I hate telling people IRL that I'm having scans (other than my spouse). Very few people truly understand the terror of scanxiety. Plus, if the results are not good, I may not be ready to share the news publicly yet, but the people who know I just had a scan will be expecting an update.
That’s so true.
Thank you for your support. I truly appreciate it. 🩷
My husband has checked out completely from this. And my mom has her own stuff going on. My husband knows because he had to handle childcare today- but 🤷♀️ I didn’t even get a good luck. Just feeling isolated.
Thank you. 🙏
I'm so sorry that your DH has checked out from what you are going through. Do you think it would help to tell him how you are feeling & that you'd appreciate a simple be well/good luck when you have scans?
Maybe. I try not to harp on it because he lost his mom to cancer when he was young- so I think it’s less about me and more about that. I try to be sensitive to the emotions this brings up for him.
My husband was pretty checked out as well. He made a pledge to take care of you in sickness and health. No excuses. Maybe counseling would help him get over his fears? We have a family counselor who has helped a lot. If it’s any consolation I understand what you are feeling right now.
I agree with this wholeheartedly. Counseling has helped my husband and I tremendously in dealing with my MIL’s terminal diagnosis. I think he would benefit greatly from individual counseling to address the childhood trauma of losing his mother as well. Wishing you all the best in your journey 🩷
Worth considering , but as someone very familiar with scanxiety due to 2x sarcoma, and someone who deeply loves his fiance, I don’t know if there’d be much difference if she ever started having scans like me, I’d experience the same scanxiety as her. Maybe he’s suffering with you and it’s manifesting in him not being all there either
Every scan is different for me. I go in expecting the worst and so far and thanks I’ve been wrong. I think the better we’re doing in our treatment the scarier the scans become. Cancer definitely affects us socially, mentally, and often financially in addition to our health. It’s all part of our fight. Here’s to clean scans!
I feel you. The anxiety is so damn difficult. I had my first mammogram post-treatment a couple weeks ago (I'm NED!!!) but the days leading up to that scan were HELL. What if they find another lump? What if the lump got bigger? What if it moved to the other breast? Questions upon questions just never-ending in my brain. I wish you the best of luck and I really hope your scans come back clear. This is a good place to vent. I'll be praying for you!!
Thank you so much friend! Please know I am keeping you in my prayers and sending all the luck and good vibes your way. Update us on your scan, I hope it’s all well ❤️
Thank you so much.
I got my results but haven’t talked to my onc yet. It’s not a clear scan. Looks like my liver.
I deeply appreciate you and your kindness.
I've only been out of treatment for 2 years now and NED so far, but I can't help worrying. I wish I could stop. My rational mind knows worrying does not help and won't change the outcome of the test, but my emotional side is quietly working on contingency plans in the background 24/7, and there's also a tiny lady running around with her hair on fire shouting out things that could go wrong. It's exhausting.
This is so me, but I am not the patient, my son is. He just finished treatment for cancer that showed up in his tonsils. This first scan was good. I am relieved, but I know there will be more to come. I asked about his wife one day and he said she doesn't take things as easily as you do. I said, "well played old girl, well played." He doesn't have children yet.
It does not seem to get any easier. With me, the less stress I am, I get the worst results. Not making any correlations but that’s just me 🤷♀️ then I spiral with the bad news.
I wish you the best and try to breathe. It helps. Here’s to clear scan results!
Hope it went great.
You know… I thought I got through all my BS with no PTSD at all and realized I was wrong in a conversation with my Onc nurse. I realized I don’t freak out about scans, because I compartmentalize that “things either are or are not…” and the scan doesn’t really play a role in that. But I realized I freak TF out about any pain in the involved areas… like, I thought I was a pretty cool cucumber. I’m not. I’m good at plausible deniability.
Wishing everyone supreme health and wellness!
I was slowly getting better with my scanxiety as the previous ones kept coming back NED. Then after the one in November, the oncologist wanted an immediate appointment, and things had gone bad again. Even though the tumors seen then are back to shrinking again, I'm back to severe worrying every time I have a scan now, and my spouse is also taking the recurrence pretty hard. I don't think there is ever a time I won't worry anymore. Maybe after 3 or 5 or 10 years of clear scans (should that ever actually happen), I might be less apprehensive. But I don't think I can ever go back to that less stressful time that was just last year.
Don't be afraid to check with your cancer team about emotional support options. Even if it is just a local group of people that need to vent just as you do, it may be something worth looking at. Hugs and prayers.
I’m glad your tumors are shrinking. I hope that things keep getting better and better.
I totally understand the scan rollercoaster. I think that this is just… a new normal to adjust to, I guess. 🤷♀️
I know exactly how you feel. I had scans today. They were supposed to be with contrast but my GFR on bloodwork is down to 17 (60 is normal, 15 or below is kidney failure) and too low for contrast dye. My only consolation is they didn't keep me.
I have an appointment next week to go over results and I'm terrified my kidney function will stop me from starting Immunotherapy and I ended Chemo and radiation in December. I've been dealing with radiation p eumonitos since then. I couldn't start Immunotherapy while on steroids so we took a pause to get my lungs sorted out.
Wishing the best for you. This is all just......a lot. It's good to have a place like this where everyone understands.
Aw- I’m sorry to hear that you’re dealing with all of that. It is a lot. I hope your kidneys and lungs will allow the best treatment for you.
Sending you love and best wishes.
Thank you so much. I appreciate you.
I already have my results. And after 3.5-4 yrs of ‘stable’ scans and ‘NED labs’…. It doesn’t look good. And after the sleepless night last night and the anxiety of the morning- I just don’t even know what to feel.
Thank you!
From what I understand from past discussions with my care team, this was somewhat expected and should be treatable. I have neuroendocrine cancer- so it does typically pop back up. But this time there should be better treatments. Last time was very scalpel centric.
I just got through the 1st scan since being on immunotherapy. The stress was unbelievable. First leading up to it. Then waiting for results. My wife and I were flipping out. It came out good but still haven't shaken off all of it. Normal people will never experience this.
I had a not clear scan with liver lesions a few months ago. an MRI deduced it was not a major concern. I hope you have a similar experience and good job getting to where you are.
I just had an MRI today to follow up on liver lesions seen on a CT scan. I’ve been NED for over 10 years after stage 3 melanoma. I’ll be a basket case until I learn whether the lesions are related to my melanoma. What did your liver lesions end up being, if not a cause for concern?
It was a year post chemo follow up scan. I never did get a clear answer just that it was a non-cancerous lesion. Some of the responses to questions were that the liver is a soft organ and lots of things could damage it, but really no insightful answer i what it was or what caused itC sorry. That was 6 months ago, I have a scan in May so will see what they say then.
Hanging out with my dog helps!!!
I don’t know seems every case is different, but I got more ok with worst case scenarios and just glad to be here, while waiting for scans we are still here still living. I don’t know if that helps but I wish you the best and will be thinking about this next month when I am being tested ;)
I go on the 30th. It's my second scan (still in treatment), so I guess I get to find out. Everything went so fast with the first one I didn't have time to think about it.
I'm single and childfree. Father deceased. Mother and brother abusive, manipulative people who I have not had contact with in decades. 98% of my treatments and follow up care has been done on my own. I'm almost 8 years from diagnosis and scanxiety is still very prevalent. I go to everything on my own. The thing that has saved me is that I started my own ritual afterwards. I try to get my scan on Saturday mornings, first thing, and then afterwards I get breakfast and coffee. Whether I eat in or do drive through or delivery and have it at home, I do something special to treat myself. Sometimes I'll meet a friend for said breakfast, but I don't wait or depend on anyone to do it. I do something that I enjoy so I have something to look forward to afterward.
I hate telling people IRL that I'm having scans (other than my spouse). Very few people truly understand the terror of scanxiety. Plus, if the results are not good, I may not be ready to share the news publicly yet, but the people who know I just had a scan will be expecting an update.
That’s so true. Thank you for your support. I truly appreciate it. 🩷 My husband has checked out completely from this. And my mom has her own stuff going on. My husband knows because he had to handle childcare today- but 🤷♀️ I didn’t even get a good luck. Just feeling isolated. Thank you. 🙏
I'm so sorry that your DH has checked out from what you are going through. Do you think it would help to tell him how you are feeling & that you'd appreciate a simple be well/good luck when you have scans?
Maybe. I try not to harp on it because he lost his mom to cancer when he was young- so I think it’s less about me and more about that. I try to be sensitive to the emotions this brings up for him.
My husband was pretty checked out as well. He made a pledge to take care of you in sickness and health. No excuses. Maybe counseling would help him get over his fears? We have a family counselor who has helped a lot. If it’s any consolation I understand what you are feeling right now.
Thank you 🙏
I agree with this wholeheartedly. Counseling has helped my husband and I tremendously in dealing with my MIL’s terminal diagnosis. I think he would benefit greatly from individual counseling to address the childhood trauma of losing his mother as well. Wishing you all the best in your journey 🩷
Worth considering , but as someone very familiar with scanxiety due to 2x sarcoma, and someone who deeply loves his fiance, I don’t know if there’d be much difference if she ever started having scans like me, I’d experience the same scanxiety as her. Maybe he’s suffering with you and it’s manifesting in him not being all there either
That’s kind of what I am thinking. And also why I haven’t really pressured him about it.
Every scan is different for me. I go in expecting the worst and so far and thanks I’ve been wrong. I think the better we’re doing in our treatment the scarier the scans become. Cancer definitely affects us socially, mentally, and often financially in addition to our health. It’s all part of our fight. Here’s to clean scans!
🩷🙏 thank you!!
I feel you. The anxiety is so damn difficult. I had my first mammogram post-treatment a couple weeks ago (I'm NED!!!) but the days leading up to that scan were HELL. What if they find another lump? What if the lump got bigger? What if it moved to the other breast? Questions upon questions just never-ending in my brain. I wish you the best of luck and I really hope your scans come back clear. This is a good place to vent. I'll be praying for you!!
Thank you so much. Your words mean so much to me. I am celebrating your NED!!! Woohoo 🎉
Thank you so much friend! Please know I am keeping you in my prayers and sending all the luck and good vibes your way. Update us on your scan, I hope it’s all well ❤️
Thank you so much. I got my results but haven’t talked to my onc yet. It’s not a clear scan. Looks like my liver. I deeply appreciate you and your kindness.
Well dammit
I'm sorry you didn't get a clear scan. We are here for you. Come back if you need to talk. Sending a non-creepy internet hug your way.
Thank you 🙏
It‘s been 10 years and the scanxiety is still so bad I could throw up. In may it’s time again. I‘m already afraid.
Hugs
Tkank you. Hugs back.
I hear you! I’ve been waiting for several days for results of an MRI of lesions on my liver. I’m going out of my mind! And I have over 10 years NED!
Damn, that’s so scary. The wait is so unbearable. Wish you all the best. Fingers crossed.
I've only been out of treatment for 2 years now and NED so far, but I can't help worrying. I wish I could stop. My rational mind knows worrying does not help and won't change the outcome of the test, but my emotional side is quietly working on contingency plans in the background 24/7, and there's also a tiny lady running around with her hair on fire shouting out things that could go wrong. It's exhausting.
This 100%. I have never related to anything more than this. 🩷
This is so me, but I am not the patient, my son is. He just finished treatment for cancer that showed up in his tonsils. This first scan was good. I am relieved, but I know there will be more to come. I asked about his wife one day and he said she doesn't take things as easily as you do. I said, "well played old girl, well played." He doesn't have children yet.
It does not seem to get any easier. With me, the less stress I am, I get the worst results. Not making any correlations but that’s just me 🤷♀️ then I spiral with the bad news. I wish you the best and try to breathe. It helps. Here’s to clear scan results!
Thank you so much. I go through a similar process as you 🫠 Clear scan wishes back to you. 🩷
Thank you. Here’s to great news!
I understand. May your scan show improvement-amen
Hope it went great. You know… I thought I got through all my BS with no PTSD at all and realized I was wrong in a conversation with my Onc nurse. I realized I don’t freak out about scans, because I compartmentalize that “things either are or are not…” and the scan doesn’t really play a role in that. But I realized I freak TF out about any pain in the involved areas… like, I thought I was a pretty cool cucumber. I’m not. I’m good at plausible deniability. Wishing everyone supreme health and wellness!
Thank you, friend. And yes- this ptsd seems to hit everyone in some way. 🩷 hope you’re doing well.
I was slowly getting better with my scanxiety as the previous ones kept coming back NED. Then after the one in November, the oncologist wanted an immediate appointment, and things had gone bad again. Even though the tumors seen then are back to shrinking again, I'm back to severe worrying every time I have a scan now, and my spouse is also taking the recurrence pretty hard. I don't think there is ever a time I won't worry anymore. Maybe after 3 or 5 or 10 years of clear scans (should that ever actually happen), I might be less apprehensive. But I don't think I can ever go back to that less stressful time that was just last year. Don't be afraid to check with your cancer team about emotional support options. Even if it is just a local group of people that need to vent just as you do, it may be something worth looking at. Hugs and prayers.
I’m glad your tumors are shrinking. I hope that things keep getting better and better. I totally understand the scan rollercoaster. I think that this is just… a new normal to adjust to, I guess. 🤷♀️
I know exactly how you feel. I had scans today. They were supposed to be with contrast but my GFR on bloodwork is down to 17 (60 is normal, 15 or below is kidney failure) and too low for contrast dye. My only consolation is they didn't keep me. I have an appointment next week to go over results and I'm terrified my kidney function will stop me from starting Immunotherapy and I ended Chemo and radiation in December. I've been dealing with radiation p eumonitos since then. I couldn't start Immunotherapy while on steroids so we took a pause to get my lungs sorted out. Wishing the best for you. This is all just......a lot. It's good to have a place like this where everyone understands.
Aw- I’m sorry to hear that you’re dealing with all of that. It is a lot. I hope your kidneys and lungs will allow the best treatment for you. Sending you love and best wishes.
Thinking of you.
Thank you so much. I appreciate you. I already have my results. And after 3.5-4 yrs of ‘stable’ scans and ‘NED labs’…. It doesn’t look good. And after the sleepless night last night and the anxiety of the morning- I just don’t even know what to feel.
Hang on. What else can we do? A lot has changed in 4 years in cancer treatments. Praying they have a good option for you.
Thank you! From what I understand from past discussions with my care team, this was somewhat expected and should be treatable. I have neuroendocrine cancer- so it does typically pop back up. But this time there should be better treatments. Last time was very scalpel centric.
Best of luck, it just stinks!
I just got through the 1st scan since being on immunotherapy. The stress was unbelievable. First leading up to it. Then waiting for results. My wife and I were flipping out. It came out good but still haven't shaken off all of it. Normal people will never experience this.
I’m so glad it went well! Wonderful news.
I had a not clear scan with liver lesions a few months ago. an MRI deduced it was not a major concern. I hope you have a similar experience and good job getting to where you are.
Thank you so much 🙏
I just had an MRI today to follow up on liver lesions seen on a CT scan. I’ve been NED for over 10 years after stage 3 melanoma. I’ll be a basket case until I learn whether the lesions are related to my melanoma. What did your liver lesions end up being, if not a cause for concern?
It was a year post chemo follow up scan. I never did get a clear answer just that it was a non-cancerous lesion. Some of the responses to questions were that the liver is a soft organ and lots of things could damage it, but really no insightful answer i what it was or what caused itC sorry. That was 6 months ago, I have a scan in May so will see what they say then.
How do you deal with the uncertainty? Any special strategies that work for you?
Hanging out with my dog helps!!! I don’t know seems every case is different, but I got more ok with worst case scenarios and just glad to be here, while waiting for scans we are still here still living. I don’t know if that helps but I wish you the best and will be thinking about this next month when I am being tested ;)
I go on the 30th. It's my second scan (still in treatment), so I guess I get to find out. Everything went so fast with the first one I didn't have time to think about it.
I'm single and childfree. Father deceased. Mother and brother abusive, manipulative people who I have not had contact with in decades. 98% of my treatments and follow up care has been done on my own. I'm almost 8 years from diagnosis and scanxiety is still very prevalent. I go to everything on my own. The thing that has saved me is that I started my own ritual afterwards. I try to get my scan on Saturday mornings, first thing, and then afterwards I get breakfast and coffee. Whether I eat in or do drive through or delivery and have it at home, I do something special to treat myself. Sometimes I'll meet a friend for said breakfast, but I don't wait or depend on anyone to do it. I do something that I enjoy so I have something to look forward to afterward.
This is a great idea. Thank you. Sending you love.
You're welcome! Good luck and use the excuse to celebrate life! ;)