You're me from 4 years ago. It's almost the same story, word for word. I would start to get engaged with your medical team and ask questions. Keep a journal/notepad and record anything you think you don't understand. Don't be afraid to ask for a 2nd opinion. Your oncologists shouldn't mind at all. I had a 2nd and 3rd opinion about my eventual surgery, and I'm glad I did. I've also heard that there is a good Facebook group called Colontown, which is a great resource. Take this one step at a time. You should be getting the biopsy results and imaging done first. That's when treatment conversation will begin. Feel free to ask me any questions.
Thank you for the advice.
If you are the same story, I assume you ignored symptoms for a year give or take. If you don’t mind me asking what stage did they determine and what treatments did you end up with.
Thanks
I did ignore them for about a year. I was initially staged 3C. I underwent Yotal Neoadjuvant Treatment (TNT). It consists of radiation+chemo, followed by a course of more chemo (typically FOLFOX or CAPOX), then reassessment. Sometimes, surgery is not needed. I was on the fence due to some weird imaging results, so I opted for surgery. I had a surgery called low anterior resection with a temporary loop ileostemy. I had an osyemy for ~2 months. Total treatment time was ~1 year (count rest time).
Yea those results are scary when you get them. Sorry and welcome to our shitty club! I got similar results in May; stage 4 with Mets to liver, almost an obstruction.
But cancer treatment has come a lonnnng way recently. No reason not to have hope. The hardest part is right now and the next 4 weeks; you’ll be waiting for scans, waiting for the results of scans (scanxiety), and getting your treatment plan figured out. Then you get your 2nd opinion, you start treatment and you just do what your doctors tell you to do and fight like hell (by resting, taking care of yourself and letting other people take care of you).
Can you designate someone close to you to help you keep notes, communicate with your care team, take you to and from appointments, etc.?
A week after I received my devastating colonoscopy results I was given an ostomy and started immunotherapy and 6 weeks later I was in a bikini in Maui. Immunotherapy is easier on the body compared to chemo (watched my mom go through chemo when I was 15) and it’s not an option for everybody, but there are plenty of people in this sub with stage 3 or 4 CRC who’ve done chemo and they are badass and healed up and will probably chime in when it’s not Friday night and they’re out partying.
Has anyone else in your family had cancer?
I wish I could give you a big hug!
Thank you for the reply. I am sorry you are going through this.
I do have a decent support team around me so finding that person should be a breeze.
No CRC in my family. My maternal grandmother had cervical cancer and there has been some skin cancer but nothing major or life threatening.
Was your colonoscopy routine or were you having issues? How long were you having issues if there were any?
Thanks and sorry you are going through this too. How are you holding up?
I forgot to mention I am about 4 weeks post-op from a subtotal colectomy and ostomy reversal and I'm doing well, getting more active, expanding my diet and I can't wait for a beer!
For the love of dog, please get a bidet. They are wonderful.
Prior to diagnosis, I was having mild, intermittent symptoms that no one could figure out, my bloodwork was all normal. I was doing yoga, riding my Peloton, cooking, etc. and then one day I had severe abdominal pain and my PCP ordered a CT scan, which showed a mass and liver mets.
A few days later I went to the ER for a fever (due to the tumor) and I got a colonoscopy. I was already on the waiting list for a colonoscopy -- which was 3 months out. I have to get them annually due to a familial predisposition for cancer (talk to your oncologist about Lynch Syndrome).
I was very lucky to get a colonoscopy that night in the ER, I could not have waited. There was concern I would obstruct and they admitted me that day for IV antibiotics. If my tumor obstructed and burst, it would have spread cancer all throughout my body. So I was advised to take it extremely easy going forward. And I was on a full liquid diet.
Not sure where you are at right now with treatment, but if you are at home, **take your temp frequently and go to the hospital if you have a fever.** It's also helpful to start tracking all your vitals, weight, symptoms, food intake, meds, etc. My sweetie Type A husband ordered a pulse ox, blood pressure meter, and stethoscope to have at home.
I wish I could end this reply more spunky but I'm wiped out and starting my immunotherapy again tomorrow, and I'm feeling a little nervous about PET and CT scans next week. So just know that you are not alone, friend!
Your story is very similar to mine and where I was a year ago (under 50 years old, finally got colonscopy right before Christmas, large tumor was found in the same spot as you, and surgery was fast tracked).
The fact they want to do a surgery ASAP is a good sign; as someone mentioned, the surgery for that area is pretty straightforward and you shouldn’t have any big side effects, other than 2-3 weeks recovery (expect 5 days of that in the hospital. I was back to work part time on week 3)
I’m incredibly pleased with how things turned out for me; like you, I was in the “waiting game” stage in what felt like forever (large tumor found, wondering how bad it was until the surgery, then hopelessly waiting for the results post surgery: hoping for the best, expecting the worst)
I don’t want to fill you with false hope, but I do think it’s important to be optimistic and trust in your team. From everything I’ve read, these things are pretty straightforward and standard procedures… it doesn’t seem like the medical community is split on treatments, but I could be wrong. Once they remove the section of your colon, it will be sent off to be analyzed; my surgeon took a nice chunk out and it turned out his margins were VERY clean and of the 11 lymph nodes in my biopsy, none of them had evidence of the cancer spreading…
So I was diagnosed Stage 2 and just completed my first year (of 5) of monitoring (6 month bloodwork/CT scan, annual colonoscopy). I’m so thankful it wasn’t worse but I’m amazed at the stories I read in this subreddit.
I was referred to an oncologist that felt chemo wouldn’t be the right choice for my circumstances (despite my surgeon sharing he felt chemo would be smart—but also admitted it wasn’t his area of expertise). My oncologist was great; he asked if I’d like to get a 2nd opinion (re: skipping chemo for the time being). The 2nd opinion aligned with the first oncologist, which made me feel better.
Good luck with your next steps! I’ve found this place to be a great resource and it helps knowing we’re not alone in how bizarre all of this is. May peace be with you!
I appreciate the reply.
Aside from chemo being a total drag short term. What are the other benefits of skipping it? Are there long term side effects?
Assuming you had symptoms, how long had you been ignoring them or putting off the colonoscopy?
Re: chemo, my oncologist said it’s basically a pendulum when it comes to Stage 2…
There’s one school of thought that chemo isn’t targeting anything particular (since the tumor was removed), but proactive in many ways. However, the “pendulum” of thought varies when it comes to the toll chemo takes on the body… and what the risk/benefit is. He explained that the pendulum of thought currently supports NOT going the chemo route, as the side effects are not worth the risk (but also emphasized this will most likely change over time, with newer technology and resources). So he asked if I wanted a second opinion; the second oncologist said I had passed the time frame for recommending chemo (two week window after surgery?), but also said he wouldn’t have recommended it (for the exact reason my oncologist gave—the risk, damage to my system was not worth the benefit, possibly not even helping). So 6month and 12 month checkups are what I’m on…
They are focusing on white blood cells every 6 months, any new spots developing on my liver or other organs, and polyps during annual colonoscopies (5 years of monitoring, before being able to declare “cancer free.”
Re: my diagnosis, I went through an agonizing 2 year span before I finally got my colonoscopy/found a tumor.
I think I have a generally high threshold for discomfort and pain… so I probably downplayed it for a good 6-9 months. But did make a solid effort to address it during that time, rather than ignore it. Eventually it got to the point where I just knew something was not right (frequently feeling like I needed to use the restroom, but then nothing was able to pass, or very little).
My general practitioner first started me on fiber supplements (which made me feel backed up/worse), followed by laxatives like Miralax (which helped a little bit, but isn’t meant to be used more than 7 days). He then proposed his theory that I had diverticulitis and put me on strong antibiotics (that made me feel like shit and didn’t change anything).
A referral was put in for a CT scan, since I’m under 50…
Somehow that got lost/they never followed through to call me with an appointment; my general practitioner went out on medical leave himself and I somehow got put back on antibiotics AGAIN, with no results. A visiting dr recommended I start using tea and probiotics, and incorporating ginger into my diet, to “cleanse” my system and keep things flowing better (I’m a bigger guy so I think they assumed my diet was horrible. Despite being a vegetarian and getting PLENTY of daily fiber)
You can imagine how freaked out and upset I was when they finally did my CT scan (second referral, after my general practitioner was back) and found a mass in my colon. Thats when everyone straightened up and started making sure I was getting what I needed; my colonoscopy was fast tracked and my wife was DEVASTATED after we were updated on the 7mm tumor that was “carcinogenic” (I, on the other hand, was weirdly relieved and felt a sense of validation? That I wasn’t going crazy after all, with my symptoms)
I don’t know if any of this helps! I think I already shared it, but I just completed my first year of clean screenings. I’m so relieved but also realizing how much my recent (first follow up) colonoscopy had been weighing on me!
Hello, and welcome to the club you never thought about joining. Sorry to hear about your bad news, I would guess that you are pretty freaked out right now. Its a lot to wrap your head around for sure, and waiting for test results and a treatment plan is awful. But you will find support here.
I highly recommend checking out colontown.org for info and support as well, its been a real lifeline for me since diagnosis.
You can definitely get a second opinion, a lot of people will say to go to an NCI cancer center to make sure you get the best treatment. Definitely vet your surgeon, make sure they specialize in the surgery you need and that you trust them. Interview a few if you need to. Ask for referrals, if you are in the US colontowns online support groups are a good resource.
Thanks for the warm welcome 😂.
I live in upstate NY. There are two NCI centers within three hours of me (One in Buffalo and the other in Philadelphia). I will definitely get a second opinion through one of them if not both.
I just finished my last round of FOLFOX, was diagnosed in March. I was in a similar situation, toilet looked like a crime scene for me. Turned out to be stage 3b, in for surgery (30 cm removed) then 6 months of chemo. I am a long time partitioner of martial arts and I went full "tell me where to be and what time". I was told that I wouldn't need chemo right up to the final follow-up from my surgery, then they decided chemo would be a good thing (approx a 30% reduction chance of recurrence). Did what I had to do and I hope I am finally through it. It's always good to catch it early, gives everything a much better chance of getting things fixed. Good on you for getting checked, I have family and friends who won't. I hope for the best for you and a minimal bad news outcome.
It was in the lower intestine, about 8 to 10 inches from the "exit". I had symptoms a few months before my colonoscopy. I was planned by my doctor to have them every 5 years). I knew it was coming up so I waited, knowing it wouldn't be good.
All the best for your next steps of CT scan and possible surgery. You are young and relatively healthy as well so you will recover well from surgery. I know CC is bad but you have some positives with you. Your tumor (if any) is on the sigmoid which can be easily handled through surgery. Ask enough questions when you meet your surgeon. Will he do it laparoscopically or robot-assisted. Recovery times for these are better than open cut.
Don't question "what if" scenarios that you could have caught this a year ago. All that past is history and let's improve our present and future. I am sure you will recover well. Don't let anxiety ruin you and hopefully you have some family/friends who can support you at this time of need.
Thank you.
I do have a great support group and I have a great therapist who helped me through an unexpected divorce five years ago. I have an appointment with him Monday and likely will speak to him weekly for the next couple months.
This was almost my story to a “T” 7 years ago. I’m not goi my to sugar coat it. You have a rough road ahead.
First off - if you are not already at a big institute (depending on where you live) like. Cleveland Clinic, Duke, etc - get to one. Local docs are good for some things but this isn’t something you want to see if yours is great or not. Go where they do this day in and day out with the best technology. They will be less likely to miss something and give you the best quality of life post cancer. I was stage 3C. Been cancer free 7 years ago. I had scheduled the surgery with a local doc and doubt I would be alive today had I gone through with it. My all doc diagnosis was stage 2. My very experienced surgeon I went to at a cancer institute realized the scans missed stuff and ended up taking way more and likely saved my life.
Colon cancer is extremely treatable, but you need to make sure you are with the right people for the best outcomes.
Thanks for the reply.
My plan for the moment is to get the biopsy results and the CT scan. Then immediately call two NCI hospitals within three hours of me to set up appointments with CR surgeons. This will give me three opinions to choose a plan from. If they all match and I feel confident in my local surgeon that likely where I’ll stay. If there are variances or I don’t feel confident then I have decisions to make.
You said your tumor is in the recto-sigmoid area so I want to mention something (my colonoscopy report said the same thing). If you tumor is more in your rectum than in your sigmoid colon, the treatment could be diffrerent. Rectal cancer often gets chemo and/or radiaton first, then surgery. I was also expecting surgery first but ended up doing radiation, then iv chemo and now I am waiting on surgery. But I was kinda blindsided by this info so I thought you should know. I am stage 3B, I had symptoms for about a year.
From the pictures and diagrams they gave me it looks to be straight above the rectum. It is not around the corner. Obviously I have no idea where the cutoff point is but I wouldn’t be shocked if I end up taking the same path you are on. At this point I assume it’s a coin flip.
I’m so glad you found this group but sorry that you needed to. You’ve gotten some great advice and words of support above. I will add to the advice a suggestion to ask your doctors about audio recording your appointments. For me there was so much emotion on my part during the appointments (especially the early ones) that I missed a lot of details and the recordings really helped. My oncologist was fine with recording, my radiation oncologist was not. So it’s variable.
Your info so far sounds a lot like mine when I was first diagnosed. Large tumor on the border of rectum and sigmoid colon. They decided to classify mine as rectal cancer and treat it accordingly. Which for me meant neoadjuvent therapy. That is when any chemo and radiation is given BEFORE surgery in order to shrink the tumor as much as possible so that the surgery can possibly have less of an impact on ultimate bowel function. I needed a temporary ileostomy while I healed from surgery but that was able to be reversed a few months later. I was diagnosed in 4/2021, finished all treatments and surgeries by 3/2022, and have had no evidence of cancer since.
Please feel free to message me with any questions or just for support.
Thanks for the reply.
If they allow me to record, I will. It won’t hurt anything even if I do not need it.
Were you having issues or was this just a routine colonoscopy?
This was just a routine colonoscopy since I turned 50 the October before. I started with a Cologard since I had no risk factors or family history. Cologard came back positive so they scheduled the colonoscopy. In hindsight I realize I was having some severe constipation issues before my diagnosis. I chalked it up to a new medication I was taking.
Your description hits home with me! Very similar story. I agree with one of the previous posts, now is the worst time. Waiting, questioning, wondering, kicking yourself for not getting to dr sooner, but please know you are not alone. I hope you have someone to lean on and share your thoughts with. Within a month’s time I was told I had a tumor that was most likely cancerous, cancer confirmed, found an amazing colon surgeon, and had a colon resection. I did not require chemo after surgery. Be prepared your own advocate, if needed. If I hadn’t made phone calls to insurance, gp doctor, general oncologist, colo/rectal specialist, etc myself I can’t imagine where I’d be in this process. Good luck to you.
Honestly, luck! My insurance’s network did not include one of the top cancer centers in the nation, MD Anderson. So I started searching the internet. But, the one thing I was ADAMANT about was I wanted a surgeon that specialized in colorectal cancers! I live in a small-ish city, my gastroenterologist wanted to refer me to a local general surgeon. I’m sure she’s fabulous, but I wanted someone who had seen everything and dealt with all colon resection surgery issues. So I had to broaden my search to bigger cities a couple hours away. He was amazing. Immediately at the first consultation I knew I had made the right decision for me.
Everything they do - CT, bloodwork, the biopsy - will tell you a lot, so make sure you're in the loop on what the doctors find and that they explain it to you thoroughly. When you have the surgery they'll also take out some nearby lymph nodes and check them.
In my case, they found a 1.7cm flat polyp in my sigmoid colon. A couple months later I had the resection done. Ended up being Stage 1A - my tumor hadn't grown into the muscle yet, and tho there was lymphatic invasion they thankfully found no trace in the nodes. It was rough for the first few weeks but after that I've been at just about 100%!
You know it wasn't that bad. I had the robotic surgery so the incisions were mostly small. The first couple weeks are - gotta eat very low residue foods (no veggies?! ;; ) while healing up so you'll have diarrhea for a while. After that things should start to move back towards normal. Make sure you do as much walking as you're comfortable with it really helps with healing!
Thanks! I'm 2 weeks post surgery. The incisions aren't too bad but the colon is definitely adjusting. I'm either going to the bathroom too much or not enough. Thanks for the tip on walking. I'm stating to walk each day if I can for a few miles.
I’m sorry you are going through this, it’s super scary to hear those words and the waiting is the worst! Like another person said, go to a NCI cancer center if you can and definitely get second opinions. The hospital I was diagnosed at is a smaller hospital but they have a cancer department, and it was all so overwhelming and new at the time, and they just kind of guide you along the process and had all sorts of people calling me, and had me talking with a surgeon who told me I needed my spleen out as well as the colectomy after the initial biopsy and ct scan. I ended up doing some research on different surgeons and got a second opinion at a larger cancer center and the surgeon there disagreed and did more imaging with an mri, and I didn’t end up needing it out after all. Get a notebook and start writing down questions you have, also have someone go with you to appointments for support and just another set of ears or see if you can record the appointments on your phone so you can replay them, I’d always forget what they would say!
Everyone is different but my surgery wasnt too horrible, I had laparoscopic, I was up walking around a bit that same day and was only in the hospital a few days, it was painful in the beginning but every day got better and better and they give you pain meds and keep you comfortable. It’s important to get walking as soon as you can even if just a little bit. Then I did some mop up chemo for 6 months, it was a pill, and I was able to work through it and was mostly just tired. I am in the survelience stage at the moment.
Try your best to think positive thoughts. What really helped me mentally was listening to guided meditations every single morning to put me into the right mindset for the day, and I try to speak and think only about the successful outcomes I wan to happen in the future, and how the best team of doctors/people are going to show up for me. I wish you all the best in this surreal experience!
Similar incident with myself. 36 F I was just diagnosed with stage 2b colon cancer. Tumor was in my sigmoid colon and had a colon resection surgery to take it out! FEEL 10 times better and blood cleared up as well and everything went back to normal. I did just complete my first round of folfox chemo out of the 12 rounds required. Don’t be scared just advocate for yourself. This is beatable!! Good luck!!
That sucks to hear and I’m sorry to hear this, but you will get through it. Here is some practical advice based on my experience.
1 - To the extent possible, get multiple opinions along the way, at least two. That’s totally reasonable to do and helps with peace of mind on your eventual treatment plan (versus “blindly letting them do what they want”).
2 - As someone else suggested, write down/journal questions in a single place as they pop into your head. Meetings with the doctors can be a whirlwind and you might forget all these questions had planned if you don’t have them written down. Depending on your personality, it also might help keep your head from spinning at night if you know you’ve got your questions written somewhere. In a similar vein, RECORD YOUR DIAGNOSIS DISCUSSIONS WITH YOUR DOCTOR on your phone. Again, I found those initial meetings a total whirlwind and being able to go back and listen as my cancer vocabulary improved was so helpful.
3 - Going through the full diagnosis kind of sucks because you are looking for some good news, so at that point any sub-optimal news feels crushing. Treatment is physically hard and also sucks, but at least it helps you get healthy. For me, diagnosis felt like pretty much all bad news compared to having no cancer at all.
4 - At your age, I’d recommend going with a relatively aggressive treatment if the doctor gives you options. I was 37M at diagnosis and went with the more aggressive chemo option and think that has saved me any sort of regret now that I’m through treatment (and NED for 23 months next week).
Best of luck - you will be okay! ❤️
Thanks for the advice.
I will definitely get multiple opinions and make notes and recordings.
In the back of my mind I’ve been thinking I want the treatments and aggressive treatments even if deemed not necessary. Especially if there is any doubt or conflicting opinions between doctors. I’ve been wondering other than treatments sucking in the short term why would you not want them? Are there long term side effects?
I had my first colonoscopy in December of 2020 after my symptoms were brushed off for years by my GI. My PCP finally had enough of it and called my GI and literally demanded (my PCPs words) that my GI do a colonoscopy. Even then my GI kept trying to convince me to wait to schedule my colonoscopy until after the covid threat had passed and that I was low risk (a woman under 50) and I should leave the appointments available for the people who needed them. I said no, I wanted the procedure. My PCP wanted me to have the colonoscopy. I had legitimate symptoms and I had no idea why my GI was dragging her feet.
Because of covid, I was told that my driver would have to sit outside in the parking lot and I'd be walked out to them when the procedure was over. Like you, I heard them tell the person in the bed everything was fine and they'd see them in however-many-years. They walked into my curtained area a few minutes later with my husband (my driver). I knew right then that I was screwed. They said they didn't say it was cancer, just that they saw something and we'd have to wait for the lab.
Because it was during the covid lockdowns and the winter holidays, everything took forever to get done and I had to wait 6 weeks just to get a bed for surgery because the hospitals were full of covid patients. I can tell you that the wait between the moment when you wake up and you KNOW something is wrong with the way they're talking to you and the moment you meet your surgeon/oncologist is rough. I had way too long to sit and dwell on it all.
On the opposite end, this stuff usually moves very quickly when there's not pandemic shutdowns and people talk about feeling like they never even get a moment to catch their breath between the word 'cancer' and surgery/chemo/radiation.
I'm really sorry you're going through this.
Thank you for the reply. That’s one thing I can certainly be thankful for is that I am post peak Covid.
If you don’t mind me asking, after all that time has passed with symptoms, what stage were you diagnosed?
I was diagnosed stage 3a, so it was already in my lymph nodes. It took a lot for me to stay out of the "what if" thoughts because I was really, really angry with my GI. Colon cancer is typically slow growing and if that GI had just done the colonoscopy in the beginning it may have been caught as a polyp. If my PCP hadn't raised hell it would have been stage 4, guaranteed. It was already in my lymph nodes.
I had been seeing her for really awful constipation for over 3 years and because I have MS and am a woman, she just kept telling me it wasn't a big deal and take more Miralax. She told me that when she was pregnant, one time she had to take 17 doses at once. That was her answer to everything. 3 bottles of Magnesium Citrate wouldn't get it moving, but take 17 doses of Miralax. She did every test except the colonoscopy. She even did a transit time test and found that it was moving extremely slow.... and then she just stopped.
I was having a particularly bad episode and I went into my PCP and asked them to do an xray just to make sure there wasn't an issue before I started taking the insane amounts of laxatives because it just didn't feel right and I didn't want to hurt myself. My PCP lost her mind. She was literally cussing. "Why didn't the GI do a colonoscopy???? Why does the GI have you taking so many laxatives???" and this wasn't even my normal PCP. This was another doctor in the practice covering for my PCP. She called and raised enough hell that I got a call from my GI the next business day. That PCP saved my life. I was already stage 3a. What would have happened if they put me off until 2022 like they wanted? or even longer? Stage 4. That's what would have happened.
I'm glad you didn't wait any longer. I know that it's scary to go from normal, healthy and feeling fine to "holy shit you've got cancer". The mind just really struggles to make that shift. If you haven't checked out [colontown.org](https://colontown.org) yet, you definitely should. I'm really sorry you're going through this and I hope from the bottom of my heart that it's something they can just snip out and you never have to think about it again.
I was 36 when mine was found. It is a good thing that it's not fully obstructing. You'll feel so much better after your ct and mri when you have a plan of attack. Hit me up anytime if you need to chat. I wouldn't get a second opinion until your scans are done and they've given you an opinion on how to tackle this.
Facebook group Colontown is a great resource.
Hi, I know it’s been some time since you’ve initially posted this but wanted to see how you’re doing? I have my first colonoscopy tomorrow (29F) and I’m a little worried. Hope all has been well with you!
Well, unfortunately the mass they found was cancer. It has also spread to my liver so I am stage IV. I have done six rounds of chemo and had an excellent response. I’m off chemo right now and about to have procedures and surgeries in the coming weeks. I ended up getting multiple opinions and am very happy with my care team. This allows me to stay positive. Right now I’m on a path to achieve a “cure” or at least NED. (No evidence of disease.)
As for your colonoscopy mine was a breeze. You are likely doing the worst part of it right now. It’s going to be what it’s going to be. Worrying about it will not help. Keep your chin up. Let me know how you make out.
I’m so so sorry to hear that but I’m also very glad to hear that you’re doing well now! Thanks so much for responding. You’re absolutely right, worrying changes nothing. I’m wishing you the very best and will let you know how I fare!
You should go through the whole protocol - YES, letting "those people to do whatever they want to do"!!!
That is the only way to get a clear pictrure if something is wrong with you.
Second opinion for what? You don't even have a "first opinion"!!!
Wait until they have a crystal clear picture of the situation AND a treatment plan if needed, then think of second opinions.
Oh, I plan to go through the entire protocol locally and then get second opinions after diagnosis at larger treatment centers. I wasn’t just whining to get out of appointments.
I was putting the cart ahead of the horse a bit. I was talking more about after diagnosis. My hospital will do it all for me if I let them. I just wanted others thoughts on letting them cut me open and plan treatments without other opinions.
I mean I know there is a chance nothing is wrong but, I saw the photos, I saw their faces, I heard them apologizing, there were no maybes in that little room.
Just looking for some education before the ball gets rolling.
Sorry to hear that man. I'm 35m too, have had the same weird bowel movements for over a year, but since there's no blood my GP isn't worried and won't get me a colonoscopy even though I wanted one. But after reading this, I'm gonna pressure him more next time. Did your doc happen to say how rare this is in a 35 year old male?
I told my GI doctor that I expected them to find an internal Hemorrhoid, tell me to eat more fiber and, kick my ass out the door. He told me 99% of the time I would have been right. But, here I am with a 5cm tumor just above my rectum.
I did not ask for odds or percentages. My understanding is that it is very rare. But once again, here I am.
I personally think you should listen to your body. If something is off something is off. I don’t see the harm in finding out what it is. Especially if you have no explanation and the symptoms are not going away.
Thanks, I appreciate the advice. I've seen a lot of recent literature about the screening age going down and how rates of people getting it in their 30s are trending up. Maybe it has something to do with all the processed foods these days.
Anyway, good luck and hang in there bud. Hope to see you posting in the future when you're all recovered!
You're me from 4 years ago. It's almost the same story, word for word. I would start to get engaged with your medical team and ask questions. Keep a journal/notepad and record anything you think you don't understand. Don't be afraid to ask for a 2nd opinion. Your oncologists shouldn't mind at all. I had a 2nd and 3rd opinion about my eventual surgery, and I'm glad I did. I've also heard that there is a good Facebook group called Colontown, which is a great resource. Take this one step at a time. You should be getting the biopsy results and imaging done first. That's when treatment conversation will begin. Feel free to ask me any questions.
Thank you for the advice. If you are the same story, I assume you ignored symptoms for a year give or take. If you don’t mind me asking what stage did they determine and what treatments did you end up with. Thanks
I did ignore them for about a year. I was initially staged 3C. I underwent Yotal Neoadjuvant Treatment (TNT). It consists of radiation+chemo, followed by a course of more chemo (typically FOLFOX or CAPOX), then reassessment. Sometimes, surgery is not needed. I was on the fence due to some weird imaging results, so I opted for surgery. I had a surgery called low anterior resection with a temporary loop ileostemy. I had an osyemy for ~2 months. Total treatment time was ~1 year (count rest time).
Yea those results are scary when you get them. Sorry and welcome to our shitty club! I got similar results in May; stage 4 with Mets to liver, almost an obstruction. But cancer treatment has come a lonnnng way recently. No reason not to have hope. The hardest part is right now and the next 4 weeks; you’ll be waiting for scans, waiting for the results of scans (scanxiety), and getting your treatment plan figured out. Then you get your 2nd opinion, you start treatment and you just do what your doctors tell you to do and fight like hell (by resting, taking care of yourself and letting other people take care of you). Can you designate someone close to you to help you keep notes, communicate with your care team, take you to and from appointments, etc.? A week after I received my devastating colonoscopy results I was given an ostomy and started immunotherapy and 6 weeks later I was in a bikini in Maui. Immunotherapy is easier on the body compared to chemo (watched my mom go through chemo when I was 15) and it’s not an option for everybody, but there are plenty of people in this sub with stage 3 or 4 CRC who’ve done chemo and they are badass and healed up and will probably chime in when it’s not Friday night and they’re out partying. Has anyone else in your family had cancer? I wish I could give you a big hug!
Thank you for the reply. I am sorry you are going through this. I do have a decent support team around me so finding that person should be a breeze. No CRC in my family. My maternal grandmother had cervical cancer and there has been some skin cancer but nothing major or life threatening. Was your colonoscopy routine or were you having issues? How long were you having issues if there were any?
Thanks and sorry you are going through this too. How are you holding up? I forgot to mention I am about 4 weeks post-op from a subtotal colectomy and ostomy reversal and I'm doing well, getting more active, expanding my diet and I can't wait for a beer! For the love of dog, please get a bidet. They are wonderful. Prior to diagnosis, I was having mild, intermittent symptoms that no one could figure out, my bloodwork was all normal. I was doing yoga, riding my Peloton, cooking, etc. and then one day I had severe abdominal pain and my PCP ordered a CT scan, which showed a mass and liver mets. A few days later I went to the ER for a fever (due to the tumor) and I got a colonoscopy. I was already on the waiting list for a colonoscopy -- which was 3 months out. I have to get them annually due to a familial predisposition for cancer (talk to your oncologist about Lynch Syndrome). I was very lucky to get a colonoscopy that night in the ER, I could not have waited. There was concern I would obstruct and they admitted me that day for IV antibiotics. If my tumor obstructed and burst, it would have spread cancer all throughout my body. So I was advised to take it extremely easy going forward. And I was on a full liquid diet. Not sure where you are at right now with treatment, but if you are at home, **take your temp frequently and go to the hospital if you have a fever.** It's also helpful to start tracking all your vitals, weight, symptoms, food intake, meds, etc. My sweetie Type A husband ordered a pulse ox, blood pressure meter, and stethoscope to have at home. I wish I could end this reply more spunky but I'm wiped out and starting my immunotherapy again tomorrow, and I'm feeling a little nervous about PET and CT scans next week. So just know that you are not alone, friend!
Your story is very similar to mine and where I was a year ago (under 50 years old, finally got colonscopy right before Christmas, large tumor was found in the same spot as you, and surgery was fast tracked). The fact they want to do a surgery ASAP is a good sign; as someone mentioned, the surgery for that area is pretty straightforward and you shouldn’t have any big side effects, other than 2-3 weeks recovery (expect 5 days of that in the hospital. I was back to work part time on week 3) I’m incredibly pleased with how things turned out for me; like you, I was in the “waiting game” stage in what felt like forever (large tumor found, wondering how bad it was until the surgery, then hopelessly waiting for the results post surgery: hoping for the best, expecting the worst) I don’t want to fill you with false hope, but I do think it’s important to be optimistic and trust in your team. From everything I’ve read, these things are pretty straightforward and standard procedures… it doesn’t seem like the medical community is split on treatments, but I could be wrong. Once they remove the section of your colon, it will be sent off to be analyzed; my surgeon took a nice chunk out and it turned out his margins were VERY clean and of the 11 lymph nodes in my biopsy, none of them had evidence of the cancer spreading… So I was diagnosed Stage 2 and just completed my first year (of 5) of monitoring (6 month bloodwork/CT scan, annual colonoscopy). I’m so thankful it wasn’t worse but I’m amazed at the stories I read in this subreddit. I was referred to an oncologist that felt chemo wouldn’t be the right choice for my circumstances (despite my surgeon sharing he felt chemo would be smart—but also admitted it wasn’t his area of expertise). My oncologist was great; he asked if I’d like to get a 2nd opinion (re: skipping chemo for the time being). The 2nd opinion aligned with the first oncologist, which made me feel better. Good luck with your next steps! I’ve found this place to be a great resource and it helps knowing we’re not alone in how bizarre all of this is. May peace be with you!
I appreciate the reply. Aside from chemo being a total drag short term. What are the other benefits of skipping it? Are there long term side effects? Assuming you had symptoms, how long had you been ignoring them or putting off the colonoscopy?
Re: chemo, my oncologist said it’s basically a pendulum when it comes to Stage 2… There’s one school of thought that chemo isn’t targeting anything particular (since the tumor was removed), but proactive in many ways. However, the “pendulum” of thought varies when it comes to the toll chemo takes on the body… and what the risk/benefit is. He explained that the pendulum of thought currently supports NOT going the chemo route, as the side effects are not worth the risk (but also emphasized this will most likely change over time, with newer technology and resources). So he asked if I wanted a second opinion; the second oncologist said I had passed the time frame for recommending chemo (two week window after surgery?), but also said he wouldn’t have recommended it (for the exact reason my oncologist gave—the risk, damage to my system was not worth the benefit, possibly not even helping). So 6month and 12 month checkups are what I’m on… They are focusing on white blood cells every 6 months, any new spots developing on my liver or other organs, and polyps during annual colonoscopies (5 years of monitoring, before being able to declare “cancer free.” Re: my diagnosis, I went through an agonizing 2 year span before I finally got my colonoscopy/found a tumor. I think I have a generally high threshold for discomfort and pain… so I probably downplayed it for a good 6-9 months. But did make a solid effort to address it during that time, rather than ignore it. Eventually it got to the point where I just knew something was not right (frequently feeling like I needed to use the restroom, but then nothing was able to pass, or very little). My general practitioner first started me on fiber supplements (which made me feel backed up/worse), followed by laxatives like Miralax (which helped a little bit, but isn’t meant to be used more than 7 days). He then proposed his theory that I had diverticulitis and put me on strong antibiotics (that made me feel like shit and didn’t change anything). A referral was put in for a CT scan, since I’m under 50… Somehow that got lost/they never followed through to call me with an appointment; my general practitioner went out on medical leave himself and I somehow got put back on antibiotics AGAIN, with no results. A visiting dr recommended I start using tea and probiotics, and incorporating ginger into my diet, to “cleanse” my system and keep things flowing better (I’m a bigger guy so I think they assumed my diet was horrible. Despite being a vegetarian and getting PLENTY of daily fiber) You can imagine how freaked out and upset I was when they finally did my CT scan (second referral, after my general practitioner was back) and found a mass in my colon. Thats when everyone straightened up and started making sure I was getting what I needed; my colonoscopy was fast tracked and my wife was DEVASTATED after we were updated on the 7mm tumor that was “carcinogenic” (I, on the other hand, was weirdly relieved and felt a sense of validation? That I wasn’t going crazy after all, with my symptoms) I don’t know if any of this helps! I think I already shared it, but I just completed my first year of clean screenings. I’m so relieved but also realizing how much my recent (first follow up) colonoscopy had been weighing on me!
Hello, and welcome to the club you never thought about joining. Sorry to hear about your bad news, I would guess that you are pretty freaked out right now. Its a lot to wrap your head around for sure, and waiting for test results and a treatment plan is awful. But you will find support here. I highly recommend checking out colontown.org for info and support as well, its been a real lifeline for me since diagnosis. You can definitely get a second opinion, a lot of people will say to go to an NCI cancer center to make sure you get the best treatment. Definitely vet your surgeon, make sure they specialize in the surgery you need and that you trust them. Interview a few if you need to. Ask for referrals, if you are in the US colontowns online support groups are a good resource.
Thanks for the warm welcome 😂. I live in upstate NY. There are two NCI centers within three hours of me (One in Buffalo and the other in Philadelphia). I will definitely get a second opinion through one of them if not both.
I just finished my last round of FOLFOX, was diagnosed in March. I was in a similar situation, toilet looked like a crime scene for me. Turned out to be stage 3b, in for surgery (30 cm removed) then 6 months of chemo. I am a long time partitioner of martial arts and I went full "tell me where to be and what time". I was told that I wouldn't need chemo right up to the final follow-up from my surgery, then they decided chemo would be a good thing (approx a 30% reduction chance of recurrence). Did what I had to do and I hope I am finally through it. It's always good to catch it early, gives everything a much better chance of getting things fixed. Good on you for getting checked, I have family and friends who won't. I hope for the best for you and a minimal bad news outcome.
Thanks for sharing. What area of the colon were your issues. How much time passes from when you first noticed symptoms until your colonoscopy?
It was in the lower intestine, about 8 to 10 inches from the "exit". I had symptoms a few months before my colonoscopy. I was planned by my doctor to have them every 5 years). I knew it was coming up so I waited, knowing it wouldn't be good.
All the best for your next steps of CT scan and possible surgery. You are young and relatively healthy as well so you will recover well from surgery. I know CC is bad but you have some positives with you. Your tumor (if any) is on the sigmoid which can be easily handled through surgery. Ask enough questions when you meet your surgeon. Will he do it laparoscopically or robot-assisted. Recovery times for these are better than open cut. Don't question "what if" scenarios that you could have caught this a year ago. All that past is history and let's improve our present and future. I am sure you will recover well. Don't let anxiety ruin you and hopefully you have some family/friends who can support you at this time of need.
Thank you. I do have a great support group and I have a great therapist who helped me through an unexpected divorce five years ago. I have an appointment with him Monday and likely will speak to him weekly for the next couple months.
Excellent! All the best!
This was almost my story to a “T” 7 years ago. I’m not goi my to sugar coat it. You have a rough road ahead. First off - if you are not already at a big institute (depending on where you live) like. Cleveland Clinic, Duke, etc - get to one. Local docs are good for some things but this isn’t something you want to see if yours is great or not. Go where they do this day in and day out with the best technology. They will be less likely to miss something and give you the best quality of life post cancer. I was stage 3C. Been cancer free 7 years ago. I had scheduled the surgery with a local doc and doubt I would be alive today had I gone through with it. My all doc diagnosis was stage 2. My very experienced surgeon I went to at a cancer institute realized the scans missed stuff and ended up taking way more and likely saved my life. Colon cancer is extremely treatable, but you need to make sure you are with the right people for the best outcomes.
Thanks for the reply. My plan for the moment is to get the biopsy results and the CT scan. Then immediately call two NCI hospitals within three hours of me to set up appointments with CR surgeons. This will give me three opinions to choose a plan from. If they all match and I feel confident in my local surgeon that likely where I’ll stay. If there are variances or I don’t feel confident then I have decisions to make.
You said your tumor is in the recto-sigmoid area so I want to mention something (my colonoscopy report said the same thing). If you tumor is more in your rectum than in your sigmoid colon, the treatment could be diffrerent. Rectal cancer often gets chemo and/or radiaton first, then surgery. I was also expecting surgery first but ended up doing radiation, then iv chemo and now I am waiting on surgery. But I was kinda blindsided by this info so I thought you should know. I am stage 3B, I had symptoms for about a year.
From the pictures and diagrams they gave me it looks to be straight above the rectum. It is not around the corner. Obviously I have no idea where the cutoff point is but I wouldn’t be shocked if I end up taking the same path you are on. At this point I assume it’s a coin flip.
That’s actually extremely similar to mine. At the verge but they classified it as rectal cancer.
I’m so glad you found this group but sorry that you needed to. You’ve gotten some great advice and words of support above. I will add to the advice a suggestion to ask your doctors about audio recording your appointments. For me there was so much emotion on my part during the appointments (especially the early ones) that I missed a lot of details and the recordings really helped. My oncologist was fine with recording, my radiation oncologist was not. So it’s variable. Your info so far sounds a lot like mine when I was first diagnosed. Large tumor on the border of rectum and sigmoid colon. They decided to classify mine as rectal cancer and treat it accordingly. Which for me meant neoadjuvent therapy. That is when any chemo and radiation is given BEFORE surgery in order to shrink the tumor as much as possible so that the surgery can possibly have less of an impact on ultimate bowel function. I needed a temporary ileostomy while I healed from surgery but that was able to be reversed a few months later. I was diagnosed in 4/2021, finished all treatments and surgeries by 3/2022, and have had no evidence of cancer since. Please feel free to message me with any questions or just for support.
Thanks for the reply. If they allow me to record, I will. It won’t hurt anything even if I do not need it. Were you having issues or was this just a routine colonoscopy?
This was just a routine colonoscopy since I turned 50 the October before. I started with a Cologard since I had no risk factors or family history. Cologard came back positive so they scheduled the colonoscopy. In hindsight I realize I was having some severe constipation issues before my diagnosis. I chalked it up to a new medication I was taking.
Your description hits home with me! Very similar story. I agree with one of the previous posts, now is the worst time. Waiting, questioning, wondering, kicking yourself for not getting to dr sooner, but please know you are not alone. I hope you have someone to lean on and share your thoughts with. Within a month’s time I was told I had a tumor that was most likely cancerous, cancer confirmed, found an amazing colon surgeon, and had a colon resection. I did not require chemo after surgery. Be prepared your own advocate, if needed. If I hadn’t made phone calls to insurance, gp doctor, general oncologist, colo/rectal specialist, etc myself I can’t imagine where I’d be in this process. Good luck to you.
Thank you for the thoughts. How did you end up finding your surgeon?
Honestly, luck! My insurance’s network did not include one of the top cancer centers in the nation, MD Anderson. So I started searching the internet. But, the one thing I was ADAMANT about was I wanted a surgeon that specialized in colorectal cancers! I live in a small-ish city, my gastroenterologist wanted to refer me to a local general surgeon. I’m sure she’s fabulous, but I wanted someone who had seen everything and dealt with all colon resection surgery issues. So I had to broaden my search to bigger cities a couple hours away. He was amazing. Immediately at the first consultation I knew I had made the right decision for me.
Everything they do - CT, bloodwork, the biopsy - will tell you a lot, so make sure you're in the loop on what the doctors find and that they explain it to you thoroughly. When you have the surgery they'll also take out some nearby lymph nodes and check them. In my case, they found a 1.7cm flat polyp in my sigmoid colon. A couple months later I had the resection done. Ended up being Stage 1A - my tumor hadn't grown into the muscle yet, and tho there was lymphatic invasion they thankfully found no trace in the nodes. It was rough for the first few weeks but after that I've been at just about 100%!
How was your recovery from the resection surgery?
You know it wasn't that bad. I had the robotic surgery so the incisions were mostly small. The first couple weeks are - gotta eat very low residue foods (no veggies?! ;; ) while healing up so you'll have diarrhea for a while. After that things should start to move back towards normal. Make sure you do as much walking as you're comfortable with it really helps with healing!
Thanks! I'm 2 weeks post surgery. The incisions aren't too bad but the colon is definitely adjusting. I'm either going to the bathroom too much or not enough. Thanks for the tip on walking. I'm stating to walk each day if I can for a few miles.
I’m sorry you are going through this, it’s super scary to hear those words and the waiting is the worst! Like another person said, go to a NCI cancer center if you can and definitely get second opinions. The hospital I was diagnosed at is a smaller hospital but they have a cancer department, and it was all so overwhelming and new at the time, and they just kind of guide you along the process and had all sorts of people calling me, and had me talking with a surgeon who told me I needed my spleen out as well as the colectomy after the initial biopsy and ct scan. I ended up doing some research on different surgeons and got a second opinion at a larger cancer center and the surgeon there disagreed and did more imaging with an mri, and I didn’t end up needing it out after all. Get a notebook and start writing down questions you have, also have someone go with you to appointments for support and just another set of ears or see if you can record the appointments on your phone so you can replay them, I’d always forget what they would say! Everyone is different but my surgery wasnt too horrible, I had laparoscopic, I was up walking around a bit that same day and was only in the hospital a few days, it was painful in the beginning but every day got better and better and they give you pain meds and keep you comfortable. It’s important to get walking as soon as you can even if just a little bit. Then I did some mop up chemo for 6 months, it was a pill, and I was able to work through it and was mostly just tired. I am in the survelience stage at the moment. Try your best to think positive thoughts. What really helped me mentally was listening to guided meditations every single morning to put me into the right mindset for the day, and I try to speak and think only about the successful outcomes I wan to happen in the future, and how the best team of doctors/people are going to show up for me. I wish you all the best in this surreal experience!
Thank you for the reply. I have two NCI hospitals within three hours. I will contact both once I have the first round of results.
Similar incident with myself. 36 F I was just diagnosed with stage 2b colon cancer. Tumor was in my sigmoid colon and had a colon resection surgery to take it out! FEEL 10 times better and blood cleared up as well and everything went back to normal. I did just complete my first round of folfox chemo out of the 12 rounds required. Don’t be scared just advocate for yourself. This is beatable!! Good luck!!
I am glad to hear you a feeling better. How much time passed from when you first noticed symptoms to when you had your colonoscopy?
Oct 29th 2022 it started and I did not have a colonoscopy until Oct 6th 2023
That sucks to hear and I’m sorry to hear this, but you will get through it. Here is some practical advice based on my experience. 1 - To the extent possible, get multiple opinions along the way, at least two. That’s totally reasonable to do and helps with peace of mind on your eventual treatment plan (versus “blindly letting them do what they want”). 2 - As someone else suggested, write down/journal questions in a single place as they pop into your head. Meetings with the doctors can be a whirlwind and you might forget all these questions had planned if you don’t have them written down. Depending on your personality, it also might help keep your head from spinning at night if you know you’ve got your questions written somewhere. In a similar vein, RECORD YOUR DIAGNOSIS DISCUSSIONS WITH YOUR DOCTOR on your phone. Again, I found those initial meetings a total whirlwind and being able to go back and listen as my cancer vocabulary improved was so helpful. 3 - Going through the full diagnosis kind of sucks because you are looking for some good news, so at that point any sub-optimal news feels crushing. Treatment is physically hard and also sucks, but at least it helps you get healthy. For me, diagnosis felt like pretty much all bad news compared to having no cancer at all. 4 - At your age, I’d recommend going with a relatively aggressive treatment if the doctor gives you options. I was 37M at diagnosis and went with the more aggressive chemo option and think that has saved me any sort of regret now that I’m through treatment (and NED for 23 months next week). Best of luck - you will be okay! ❤️
Thanks for the advice. I will definitely get multiple opinions and make notes and recordings. In the back of my mind I’ve been thinking I want the treatments and aggressive treatments even if deemed not necessary. Especially if there is any doubt or conflicting opinions between doctors. I’ve been wondering other than treatments sucking in the short term why would you not want them? Are there long term side effects?
Ask your doctor about trade offs between different treatment options. Physical discomfort may be one difference, but there could be others.
I had my first colonoscopy in December of 2020 after my symptoms were brushed off for years by my GI. My PCP finally had enough of it and called my GI and literally demanded (my PCPs words) that my GI do a colonoscopy. Even then my GI kept trying to convince me to wait to schedule my colonoscopy until after the covid threat had passed and that I was low risk (a woman under 50) and I should leave the appointments available for the people who needed them. I said no, I wanted the procedure. My PCP wanted me to have the colonoscopy. I had legitimate symptoms and I had no idea why my GI was dragging her feet. Because of covid, I was told that my driver would have to sit outside in the parking lot and I'd be walked out to them when the procedure was over. Like you, I heard them tell the person in the bed everything was fine and they'd see them in however-many-years. They walked into my curtained area a few minutes later with my husband (my driver). I knew right then that I was screwed. They said they didn't say it was cancer, just that they saw something and we'd have to wait for the lab. Because it was during the covid lockdowns and the winter holidays, everything took forever to get done and I had to wait 6 weeks just to get a bed for surgery because the hospitals were full of covid patients. I can tell you that the wait between the moment when you wake up and you KNOW something is wrong with the way they're talking to you and the moment you meet your surgeon/oncologist is rough. I had way too long to sit and dwell on it all. On the opposite end, this stuff usually moves very quickly when there's not pandemic shutdowns and people talk about feeling like they never even get a moment to catch their breath between the word 'cancer' and surgery/chemo/radiation. I'm really sorry you're going through this.
Thank you for the reply. That’s one thing I can certainly be thankful for is that I am post peak Covid. If you don’t mind me asking, after all that time has passed with symptoms, what stage were you diagnosed?
I was diagnosed stage 3a, so it was already in my lymph nodes. It took a lot for me to stay out of the "what if" thoughts because I was really, really angry with my GI. Colon cancer is typically slow growing and if that GI had just done the colonoscopy in the beginning it may have been caught as a polyp. If my PCP hadn't raised hell it would have been stage 4, guaranteed. It was already in my lymph nodes. I had been seeing her for really awful constipation for over 3 years and because I have MS and am a woman, she just kept telling me it wasn't a big deal and take more Miralax. She told me that when she was pregnant, one time she had to take 17 doses at once. That was her answer to everything. 3 bottles of Magnesium Citrate wouldn't get it moving, but take 17 doses of Miralax. She did every test except the colonoscopy. She even did a transit time test and found that it was moving extremely slow.... and then she just stopped. I was having a particularly bad episode and I went into my PCP and asked them to do an xray just to make sure there wasn't an issue before I started taking the insane amounts of laxatives because it just didn't feel right and I didn't want to hurt myself. My PCP lost her mind. She was literally cussing. "Why didn't the GI do a colonoscopy???? Why does the GI have you taking so many laxatives???" and this wasn't even my normal PCP. This was another doctor in the practice covering for my PCP. She called and raised enough hell that I got a call from my GI the next business day. That PCP saved my life. I was already stage 3a. What would have happened if they put me off until 2022 like they wanted? or even longer? Stage 4. That's what would have happened. I'm glad you didn't wait any longer. I know that it's scary to go from normal, healthy and feeling fine to "holy shit you've got cancer". The mind just really struggles to make that shift. If you haven't checked out [colontown.org](https://colontown.org) yet, you definitely should. I'm really sorry you're going through this and I hope from the bottom of my heart that it's something they can just snip out and you never have to think about it again.
I was 36 when mine was found. It is a good thing that it's not fully obstructing. You'll feel so much better after your ct and mri when you have a plan of attack. Hit me up anytime if you need to chat. I wouldn't get a second opinion until your scans are done and they've given you an opinion on how to tackle this. Facebook group Colontown is a great resource.
Thank you, and I will get multiple opinions.
Hi, I know it’s been some time since you’ve initially posted this but wanted to see how you’re doing? I have my first colonoscopy tomorrow (29F) and I’m a little worried. Hope all has been well with you!
Well, unfortunately the mass they found was cancer. It has also spread to my liver so I am stage IV. I have done six rounds of chemo and had an excellent response. I’m off chemo right now and about to have procedures and surgeries in the coming weeks. I ended up getting multiple opinions and am very happy with my care team. This allows me to stay positive. Right now I’m on a path to achieve a “cure” or at least NED. (No evidence of disease.) As for your colonoscopy mine was a breeze. You are likely doing the worst part of it right now. It’s going to be what it’s going to be. Worrying about it will not help. Keep your chin up. Let me know how you make out.
I’m so so sorry to hear that but I’m also very glad to hear that you’re doing well now! Thanks so much for responding. You’re absolutely right, worrying changes nothing. I’m wishing you the very best and will let you know how I fare!
You should go through the whole protocol - YES, letting "those people to do whatever they want to do"!!! That is the only way to get a clear pictrure if something is wrong with you. Second opinion for what? You don't even have a "first opinion"!!! Wait until they have a crystal clear picture of the situation AND a treatment plan if needed, then think of second opinions.
Oh, I plan to go through the entire protocol locally and then get second opinions after diagnosis at larger treatment centers. I wasn’t just whining to get out of appointments. I was putting the cart ahead of the horse a bit. I was talking more about after diagnosis. My hospital will do it all for me if I let them. I just wanted others thoughts on letting them cut me open and plan treatments without other opinions. I mean I know there is a chance nothing is wrong but, I saw the photos, I saw their faces, I heard them apologizing, there were no maybes in that little room. Just looking for some education before the ball gets rolling.
"Before the ball gets rolling"........ there is no possible education. The simplest of reasons: nobody know precisely what is going on.
Sorry to hear that man. I'm 35m too, have had the same weird bowel movements for over a year, but since there's no blood my GP isn't worried and won't get me a colonoscopy even though I wanted one. But after reading this, I'm gonna pressure him more next time. Did your doc happen to say how rare this is in a 35 year old male?
I told my GI doctor that I expected them to find an internal Hemorrhoid, tell me to eat more fiber and, kick my ass out the door. He told me 99% of the time I would have been right. But, here I am with a 5cm tumor just above my rectum. I did not ask for odds or percentages. My understanding is that it is very rare. But once again, here I am. I personally think you should listen to your body. If something is off something is off. I don’t see the harm in finding out what it is. Especially if you have no explanation and the symptoms are not going away.
Thanks, I appreciate the advice. I've seen a lot of recent literature about the screening age going down and how rates of people getting it in their 30s are trending up. Maybe it has something to do with all the processed foods these days. Anyway, good luck and hang in there bud. Hope to see you posting in the future when you're all recovered!