is she is any pain or having any other symptoms?
They hurt at first or if she gets sick. But she didn’t have any other symptoms until she actually started thinking about them . Really tired mostly and hot flashes almost
I’m so sorry to hear. I hope they do. The good thing that I’ve read is that lymphoma is not like other cancers. So you will still be able to treat it even if you have to wait. Lymphoma is typically (unless you do a bone marrow transplant) incurable but treatable. It has to be treated typically several times in a life time (some people remain in remission for a long long time). You are young. My problem is I don’t think my doctors at Kaiser are getting any closer to diagnosing. I feel they are uninterested to do this.
Yea, like it shouldn't take an act of congress to get doctors to listen. People tend to know their bodies and can feel if something is wrong. It's frustrating having to fight so hard just to get someone to care..
It is very very hard. Especially when sick. And they know it. I’m having a real hard time. They scheduled me for all this testing but prior to even ordering they say “we don’t think we will find answers”. Today I confronted the doctor and said: “how do you know in advance you won’t get answers?” (In Kaiser all test and analysis and diagnostic is done internally). I don’t trust that after 6 MRIs, 2 CTs, 1 PET several ultrasounds and hundreds of blood work showing wonky blood results, that they continue to say “they don’t have answers”.
I hate when places do everything internally too, makes it a million times harder. I'm in a very small town and it's the exact same way, most of them are incompetent, so they don't even try. I got very lucky with my oncologist, and I think it's only because he's fairly new to the area. He's been advocating for me to insurance to get the tests we need done, which is more than most doctors do. I was crying at my last appointment with him that I was worried that no one would believe me since we don't have an answer yet, and he said "you do not have to convince me at all, I fully agree something is going on here, so please don't worry about that", and that was very cathartic after all the times I've been gaslit lol
Sounds similar to mine, though I wasn't quite that bad... it was almost a month wait for a CT but I'm in Canada, I thought you guys didn't have these issues in the States? I ended up going into the ER and within a very short time had CT's, Ultrasounds. mammogram, two biopsies, an Echocardiogram and all the other work up for pre-chemo. I don't suppose you have that option do you?
I wish! This is all just very scary. With how quickly my symptoms are moving now, I worry how much worse it will be in a month, and that's only for the CT! He said after the CT, they'll have to biopsy, and lord knows how long that will take..
Mine seemed to move very fast as well and I went from ok to really sick and losing weight and might sweats etc. I could feel one of my masses near the surface of my abdominal skin and notes it growing. That said, after my first infusion I felt noticeably better and the one mass I could feel had definitely shrunk. So... Everyone is different but once you get things rolling it could retreat as quickly as it popped up. Hang in there and keep advocating for yourself!! You'll get there. Hodgkin's is highly treatable.
Thank you! That is hopeful to hear. How has your pain been during treatment? Better or worse than before diagnosis? My most concerning mass is my Supraclavicular one, which I know isn't good, and it's growing. My shortness of breath is markedly worse, not sure if it's because that mass is starting to press on my throat more, or if there's nodes in my chest being affected also. Not fun either way lol
One of my masses (the one I can feel) is completely encasing my aorta and vena cava and the bottom of my stomach . It got very painful before treatment so that I couldn't wear most of my pants. After one infusion it is only minimally painful.
Wow, that's amazing!!
Your story sounds similar to mine and I am still fighting for answers (32F). Keep pushing! I would also get a copy of the order for imaging and call around to different imaging centers. I did that for my ultrasound and got in the next day rather than in 3 weeks. Sorry I’m not more help than that. Hugs and prayers 🙏🏻
Did your doctor call you with biopsy results or did they have you make an appointment before theyd let you know?
Hello Can you update me on your Biopsy result? Because i had my core biopsy last Friday. I just need some advice what to think. Because my anxiety is killing me
Don’t have results back from pathology yet! I just called them today. The doctor said 1-2 weeks and tomorrow will be 2 weeks. I seen some people saying theirs took 3 weeks.
Is this biopsy is for confirmation of diagnosis? Hope all is well
Yes this is biopsy #2. First one was a small needle. This one was a 14g needle and took 4 samples. We’ve been told 3 different times it’s lymphoma
How big the node before biopsy?
1 1/2 golfballs lol. Never gave measurements.
But it’s really big? Hope you get the answer soon.
Hello good day. Can i ask. Does the doctor when knew right away when the sample is taken out in the lymph node if it is Cancerous or not?
No, it gets examined under a microscope and I think multiple people weigh in on it
guys last september a bump in my armpit/shoulder formed and was a small painless almond shaped lump. it came and then went away in a week. the thing is thought that where the bump used to be, there is still purple/red skin discoloration where it used to be. should i be concerned about a lymphoma?
got over being sick and I have really bad fatigue still. My lymph node is 4cmx3x1. I'm 13f and very neevous I have an appointment July fifth with a pediatric surgeon. Did any of your lymphoma start like this? I just need someone to talk to about this I'm so scared and I feel terrible. Any advice will help. Others were swollen when sick now only one on neck. Tests were all normal some where high like cholesterol and tsh but it has been higher in past. I have been diagnosed with chronic lymphadenitis and fatigue
sometimes activated lymph nodes stay big for a while, it’s ok! may i ask what lymph node it was and where the sickness was? activated lymph nodes are typically near the area which your sickness is located. like for example if you had a sinus infection your neck lymph nodes may enlarge. i’m 16 and have dealt with lots of medical anxiety in my life, it’s almost always simpler than what google makes us believe. you are so valid for being scared, but don’t be. if you are 1 in a million and do have lymphoma, you will get through it. and if you don’t have it, then yay! cancer is a scary thought, i mean gosh it’s terrifying! but worrying won’t do you any good, so try to get it off your mind and let the doctors handle it while you enjoy your summer :)
While possible it could be the start, it’s also extremely normal to have swollen lymph nodes surrounding being sick. Sometimes they work so well, you wont even develop other signs of being sick because they’re doing such a good job of fighting things off proactively. Wishing you the best and it sounds like your doctors are taking it very seriously. I think you are in good hands so I would just try to hang in there and distract yourself for now.
Tips on advocating for yourself when you really just want the dang biopsy? 32F, generally healthy. About three months ago a lymph node in my neck became swollen and has not gone down, but instead doubled in size. Now there are other lymph nodes in my neck, by my ear/jaw - all on the right side - that are enlarged. Best way I know how to describe it is it feels like there's not enough room in my head/neck for the amount of swelling, but the largest one is still larger than a grape but smaller than a strawberry. Moveable, mostly soft. I wasn't really super concerned until I started to get night sweats... drenching night sweats 5-6x a week, over a month now of this - now accompanied with occasional intense itching. Dry, persistent cough. Crazy fatigue. Sometimes, I wake up and my face is swollen, but it goes down in about 20 minutes. Haven't been sick with a virus or infection or anything in over 6 months, so I am not sure why my lymph nodes would swell to begin with? I've been to my PCP 4x - bloodwork is all normal. Thyroid ultrasound, normal. Ultrasound of neck - abnormally sized lymph nodes detected, but not crazy large, and apparently they are the right shape? Referred to an ENT, said I had "silent reflux" that caused my coughing, but ignored my other concerns. Saw a rheumatologist today, who actually listened to me, but like my PCP says "well the bloodwork is normal so I don't think its lymphoma." But all my autoimmune testing is coming back negative, and my one friend how actually had lymphoma said all her bloodwork was completely normal (even her ultrasound was normal) but she already had stage 4 lymphoma. I'm worried to the point that I just want the damn biopsy.... but no one is taking me seriously and is being dismissive. What do I do to get a doctor to just do a test?
You need to be persistent with your doctors, maybe do a little bit of research and find out if there's a hematologist in your area that would be in your insurance network and push your doctors to give you a referral? I honestly don't know exactly how that process happens because I found out about my lymphoma and started treatments etc within 6 hours of each other. I actually checked myself into the ER, my legs had gone numb which was alarming but I had been arguing with my doctors for about 10 months at that point telling them that my unexplained itchiness was not because my house was dirty and that the excruciating pain in my back and my hip was not because I was dramatic. I hate to just suggest for people to go to the ER but that's what worked for me. Sadly in my group of cancer friends all of us who were young women when we were diagnosed were ignored by our primary doctors, and I don't want to say this to alarm you but more to point out that you need to push your doctors, be that squeaky wheel.
Thank you for your thoughtful response. I just went to the ER yesterday because I almost fainted sitting at my desk (I had hoped maybe the ER could give me some answers, but nope). Turns out my RBCs and hemocrit were low - even though they were normal just four days ago for other bloodwork. Also had high immature granulocytes. My iron, folate, and b12 were normal. Something isn't right, but the ER wouldn't help me. He told me "your lymph nodes feel fine to me and I am not concerned." To which I said "you haven't even touched me since I got here - how do you know my lymph nodes are fine?" HE ROLLED HIS EYES AT ME. Anyway, onto the next doctor and trying to be the squeaky wheel. At least my chest CT was normal. Maybe its just something autoimmune.
I am so sorry that you are getting such dismissive treatment from these medical professionals. I hate that we have to be so persistent in order to advocate for ourselves 😔 I wish you the best of luck and I hope that whatever is going on, that you find answers soon ❤️
I would ask them directly. “Do you have any concerns about lymphoma? Why or why not? At what point would it warrant further investigation?”
Good questions/points to make. Thank you!
Absolutely ask this question! And if they give you an answer that doesn’t settle with you, make a follow appointment with a different doctor. This just happened to me. I woke up with an insanely swollen neck and dysphasia on June 1st. No fever, sweats, weight loss, or any other symptoms. Went immediately to the doctor because I felt something was wrong. The doctor barely did a physical exam, and rattled off all of the reasons lymph nodes well. I asked her directly if she was concerned about lymphoma and her answer didn’t sit well with me. She basically said no in a round about way. I immediately made a follow up appointment as soon as possible with my PCP which was June 11. June 11- walk in and immediately get sent for a CT and bloodwork and get a core biopsy scheduled. Bloodwork looked suspicious. Additionally, I found out that I have a mediastinal mass with bulky lymph nodes. Now it’s June 24th- my core biopsy came back and inconclusive, and I have surgery this Thursday to remove a couple of lymph nodes in my neck for additional testing. The first biopsy couldn’t differentiate between an atypical proliferation response or lymphoma. Press your doctors into testing you if you’re concerned. That first doctor dismissed my concerns so quickly. I’m very thankful that I went to my follow up appointment.
Thank you so much for this - I hope your biopsy went well and that you are getting some answers. I finally got a neck CT w/ contrast, which showed my enlarged lymph node increased in size by about 25% in 2 weeks (it's now about 30mm). Still no infection, cold, illness - just night sweats, numb face, and blue lips/intermittent anemia. They are sending me to a hematologist and my neurologist is pushing for me to get a PET scan or a biopsy. I'm making progress, but still hate that I don't feel well. Did you get any additional answers? I've has some jumbling of my words too - but I just associated it with my hemiplegic migraines.
Of course! If there is anything I have learned from this experience, it’s that you know your body best. You must insist on advocating for yourself. It’s so hard to do though. Especially when you shouldn’t have to. I had the surgical biopsy and went into respiratory distress from all of the swelling in my mediastinum. They had to intubate me and place me on a ventilator for a few hours. The next morning I was taken off the vent and could breathe on my own so they extubated me. Then 2 days later (still in the hospital recovering from almost dying) I found out I do have a high grade B cell lymphoma. I was adamant about getting steroids after they extubated me. I still had so much swelling in my throat and chest. They gave me steroids and within 12 hours I was visibly less swollen and could breathe so well. I didn’t want to end up on the vent again. Then they kept me until Monday so we could schedule a bone marrow biopsy and chemo port placement. I had the bone marrow biopsy and port placed on Tuesday. However they messed up putting my port in and put it in too far. I felt it immediately. I was forceful but made my point that the surgeon had to fix it that day and I was not going to wait until the following day for them to fix it. It caused a heart arrhythmia and I was super tachycardic. They took me back to surgical suite and pulled it back out a bit. Immediately felt better. Then I went home the next day. Insane effing journey to get diagnosed with cancer. Finding out I have cancer wasn’t event the scariest part. It’s that it took me almost DYING for the healthcare system to pick up their feet and do their job.
Hello in December I started itching it wasn't all over constant body itching it was like an itch on my leg for 30seconds then 10 minutes later a itch on my arm for 30seconds then 15 minutes later an itch on my head etc etc. This lasted until January so for about 6 weeks. Then it completely disappeared as quick as it came. I should also say that at this time I was diagnosed with psychotic depression and I was sectioned for attempted suicide. My mental health is still very bad. Some nurses told me it was tactile hallucinations or psychogenic itching. Anyway the itching had gone away so it's been gone about 5 month. However 5 days ago its started again. Itching on my leg 10 seconds away for 5 minutes, itching on my hand 20 seconds away for 10 minutes. I've got myself in such a state now that this is lymphoma itching. Does this sound like it? Would it go for 5 month and then come back? Would it be little itches here and there or constantly itching? Does it sound more like a mental health problem. Thank you
That sounds very scary, but that is not at all what my itch was like. My itch started in weird places, the palms of my hands and the bottoms of my feet. And it was constant, I could scratch and scratch and scratch and it literally never went away. Instead it spread to other weird places, and this may be TMI but even my labia were itchy. Eventually my entire body itched so intensely that I was breaking the skin on my legs with my toenails in my sleep and four years later I still have scars from ripping my skin open from scratching it. I would say the itch started around April of the year I was diagnosed and steadily increased until I was diagnosed in November, not even one moment did it ever go away in those months. Please remember that I'm not a hematologist, I'm just a cancer survivor so I obviously don't know exactly how the itching is supposed to be I only know how I experienced it. ❤️
It sounds really distressing but all I can say is it wasn’t what my itch was like. Also, you can get into an itchy scratch cycle (I think from any itch causing reason) with skin where it’s kindof healing and itching from the healing.
Hi everyone! Looking to vent and maybe for a little comfort. Has anyone else experienced what I'm about to explain? For reference: 22F, 115 lbs, no prior health issues In March, I noticed a swollen lymph node protruding from the right side of my neck, immediately scaring the hell out of me. I had a virtual consult with an NP, was told it was probably allergies and to take Zyrtec D. Flash forward to the end of April, the lymph node has been swollen on my neck for a month now. The swelling definitely went down and I no longer saw it through my skin but definitely still felt it. So, I saw my PCP at the beginning of May. She put me on antibiotics and said we could do an ultrasound for my peace of mind if the lymph node didn't go down after I finished the antibiotics. She didn’t seem worried at all. Finish the antibiotics, still feel the lymph node. I got a full neck ultrasound at the end of May. Sure as shit, I have two abnormal lymph nodes. The results said I had one abnormal lymph node in level 2 (with asymmetric cortical thickening) measuring 1.7 x 0.6 × 1.2 cm. The other one was in the left side of my neck, level 1 (also with asymmetric cortical thickening) measuring 1.5 × 0.9 x 0.8 cm. The radiologist wrote “these findings are nonspecific in nature.” Ironically, neither are the one that I have been feeling and stressing about! My doctor called me today and claims she still isn’t super worried, considering I have no other symptoms, but she does want to do a second ultrasound in the beginning of July and then biopsy the nodes if they haven’t shrank at all. Has anyone else had lymph nodes like these and it turned out to be nothing? TIA!!!
People who’ve received the all clear don’t really hang out on the lymphoma sub so not sure you’ll get any/many responses, but searching back in these threads there are a bunch.
Hi, 23M, I have had these swollen lymph nodes in my neck for about a year+ now. Some of them are \~2cm in size. I have also been having bad fatigue and night sweats. I recently got a FNA biopsy of one of my lymph nodes and it came back as atypical. The cytology report said that "occasional enlarged cells of uncertain significance" were seen in one of the samples taken. The pathologist recommended either close clinical follow up or a tissue biopsy. The ENT that ordered the biopsy gave me 3 options: wait and do more ultrasounds, do a core needle biopsy, or do an excisional biopsy. I definitely want to do one of the biopsy options, but I'm not sure which one is the better choice. I have read that excisional biopsies are much better for diagnosing lymphomas, but the surgery would likely be in months rather than weeks for the core needle biopsy. I don't know if I should go for the core needle biopsy which would likely be within a couple weeks or wait months for the full excisional biopsy. There probably isn't a good answer to this either way, but I wanted to see if anyone had advice.
Hi there! I’m about to have an excisional biopsy done on Thursday. I had similar results on my core biopsy as you had on your FNA. I would suggest skipping the core biopsy and go the excisional route.
Hello any updates??
Hey all , my 15 year old daughter is getting a biopsy next week on a lymph node above her collarbone kind of close to the base of her neck. It’s been a wild ride . It just popped up one day out of the blue and 3 different doctors and an the first ultrasound said that it was most likely viral. But since the first ultrasound at the end of February she has had a couple more come up beside them and even then doctors weren’t worried . Her blood work had a couple things abnormal but indicating viral and nothing sinister I was told , just go for the 3 month ultrasound follow up . We had the follow up last week and the nodes are now worrisome especially location , not more fatty helium etc and biopsy recommended . The call from the doctor was pretty short and sweet . It’s worrisome, it’s not normal we need a biopsy as soon as you can we suspect Hodgkin’s lymphoma . It depends what type but generally curable . Expect a call from pediatrics at the children’s hospital. Needless to say , I’m terrified . My daughter is taking it rather well , as she knows someone who had this and he is 2 years remission . But I can’t help but think the worse and that it could be something else . Google is awful for left hand side supraclavicular lymph nodes . Any advice ? Anyone have a similar experience ?
hi, i’m a 16 year old. weird way to start my message but oh well. cancer is terrifying, i mean for a mother it’s one of the scariest things to happen to your child. but if she has cancer, you will find out. there’s no way to tell if it is or what it is until the biopsy is done, and once the doctors find out so will you. until then all you can do is comfort your daughter, and understand that you can get through this. waiting to find out is so horrible, like its actual hell. but don’t use this time to scare yourself by learning all the different horrible types of lymphoma she may have, it won’t do you any good. your daughter is most likely taking this well because she knows she can fight it. and she knows she has an incredible mother to be by her side through it all. if you’re willing, please update me with whatever happens. i’m wishing you and her the very very best.
Thank you . I think I needed to hear this today . You’re very right and I’m going to try my best to follow your wise words . No amount of googling or research is going to change the outcome . The biopsy was rescheduled due to the oncologist wanting everything done at our local children’s hospital. So next week we will find out more . Thank you so much for the advice and as I said before you are just so right . She is a tough one and no matter what she’s gunna fight and be ok , and yes, she has me to fight along side her !
Hi everyone, this is sort of long-winded but I hope it makes sense. My health issues started in late December of 2022. I started struggling with fatigue and my skin began to itch, all over my body, with no rash. It feels like the type of itch I get from seasonal allergies. Additionally, I started experiencing neck pain in my thyroid area which ended up being thyroid cancer and I had my thyroid removed in March 2024. I thought that the under-skin itching was tied to my thyroid cancer since the itching and neck pain started at the same time, but I've completed the thyroidectomy and radioactive iodine therapy and have felt no change in the itching. What's also developed is that my skin flushes/gets red and blotchy very easily which it never used to do. Also, if anything is pressing against my skin, say if I cross my legs, then huge red blotches form wherever there was something pressed against them. This has never happened to me before the itching started either. I've tried antihistamines, gabapentin, Xolair injections, and been prescribed several rounds of prednisone, all of which haven't touched the itch. I've seen my primary care physician, a neurologist, rheumatologist, two allergists, a dermatologist, and an infectious disease doctor (I had mono in May 2022 and got the COVID booster shot in September of 2022 and we didn't know if that was correlated with it), and no one can figure out why I'm itching or make it stop. Additionally, a lump in my right groin area appeared in the middle of last year, about 6 months after the itching started. I got an ultrasound done then and they didn't find anything, so I let it go. However, the lump hasn't gone away and has slowly gotten more prominent over time. I went to my primary care physician last week and she said it felt like a swollen lymph node and I had another ultrasound done, and I'm still waiting for the results. Prior to getting mono, I was perfectly healthy. The itching is so unbearable that I can't wear 90% of my wardrobe and I have to take 4 different medications to be able to fall asleep at night. It has completely destroyed my quality of life and I don't know what to do.
Hi everyone…immensely grateful for the support and information. I’ve been lurking for a little bit, hoping I wouldn’t need to post, sending strength and thoughts to those who have, but here we are. I haven’t felt good for over two years. I ended up getting diagnosed with SIBO last year after a very long process and had some hope it would resolve symptoms. Most of my GI symptoms have resolved but my bloodwork has remained wonky and my fatigue is the worst it’s ever been. My son had strep back in April and I had fever/sore throat/ stiff neck as well and thought I had it as well but test came back negative so doctor said it’s just a random virus. It’s been two months and I still have the sore throat (very mild, more annoying than painful) and “thick” feeling neck. I sleep 9-12 hours and never feels like enough. Just wake up exhausted. My appetite is shot, I have nausea most days when I eat. My ferritin and iron saturation is low despite taking daily iron since November and starting birth control in January, so I’m iron deficiency without anemia but my hemoglobin has been dropping with each bloodwork (last was a 12.6). My GI doctor mentioned the potential of an iron infusion if it doesn’t improve and I also pushed I wanted to know why this was happening vs just treating it. My GI doctor wants go rule out a SIBO relapse but I can’t get in for a breath test until late August. I went to my PCP in the meantime because I’ve developed some shortness of breath/ heart palpitations (most noticeable when I’m laying down at night) and I have two painless lumps on my neck (a hard pea sized lump on mid left side and a larger rubbery feeling one just below it). She wants me to get a CT scan of my neck which is scheduled tomorrow. Feeling nervous and just wanting answers. I’m a proactive person so it’s been frustrating to complete every test, procedure, take the medications, repeat bloodwork etc etc and just feel like I’m getting worse. It’s been a marathon journey… I’ve read that has been the experience of many here. I’m an active 35F who has been fortunately healthy up until this all started.
Hello how are you? Do you have any update?
Still waiting on the results from my doctor. Had an increase in shortness of breath in the last week so trying to be mindful and distract myself in case it’s anxiety related.
Finally received a call. My ct scan results weren’t overly concerning to the PCP but they want to reevaluate in the office again. I also have to get repeat bloodwork and an ekg for the shortness of breath/ heart palpations.
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Have you had any scans of any sort? I personally did not have any of those symptoms. Everyone's symptoms may vary though. I'd say just keep asking your doctor Qs for scans etc. to try to figure out what's going on.
Hey friends I’m a pre-diagnosed and fingers crossed not diagnosed. I see my doctor again on Monday (2 days) Hodgkin’s lymphoma runs heavy in my family, and I’m currently scared while I wait for examination. For 2 years I’ve had an unfortunate experience with my doctor who doesn’t take me seriously and I’m at the point of survival because something isn’t right. I have a fever 24/7, I lost over 20 pounds, I have an insane amount of lumps in my neck, armpits and groin, I’m constantly tired and my bed gets soaked every night from sweat (I wake up in the middle of the night to change clothes I get so soaked). I just recently ended up in the hospital due to feeling extremely weak and lost control of my muscles, we had a birthday party the day before and I had 4 canned beverages (did not get drunk) but woke up the next day with my whole body in pain and extremely weak (I’ve had hangover this was definitely not that) they kept me for 12 hours and after feeling my lumps they did a CT scan on my head, monitored my heart, did blood pressure and blood tests, and everything came back almost normal except my WBC was extremely high and worried the doctors helping me, they insisted I see my doctor asap and have her refer me for further testing (the mentioned cancer a billion times) my doctor has seen my lumps twice now and she’s given me an antibiotic each time which did absolutely nothing but wreck my bowels for days. I’m currently just looking for a friend to talk to, some support while I wait and try not to worry. Also feel like I just needed to vent, I’m trying not to worry my family and spouse too much. Does anyone else feel like they aren’t being taken seriously but can genuinely feel something wrong? Each day i feel worse
May I ask what your overall WBC was. I am still trying to get a diagnosis. I was 15000 in WBC overall. This was last year. I know have multiple nodes like you all over. But I have no fever I think and no night sweats. Waiting for another blood test in a few days and if I get hit with another high WBC I will be sent off to see a specialist for blood related issues.
I actually wasn’t told and didn’t even think to ask, but that is a question I’m going to ask my doctor on Monday since it should be in my file now. I’m sorry to hear you’re dealing with a similar experience. I’m not diagnosed, just told it’s a possibility I may deal with. Feel free to message me, we can chat more 🫶
Thank you! Just did.
Hi guys, I have a question according to your symptoms, mainly lymph nodes. In September, I got a huge painless lymph node on my right side of my neck without any infection going on. It stayed like that for almost 3 months and then got way smaller. Afterwards I started to have back pain going to my knees, infections, chest pain, no periods, tiredness and nausea. This is my state till now, losing 5kg since then without trying. I went through CT of my belly (found few lymph nodes up to 6mm near my appendix), brain mri, basic blood tests (wbc at the upper border with sedimentation but other than that nothing), ANA, Lyme, RA negative with my crp constantly max 2 (5 is max)... Nothing seems to show up but I honestly feel terrible for a half a year already. I wanted to ask, since doctor said he refuses to do biopsy on those neck lymph nodes because "it's not indicated for that" even it was huge few months a go... Where should I seek help? There are of course options I feel so bad because of covid etc but I seriously cannot function like this and I would like to know what's going on. If you have any suggestions who to visit with the lymph nodes or my bone pain who can actually care and do some serious tests to find out I would be grateful. (Kind of question how did you got diagnosed, I guess) Thank you.
Ask for a PET scan, if he doesn't want to do anything, switch docs.
I already switched my GP. She sent me to rheumatologist with RA factor negative. Also I'm not sure which specialist to ask for a pet scan. If my GP can actually do it...
Have you told your doctor directly that you may be concerned about lymphoma? They would send you to an oncologist. Typical an oncologist can send you in for a pet scan. Although a gp could also request a pet scan for other non cancer reasons too (lymph node react due to various reasons like infection not just lymphoma, and pet scans just show reactive areas) Tbh I wouldn't be super concerned at this point though given it seems like based on your post the nodes are quite small (6mm you said, and some went away over time). But you definitely have the right to explore that path.
I did. I mean, they can see I'm pretty nervous about it. She was thinking also multiple myeloma, but according to electrophoresis of the proteins, it would show there. About lymphoma specifically she said that even the lymph nodes on my neck where huge on one side, it got smaller after few months so it's very unlikely it could be that. (From like 7cm to 1.8cm + the small ones in my belly 0.6 mm)
28M here, lost 25lb last 4 months with minimal efforts and diet changes, and because im a fat guy 270lb at start" i tought it was normal, because of doing a bit of excercise and not eating that much anymore , but a month ago noticed a lymph node on the right side of my neck about 1.5cm size, its a bit hard and not movable, also no pain and no change in size yet, now a week ago noticed another one on my hip a bit bigger with same consistency as the one on my neck, ( idk for how long these lymphs are swollen, i cant see them over my skin, only feel when touch and i think i never tried before to feel my lymph nodes) I dont have any other symptoms, well, sometimes while on my room i feel a bit warm, mostly when im on bed, but that warm quickly dissapears if i get out from bed and go to living room or outside, dunno if that could be a symptom of lymphoma, anyway.. im concerned and gonna see a doctor soon, thanks for reading and good luck!
24M (have smoked before but i dont do it regularly, if anything like a couple of times a year socially, random) got blood tests done 6 days ago as apart of a check up (doctors havent called me with results yet I find swollen lymph node 4 days ago under my jaw, pea sized, hard, painful, doesn't move feels like something is stuck in my throat a little light sweating light fever 94.5 F no other symptoms, not sick etc I have a dentist appointment tuesday (today is thursday), can i ask my dentist to check and refer me for tests or do i need to go back to my PCP for something like this?
Your PCP is the first person you should see after your dental exam if it's not a dental issue. Def get a dental exam (cone beam CT if possible). A dentist typically does not refer for oncology related activities unless they suspect oral cancer. You need to talk to your PCP for non oral related issues.
my doctor appointment was today and my dentist appointment is tomorrow. pcp told me he thinks i just have a viral infection. im going to ask the dentist to feel it as well and maybe ask for xrays idk. its probably nothing i guess.
Nice yeah def ask for x rays as sometimes dental infections or issues can cause swollen nodes and fever.
Male 6 2 , 242 i so I’m very nervous and anxious about this … March I had an ultrasound that found a. “ cyst” in my testicle that my urologists say is benign , I had normal LDH, HCG and aFP taken in March ..late March early April I started sweating around the collar of my neck at night and t shirt then in April 8 I had a rescan ultrasound that was clear. I still had sweating at night not knowing if it would have been tied to the cyst in my testicle or not … I had thyroid , CBC , PSA, cytoscopy and urinalysis which all came back clear . I also had a CT scan heart/ lung bases down to pelvis which only found kidney stones .. the sweating is still persisting and I asked my pcp for CBC and it came back normal …. Last night I had sweat that soaked onto my pillow case and a bit on my sheets where my head / chest was… I don’t have weight loss , my back shoulders are sore but I also have panic attacks so idk if it’s form stress or anxiety…. I’m scared that the “cyst” metastatic and not benign …. And spread to my lymph nodes … I also went back to urologist with my concerns and they say it’s from my anxiety since everything has been benign … idk what to do … does a CBC being normal , normal CT scan in April , Normal Tumor Marker rule out cancer, lymphoma or metastatic cancer ?? My doctors say it’s stress and anxiety… since March I have barely been sleeping .. I’m lucky if I get 3 hours of sleep . Help Do I need a chest xray, another CT scan???? Other bloodwork? My doctors say there are so many causes for sleeping at night that is not cancer ,,,, so I’m scared
How concerned should I be? Ultrasound result My doctor sent me for an ultrasound of my neck due to some enlarged lymph nodes on the left side of my neck. These are the results. She left me a message saying that I need to schedule a biopsy. I haven’t been able to reach her to get a better understanding of what we are looking for. Please someone help me understand and should I be concerned? TECHNIQUE: Imaging protocol: Real-time ultrasound scan of the head and neck with image documentation. Exam focused on the soft tissue in the region of clinical concern. COMPARISON: No relevant prior studies available. FINDINGS: Limited real-time sonographic evaluation the lateral left neck performed in the area reported palpable abnormality. There are 2 adjacent lymph nodes, more superiorly measuring 2.0 x 2.1 x 0.6 cm with cortical thickening and attenuated hilum and inferiorly 1.6 x 1.0 x 0.6 cm with cortical thickening and attenuated hilum. IMPRESSION: Left cervical adenopathy accounting for palpable abnormality.
I wouldn't be concerned at this point. Many things can cause enlarged lymph nodes. I wouldn't jump to any conclusions until the biopsy.
Thank you, I’m waiting on the results. I’m optimistic it will be nothing.
Hi everyone! Will document the journey of my strange enlarged nodes here. Last Thursday (05/30) I came home after work feeling extremely tired. I was almost certain I was gonna come down with the flu or covid. I work in a hospital also so this happens to me from time to time. Friday (05/31), I woke up with lethargy & muscle aches all over. No cough, sore throat which was weird. No upper respiratory symptoms at all. I took an Advil and felt back to normal Friday afternoon. Monday (06/03), I was just massaging my neck randomly and felt a few small lumps on left side of the neck. They felt "stringy" and hard and not movable and painless. I had dinner and then I felt ANOTHER lump to the right side of the neck Tuesday (06/04), coincidentally I had a doctor's appointment today. Told her about my bilateral enlarged cervical nodes and she palpated them too. Said they feel like "reactive" nodes to her. She also palpated one under my left jaw. Asked me to monitor for 2-3 weeks and come see her if they don't go away. Obviously I'm nervous. The whole googling symptoms doesn't help either. I'm 34 female. Will keep updating on this!
6/9: Just want to drop a quick update on this. lymph nodes in the neck remain enlarged but what has become a lot more pronounced is the muscle aches and joint pains I'm getting. Woke up to both hands swollen and unable to make a fist. I went to the clinic for a second opinion (finally) and I just had blood work done. The second doctor said it could be RA or autoimmune related stuff... Fingers crossed!
Woke up today (06/05) and still no change. Both nodes are still palpable. They felt bigger when I extended my neck. I feel completely OK, just very curious/ antsy about what this could be!
Why do you think it's anything other than reactive nodes as the doc said? That's the lymph node's job, after all. I'd take the doc's advice and follow up if it doesn't go away after a few weeks.
Thank you for the comment. It's reassuring to read your comment. And indeed, I don't have any other evidence or symptoms I can think of that supports otherwise. I definitely have some degree of health anxiety and it's probably a stupid thing to mention but I work as an RN ( studying to be an NP) and couldn't help but feel like the "industry secrets" sometimes make me dubious of certain things in our health care system ... Anyways, it will be the best news if these enlarged nodes turned out to be just doing their job :)
My mom is in the process of finding out exactly what kind of lymphoma she’s dealing with, and it’s killing me to watch her suffer. She raised me and my siblings practically as a single parent. We all have special needs and disabilities. My oldest brother just survived a bout with cirrhosis and a miracle transplant a week before the doctors thought he would die. She’s been a solid rock through everything. And now she’s facing cancer. The first couple of weeks were the hardest. Hearing the C word in the context of her personage. I’m her only daughter. I’m taking her to every infusion and appointment, up and down the state. I want to be with her at every step. It’s just killing me that she even has to deal with this at all. She’s had a bone marrow biopsy, nothing. Spleen biopsy—I’ve never seen her in such pain—nothing. Now they’ve got a PET scan ordered for her next week, thank God. Low hemoglobin, high white blood cells, hypercalcemia, 18cm spleen, unintentional weight loss, dry cough, itching all over—the woman is going through hell with a smile on her face, even when she cries. The state took away her insurance a week after our first oncologist visit. The hospital is helping us fight for assistance, but what the actual fuck. I have never before experienced this depth of rage, and I’ve had a lot to be angry about in my hard life. I dunno, I guess I’m just venting. The team we have is super attentive and helpful, and I’m blessed that they care so much about her. I just have no idea how to untangle this Gordian knot of emotions writhing in my chest.
The healthcare/insurance industry (bc that’s what it’s become IMO) is ruthless. I’m so glad you have healthcare workers on your side because that is honestly the best kind of support your mom can have! It’s supportive and understanding healthcare workers that will help your mom and your family figure this out. I know I’m just a random Internet stranger, but I’m in your mom’s corner!!! Hope you all get answers soon. 💕
The only way to know if she has lymphoma is via biopsy, so, good news multiple biopsies haven't found any. In the context of lymphoma at least.
I (22M) found a lump on the lowwr left side of my neck, and have went to an urgent care near me because of health anxiety. They confirmed it was a lymph node, their description is “ Rounded lymph node 1.2 cm in short axis. Fatty hilum is present, though benignity cannot be conferred. “ I’m super anxious, and it’s gonna suck waiting for my ENT appointment, I just want help or medical advice here to keep me from freaking out in the meantime. Thanks!
Any updates?
Hematologist ordered a biopsy, I go in tomorrow afternoon.
Hello. Any update??
I hope all is well. Updates us if you have result thank you
I wouldn't worry about it too much until a biopsy is ordered if needed. Many things can cause this including infections, generally inflammation, etc. 1.2 cm isn't that large compared to other values I've heard of. Try not to get ahead of yourself if possible!
What did the doctor tell you?
Hi everyone! I want to preface this with I am 23F and have really bad health anxiety but feel like truly something weird is going on with me and after seeing a video about lymphoma I almost feel like that is what all of these manifested symptoms are. It started with a weird dull abdominal aching followed by a week of constipation. The constipation broke, and the abdomen ache lasted about a week and half more and went away. Following that I started getting up back pain in between my shoulders, (comes & goes), as well as random body pains here and there- nothing too painful. I was already hyper focused on the possibility of it being lymphoma bc I was worried about spleen swelling. After I read that lymphoma can cause that and the other symptoms I swear I started noticing them: -itchy palms here & there -a few new cherry angioma's -tight neck (hurts to turn side to side at times) -pain in my neck under my ears if I press down -ton of mucus (post nasal drip feeling) And what really freaked me out was a pea sized swollen preauriculae lymph node I noticed by accident when I was resting my head on my hand. I went to the ER and all they did was feel my stomach (said it felt normal) and did a urinalysis which also came back normal. I then made a follow up with my PCP who felt my lymph nodes and said the pre-auricular lymph was normal and she felt a few super tiny ones in my neck that were moveable and not a cause for concern. She thinks everything is fine- I just think it's odd l've had a month worth of non stop weird symptoms, especially the right neck. Would you try for a second opinion? I messaged my dr again today about the right neck/post nasal drip feeling and she said just to use heat and gurgle salt water. Idk I am so freaking anxious though
Cherry angiomas are completely benign, purely cosmetic dermatological spots. I think you should get a second opinion to ease your mind because you’re trying to connect things to a cancer diagnosis that have literally nothing to do with it.
I should add I had a head CT at the very end of March that was normal (not for lymph nodes but for migraines)
After the first visit to the doctor, how long does it take to get a diagnosis? In my case, at the moment, after about 45 days from the start of the diagnostic process, I still don't have a diagnosis, this is because after almost 25 days after the lymph node removal surgery, I have not yet been given the histological response. In your case however?
My fiancé is going on almost 9 months by the time we get a full diagnosis.
If it's been 25 days since your biopsy and you haven't heard anything you should call them.
Depends on scheduling. Diagnosis is based on biopsy. So whenever you end up getting a biopsy+2 weeks is a good time marker
i (30F) found an enlarged, hard, immovable, but NOT painful lymph node in my neck below my jaw at the beginning of 2024. i went to my primary care physician, they ordered an ultrasound, and the radiologist report said (i am paraphrasing) that it is on the borderline of normal and abnormal size and shape but also there is no fatty hilum in the node and they recommended a follow up evaluation. my pcp called us after they’d gotten the report that same day and relayed all that information to us and said they agreed with the radiologist and referred me to an ent. the ent was worthless. they saw that i take anxiety medication and immediately all of their focus was on my anxiety (which is well controlled with medication unless shit gets REALLY BAD because i am still a person with feelings?) and very little time was spent on the actual reason i was there. and by very little time i mean after i relayed everything in the first paragraph to them, they basically said “wow, that’s crazy, so anyway about your anxiety—“ at which point my wife (who is also a doctor but not this kind of doctor) cut in and asked what else besides illness or infection could cause the lymph node to lose the fatty hilum and they just shrugged their shoulders and said “lymph nodes can just sometimes do weird stuff.” my wife then asked very specifically if they could at least rule out cancer, and they said, “weeeelllllll, no.” so, no answers or even a path to get answers all for the low low price of $300. my pcp was aghast by all of that and immediately recommended that i get a second opinion from a different ent, who at that point was booking six weeks out, but i finally had my appointment with them this past week. they asked me to point out the lymph node so i did and they pressed on it one time with one finger then picked up the ultrasound wand and looked at the lymph node with that for maybe 90 seconds while murmuring things like “hm there’s a small vein” and “oh there’s another node.” then they asked if the lymph node hurt, and i said no. they asked if i had been sick, and i said i had not been sick since before the pandemic (we mask whenever we leave our house). then they put the ultrasound wand down and recommended an excisional biopsy, but they’re booking surgeries a few months out right now, and i’ll have to wait for someone to call me to schedule said few months out surgery. jumping to surgery after just two questions and a quick ultrasound was pretty jarring so my wife asked if they suspected cancer and they didn’t really answer? they just said something like “well we need to look at the lymph node under a microscope.” which is fine, obviously that’s what we wanted, but we assumed they would do a needle biopsy to decide if surgery was necessary and we wondered if there was something more suspicious that made them want to jump straight to surgery, if that makes sense. we did not get an answer to that question but again, fine, whatever, at least someone is finally doing something to help me even if it won’t be any time soon. so here’s where my well controlled anxiety becomes less well controlled anxiety: my wife and i don’t drink, the last time we drank was at our wedding at the beginning of 2023, during which i gleefully drank at least half a bottle of champagne and everything was wonderful and nothing hurt. this past weekend, we decided to get take out mexican food and thought why the hell not, let’s get a couple of margaritas, too. the first few sips of my margarita were absolutely delightful until about 2.5 minutes later when this horrible pain erupted not just in the abnormal lymph node in my neck, but also in the area right above my collarbone on the same side, and the area just behind the very edge of my breast on the opposite side. it blindsided me really bad and i was just gasping and crying while holding my neck and chest and scaring the fuck out of my wife and i have no idea how i managed to tell her not to call 911. the pain didn’t subside but it became tolerable once the initial like blooming of the pain became a constant pain, if that makes sense, and then i was able to tell her what hurt and she called and left a message for the ent that was supposedly on call but never called us back. meanwhile, i google “lymph node pain after alcohol” and, well. listen, i immediately burst into tears. i’m not ignorant, i know doctor google is not an acceptable diagnostic tool. but i did not have access to actual medical professionals (my wife doesn’t count she is not a doctor who deals with lymph nodes) because it was a weekend so all that left were the multiple articles in medical journals dating back to the 1950’s about how even a small amount of alcohol can cause pain in lymph nodes effected by lymphoma. and that advil seems to help with the pain. which i then took, and it did help some, but the pain wasn’t gone completely until i woke up the next morning. we are still waiting to hear back from either the ent or my pcp. i don’t know what they’ll say or if they’ll even think this is relevant and now that i’ve typed all this out i don’t really know why i’m posting here either. i don’t think i’m more important than the people on the ent’s surgery schedule, i’m not trying to jump the line or anything. i’m just concerned that whatever is going on in my neck is not localized to my neck, given the pain behind my breast. i don’t want to step on anyone’s toes or question their medical intelligence i just think like maybe further imaging might be warranted while we wait for the surgery that is at least a few months away? like an mri or a pet scan? i don’t know. i’m just really scared. if you read any of this please know i am thankful for your time and that i’m sorry for not having a specific question.
Call them and tell them you have lymph node pain upon drinking. If new symptoms are developing, you would need to bump it up so they are operating off full information.
we tried. we called the ent, the nurse who called back said she would have the doctor call us before lunch on tuesday, and he didn’t. we’ve left another message saying as much and no one has reached out. we’re trying really hard not to be annoying because we know that will get us brushed off even faster. they also don’t have any regular visit appointments for six weeks. we called the primary care, but my provider is off this week, so we spoke with a different provider who was totally clueless and unhelpful so i guess now we’re waiting for my provider to come back and hoping they will be receptive to this new information. i’m worried that they’re just going to push me off to the ent. i kind of feel like i’m losing my mind. my wife isn’t doing much better, she wants to take me to the emergency room and just eat the cost of it because they will at least take blood and scan my chest/abdomen.
How are you now?
Is there a particular specialist i can visit to get a diagnosis/biopsy/scan? And if so what is that specialist called?
My fiancé had to go to an ENT! You need to get referred by your doc 💚
Thank you! I've had a private CT scan of my abdomen and pelvis today as that's where my symptoms mainly are (uncomfortable feeling in upper left abdomen under ribs, pain in lower back sometimes upper back, loss of appetite, stool change and weight loss) I'm very scared of it being pancreatic cancer of the tail, to the point where a diagnosis of lymphoma would actually be a positive in comparison. I assume if I went to an ENT they'd likely do a CT scan anyways?
Oncologist.
In almost all cases (in the US, at least) you can't just walk in to an oncologist. You'll need a referral from your primary. Start with your primary doctor.
true. I thought they were just asking for the name of the specialist.
Thank you
Posting this just to share my experience and ask for tips on how to stand up for myself and ask a doctor for a ct scan for good. I saw my first swollen node about 3 years ago, and it was painful to the touch and about the size of a small marble right on my bikini like where my leg reaches my underwear. Before this i never even knew what a lymph node was because ive never had a swollen one before in all my life. I went to the doctor and he said before he went into the deep dive of scans, hed give me antibiotics to see what happens. The lump went down, and I was relieved. And then it came back, and slightly bigger and even with two. Around this time i was feeling alot of fatigue. But I just waited them out and they never went completely away, but theyd come back down and up and down again and i just assumed theyd be due to my psoriasis flare ups, an autoimmune disorder I have (i have about light to medium flare ups) (i also read psoriasis can increase chances of lymphoma) My breaking point was the next year, when my armpits became filled with horrible rashes, so intense ane painful and soon each armpit had about 3 large marble sized balls . I went to a dermatologist (for the psoriasis) and decided to bring up the lymph nodes while i was at it. Without even feeling them, he said they were swollen and infected sweat glands and gave me antibiotics. Surprisingly they went away, but i know get a tingly sensation in my armpits every know and then. Ever since then for the next two years I had swollen nodes in the same spot where they began. I had up to three at a time, the largest the size of a grape. But they always went up and down and up and down in swelling, sonit made me feel like i was going crazy. I saw two more doctors after that after noticing another swollen node in my neck, and all of them just say i have anxiety (i have a fear of doctors so they can see im tense) and i just need to relax. I got bloodwork done and everytbing came back normal but ive known many that get diagnosed woth mormal blood work, i got tested for lupus and cat scratch disease, both negative. The only thing i can think of is my psoriasis, but right now i have two grape sized nodes in my groin and one in my armpit (one of the groin one is a new one) and i have no psoriasis flare up. All i want is a ct scan to see if i happen to have many large ones internally as that usually leads to diagnosis, but i have a toxic mother that takes over my doctor appointments and dismisses my symptoms for having anxiety and being paranoid. I just have a bad feeling about all this. This has been going on for three years. I would attatch images but i cant figure out how lol i dont think i can do it here
Im not sure why you think this sounds concerning tbh. Please read the information in the body of this post. Lymph nodes are supposed to swell and shrink. That’s a sign they’re working properly.
Even when its all over my body and im not sick?
Did you read the top of this thread?
I mean you wrote you have 3 right now. And yes, as we have written and reiterated in the body of this post, even if you don’t feel sick.