Anyone else have Anal cancer: What treatments did you have?

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.

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

@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?

@colleenyoung I’m following as many groups as I can!! 🤦🏼‍♀️

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!!!!!!!!!!!!!!!

@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.