I was diagnosed with stage 4 squamous cell cancer, and I’m not sure if was rectal cancer with impingement of the anal canal, or anal cancer growing into the rectum, or a bit of both. That was 10/21/24. By 11/18/24, I started two rounds of chemo (5-FU and mitomycin), and six weeks of weekday radiation. I was done with treatment 12/31/24 (Happy New Year!). I spiked a fever four radiation treatments before the end, and was hospitalized. I’ll be honest, the pain associated with radiation was so bad, my hospitalization lasted a month, primarily for pain control. Every bowel movement was excruciating for weeks. It’s so much better now, but it was really bad for about a month. I lost about 35 lbs, and struggled to eat. I live alone, so the month of February was rough trying to care for myself.
Fast forward to July; repeat PET scan showed the cancer was gone. I was elated! I still am quite thankful the treatment worked, but I will say, the symptoms of treatment persist; neuropathy, cramping, rectal bleeding, and incontinence. Healing is not linear, things will be better one day, then worse the next. I still think I’m improving slowly, but it is very slow, so a lot of patience is needed. My biggest issue currently is intermittent incontinence, which brought me to this support site. I hope to learn from others’ experience what to expect going forward and what has worked or not worked for others to improve their circumstances relating to this.
Best of luck with everything! I hope some of this insight into my experience helps.
I was diagnosed with stage 4 squamous cell cancer, and I’m not sure if was rectal cancer with impingement of the anal canal, or anal cancer growing into the rectum, or a bit of both. That was 10/21/24. By 11/18/24, I started two rounds of chemo (5-FU and mitomycin), and six weeks of weekday radiation. I was done with treatment 12/31/24 (Happy New Year!). I spiked a fever four radiation treatments before the end, and was hospitalized. I’ll be honest, the pain associated with radiation was so bad, my hospitalization lasted a month, primarily for pain control. Every bowel movement was excruciating for weeks. It’s so much better now, but it was really bad for about a month. I lost about 35 lbs, and struggled to eat. I live alone, so the month of February was rough trying to care for myself.
Fast forward to July; repeat PET scan showed the cancer was gone. I was elated! I still am quite thankful the treatment worked, but I will say, the symptoms of treatment persist; neuropathy, cramping, rectal bleeding, and incontinence. Healing is not linear, things will be better one day, then worse the next. I still think I’m improving slowly, but it is very slow, so a lot of patience is needed. My biggest issue currently is intermittent incontinence, which brought me to this support site. I hope to learn from others’ experience what to expect going forward and what has worked or not worked for others to improve their circumstances relating to this.
Best of luck with everything! I hope some of this insight into my experience helps.
@labfarm3
I was diagnosed with squamous cell also 19 days after losing my husband. I had 27 chemo and radiation treatments and our story could a carbon copy. I finished treatment 6-19-2024 and my symptoms are almost identical to yours. I was in the hospital and they put some stuff on my burns that cause me to to have 4 th degree burns Very painful and even more painful with each bowel movement. Somedays are better than other but they are telling me it might never get any better but I am cancer free as of now
Good luck with the future that we have to look forward too
I was diagnosed with stage 2, no Mets but lymph node involvement, in July 2023. Had standard chemoradiation for 6 weeks and was cancer free for two years until September when a very small lesion appeared. So small the MRI did not reveal it but the surgeon felt it, ordered a PET scan, and the area lit up. So now I’m scheduled for a colostomy. I’ve had no serious issues for the past two years and my life was normal in every respect. This is certainly a disappointment and the decision and waiting is quite stressful.
why are you getting a colostomy if you are cancer free. I was told I would have to have one after 5-6 hours of surgery or go die. Not my idea of life I did a mayo trip no surgery Just somebody at the hospital wanted to make a ton of money The heck with the patient just make money Once they do all the surgery you cannot go back to normal bowel movements as they take out all that plumbing Get a second or 3rd opinion before during such a radical surgery I got a 3 rd opinion and literally it save my butt!!!!!!!!!!!!!!!
There is a new trial with an immunotherapy drug dostarlimab, drug maker GSK, trial performed at Memorial Sloan Kettering Cancer- instead of using standard treatment, chemo, radiation, surgery, it proved to be successful with getting rid of tumors- https://www.nejm.org/doi/full/10.1056/NEJMoa2404512
from a New York Times article, 4/27/2025:
"It is approved as a treatment for uterine cancers with mismatch repair mutations and is included in clinical guidelines for the treatment of rectal cancer, based on an earlier small study."
I am recently diagnosed with Stage 3 and am expected to start radiation & chemo treatment in December. I don't sleep much since the diagnosis and have spent a lot of time looking things up online. I have been so taken aback by the options - it seems like the protocol was created in the 1980's and we're all supposed to roll with it. I asked my surgical oncologist yesterday why I couldn't choose to simply remove everything and have a colostomy bag. Maybe some chemo since it has spread but that's it. I'd rather poo in a permanent bag than on myself, damage my hips, have incontinence, etc. He said no one has ever asked him that. The James at OSU offers an online 2nd opinion (Dana Farber does, too, but it cost several thousand versus OSU's flat fee of $800.) My family is putting the money together to So when I saw your post I looked into it. There IS a small subset of anal tumors that have mismatch repair mutations. I don't know if Memorial Sloan would accept an anal cancer patient into their study, but maybe. The problem would be that my current team has never talked about or mentioned genetic testing of the tumor. I'm guessing most people being treated out of local hospitals have not.
I have just finished treatments for anal cancer, the last radiation two weeks ago. I had a total of 33 radiations and 2 weeks of chemotherapy. Almost all of my open skin has healed over, but I still have something going on in my rectum, I still have painful bowel movements and a stinging that remains for about 3 hours after. My stool is soft and the the degree of discomfort varies day to day. I am still weeping from a very small area and that makes life trickier.
Has anyone lived through this and will it heal and pass?
I have just finished treatments for anal cancer, the last radiation two weeks ago. I had a total of 33 radiations and 2 weeks of chemotherapy. Almost all of my open skin has healed over, but I still have something going on in my rectum, I still have painful bowel movements and a stinging that remains for about 3 hours after. My stool is soft and the the degree of discomfort varies day to day. I am still weeping from a very small area and that makes life trickier.
Has anyone lived through this and will it heal and pass?
@johnmac14
Hello. I am about where you are. 3 weeks from last treatment. If no one has told you you can try Domeboro soaks for the weeping part. My oncology PA gave me some samples it was like magic just dissolved a packet in a sit bath. It is OTC can get it on Amazon as well. Your doing good!
Anal cancer due to HPV 16. I had IV mitomycin first day and 5 weeks of radiation taking xelota 2x a day on radiation days. The first few weeks were fairly manageable. The last two and the month following were quite difficult. The xelota info said I could get hand and foot rash/peeling. Instead I got it on my face and couldn’t wear my classes or a face mask because my skin peeled and bled. Dose was reduced. My head hair did change texture but did not fall out. Pubic hair did fall out. My radiation oncologist encouraged me to use a vaginal dilator during radiation to move my bladder and ureter to avoid radiation strictures. It was unpleasant but I am able to urinate normally. My bowels are still recovering and I have had a few accidents, but mostly am beginning to trust signals again. My first week of bowel movements was screamingly painful. Sitz baths helped as did steroid ointment for that area. I still wear a pad when going out for security. I was very very tired for several weeks. Not ever a napper, I would lie down to read and end up falling asleep for hours. I am just getting my energy back and my last treatment was end of Nov. I lost over 10 pounds and have had trouble gaining it back. I don’t think my absorption is fully functional yet. My guts still hurt at times and I take meds for pain and lomotil (much better than Imodium) for diarrhea. Pain is getting better and I’m able to reduce meds now. I’ve had a good team that is responsive and supportive. I and hope my upcoming PET scan shows I am cancer free. Good luck on your journey.
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Thank you for the support and I agree and always advise others that if they do something for someone else, it will get them out of their own head.
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1 ReactionI was diagnosed with stage 4 squamous cell cancer, and I’m not sure if was rectal cancer with impingement of the anal canal, or anal cancer growing into the rectum, or a bit of both. That was 10/21/24. By 11/18/24, I started two rounds of chemo (5-FU and mitomycin), and six weeks of weekday radiation. I was done with treatment 12/31/24 (Happy New Year!). I spiked a fever four radiation treatments before the end, and was hospitalized. I’ll be honest, the pain associated with radiation was so bad, my hospitalization lasted a month, primarily for pain control. Every bowel movement was excruciating for weeks. It’s so much better now, but it was really bad for about a month. I lost about 35 lbs, and struggled to eat. I live alone, so the month of February was rough trying to care for myself.
Fast forward to July; repeat PET scan showed the cancer was gone. I was elated! I still am quite thankful the treatment worked, but I will say, the symptoms of treatment persist; neuropathy, cramping, rectal bleeding, and incontinence. Healing is not linear, things will be better one day, then worse the next. I still think I’m improving slowly, but it is very slow, so a lot of patience is needed. My biggest issue currently is intermittent incontinence, which brought me to this support site. I hope to learn from others’ experience what to expect going forward and what has worked or not worked for others to improve their circumstances relating to this.
Best of luck with everything! I hope some of this insight into my experience helps.
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1 Reaction@labfarm3
I was diagnosed with squamous cell also 19 days after losing my husband. I had 27 chemo and radiation treatments and our story could a carbon copy. I finished treatment 6-19-2024 and my symptoms are almost identical to yours. I was in the hospital and they put some stuff on my burns that cause me to to have 4 th degree burns Very painful and even more painful with each bowel movement. Somedays are better than other but they are telling me it might never get any better but I am cancer free as of now
Good luck with the future that we have to look forward too
@ellyns, the waiting is hard. You may also wish to follow the discussions in the Ostomy support group here: https://connect.mayoclinic.org/group/ostomy/
Feel free to ask any questions as you prepare for your colostomy. When are you scheduled for surgery?
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2 Reactions@colleenyoung I’m following as many groups as I can!! 🤦🏼♀️
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1 Reactionwhy are you getting a colostomy if you are cancer free. I was told I would have to have one after 5-6 hours of surgery or go die. Not my idea of life I did a mayo trip no surgery Just somebody at the hospital wanted to make a ton of money The heck with the patient just make money Once they do all the surgery you cannot go back to normal bowel movements as they take out all that plumbing Get a second or 3rd opinion before during such a radical surgery I got a 3 rd opinion and literally it save my butt!!!!!!!!!!!!!!!
@charlotte12
I am recently diagnosed with Stage 3 and am expected to start radiation & chemo treatment in December. I don't sleep much since the diagnosis and have spent a lot of time looking things up online. I have been so taken aback by the options - it seems like the protocol was created in the 1980's and we're all supposed to roll with it. I asked my surgical oncologist yesterday why I couldn't choose to simply remove everything and have a colostomy bag. Maybe some chemo since it has spread but that's it. I'd rather poo in a permanent bag than on myself, damage my hips, have incontinence, etc. He said no one has ever asked him that. The James at OSU offers an online 2nd opinion (Dana Farber does, too, but it cost several thousand versus OSU's flat fee of $800.) My family is putting the money together to So when I saw your post I looked into it. There IS a small subset of anal tumors that have mismatch repair mutations. I don't know if Memorial Sloan would accept an anal cancer patient into their study, but maybe. The problem would be that my current team has never talked about or mentioned genetic testing of the tumor. I'm guessing most people being treated out of local hospitals have not.
Hello,
I have just finished treatments for anal cancer, the last radiation two weeks ago. I had a total of 33 radiations and 2 weeks of chemotherapy. Almost all of my open skin has healed over, but I still have something going on in my rectum, I still have painful bowel movements and a stinging that remains for about 3 hours after. My stool is soft and the the degree of discomfort varies day to day. I am still weeping from a very small area and that makes life trickier.
Has anyone lived through this and will it heal and pass?
@johnmac14
Hello. I am about where you are. 3 weeks from last treatment. If no one has told you you can try Domeboro soaks for the weeping part. My oncology PA gave me some samples it was like magic just dissolved a packet in a sit bath. It is OTC can get it on Amazon as well. Your doing good!
-
Like -
Helpful -
Hug
1 ReactionAnal cancer due to HPV 16. I had IV mitomycin first day and 5 weeks of radiation taking xelota 2x a day on radiation days. The first few weeks were fairly manageable. The last two and the month following were quite difficult. The xelota info said I could get hand and foot rash/peeling. Instead I got it on my face and couldn’t wear my classes or a face mask because my skin peeled and bled. Dose was reduced. My head hair did change texture but did not fall out. Pubic hair did fall out. My radiation oncologist encouraged me to use a vaginal dilator during radiation to move my bladder and ureter to avoid radiation strictures. It was unpleasant but I am able to urinate normally. My bowels are still recovering and I have had a few accidents, but mostly am beginning to trust signals again. My first week of bowel movements was screamingly painful. Sitz baths helped as did steroid ointment for that area. I still wear a pad when going out for security. I was very very tired for several weeks. Not ever a napper, I would lie down to read and end up falling asleep for hours. I am just getting my energy back and my last treatment was end of Nov. I lost over 10 pounds and have had trouble gaining it back. I don’t think my absorption is fully functional yet. My guts still hurt at times and I take meds for pain and lomotil (much better than Imodium) for diarrhea. Pain is getting better and I’m able to reduce meds now. I’ve had a good team that is responsive and supportive. I and hope my upcoming PET scan shows I am cancer free. Good luck on your journey.