Anorectal Squamous Cell Cancer w Protruding Externally From Anal Verge

Had anal cancer 2 yrs ago. 3a also. I had proton radiation and understand what you mean by needing to go to the toilet NOW. While some of my sphincter muscle will never be the same the tumor is gone. No surgery necessary. Maybe what you are feeling is scar tissue? Pet scan will tell.

Hello!
Your story sounds a lot like mine. It began almost 4 years ago. I thought my hemorrhoids were acting up. I saw my gastroenterologist several times and told them that I felt like I was sitting on a golf ball. They never took a look…only kept prescribing creams. Finally, I insisted on a colonoscopy. That’s when it all began. Six months wasted. Needless to say, I never saw that doctor again. Chemo and radiation for six weeks. Pill form and two infusions. The radiation was rough on my skin. It caused me to have fecal incontinence. I spent all my days either in the bathroom or looking for one. We had installed a bidet over our toilet and it was my go to place for some comfort. A year later, my doctor recommended a colostomy. I sobbed in his office when he told me. I was terrified. After educating myself as much as possible, I went ahead with the surfer and have never looked back. For me, it was life changing. I could finally function again. Yes, there’s a lot to learn and at times it can be so overwhelming. My scans have all been great. One important thing to know…the treatment continues to work even after it’s completed. It can take up to a year to do it’s job. So don’t panic. Doctors don’t always tell you everything upfront. I’m 76 years old and still going strong! You will too. Best wishes!

Hello

I am a little ahead of you. My cancer was staged at 2A but completely in the canal no external protrusion. I finished treatment in December. At my 3 month scan the images showed it reduced by a little more than half but reported likely residual tumor or partial response. My surgeon on examination believes it is a radiation damage ulcer. My 6 month scan is next month. I was very hopeful that I would have had a better answer at 3 months but my doctors still believe this will respond. So like you I am still waiting with the dread of surgery. I feel well and have gone back to fairly normal activities but whenever I have a hiccup like irritation with a bowel movement my brain automatically goes to the thought that it is still there. I’m am trying to teach myself that I need to learn to live with uncertainty because even if my next scan is positive there is always the next one. My mantra which was shared with me by a relapsed cervical cancer survivor is: Just live every day as it is and fight hard on the days that we have to. While this may not answer your questions I hope it helps you realize you are having a completely normal reactions and you are certainly not alone as I think we all feel the same at some level.

Hi! Your issues are very familiar to me. My anal cancer was treated with the Nigro protocol- mitomycin infusion early, 5 weeks of daily radiation and daily capecitabine. My tumor was small (some of it removed for biopsy) and only one lymph node seemed involved. I was soooooo tired by the end of treatment. I lost weight and ran to the bathroom frequently - when I wasn’t sleeping. I did sitz baths for my bottom for several weeks. I’ll admit my bottom still feels sort of like a prizefighter’s cauliflower ear…bunchy and protruding in places. I just had a follow-up PET and it was clear. My treatment ended in November and I now have most of my energy back and have gained weight. I still have bad bathroom days and wear a pull-up when I am going out for security. Pelvic floor physical therapy has helped me with control and if I have a day of travel I take prescription lomotil which is better than immodium and slows things down. Doc also suggested Metamucil to bulk stool for better control which seemed odd but it really helps. All this to say, recovery is slower than one would like and worrisome. I do hope that soon you’ll have some confirmation that your cancer is indeed gone. Sending best wishes.

@samclembeau Thank you for kindly replying and sharing with me. So glad to hear you did not have to under go surgery. Surgery is something I hope I can avoid, not sure I will under go if this treatment is not successful. The external piece seems to be the same as before treatment, maybe a bit smaller. In the beginning before my colonoscopy, I thought it was a hemorrhoid, never did I think it was a protruding tumor. During radiation treatments I actually thought it had gone away, but I think it was just hiding behind all the inflammation in the anal area. Once radiation stopped and the inflammation calmed down I discovered it was still there. As for my sphincter muscles, no they are not the same. I hope as time goes on that will improve and I will have more control again.

Thank you again for sharing with me. I wish you the best in years to come!

@rioa21
Hello Rioa, thank you for replying to me and sharing your story. Wonderful to hear that you are surviving and doing well now. I admire your courage to go through with the colostomy surgery, sounds like it was the right decision for you and has brought you peace. Our stories are very familiar! I started out thinking I had a hemorrhoid and honestly kept going for a while thinking it would calm down on its on. Then in late December 2025, I had in incident where I passed a large amount of blood, even then I thought maybe the hemorrhoid was internal and had just burst. The 3 weeks later I had another incident passing a large amount of blood so I scheduled a colonoscopy. Life as you know, changed that day. It’s very shocking to hear what you went through with that gastroenterologist. Glad you gave him the boot!

Now post treatment plan, I feel very blessed that I am able to have somewhat normal BM’s. During the treatment I dealt with very loose bowls throughout the day and evenings, it was miserable. The pain, burning, skin irritation, not just effecting the anal area but the vagina as well. I cried a lot, prayed a lot asking for healing. The Oncologist told me that after the treatment stopped I would feel worse and this would peak at about 3 weeks post. For me, as for today (6 weeks post treatment) I felt better with each day forward. My only issues in with my sphincter muscles. When my body says go, they are not working well enough to hold things till I can get to the toilet. I can only hope in time this will improve. My biggest issue is the fatigue, it’s awful! Spend a lot of my time napping, struggle to do the smallest of task. I hope it too will move on quickly as I want to return to work in July.

How did you do through the early months post your treatment? Did your tumor protrude externally? If so did it ever disappear at some point? It worries me terribly that it’s not shrinking away. I am so thankful for you and the others here! 🩷 We have our family and friends to talk to, and even our Doctors, but talking with people who have or are currently living with this awful cancer is what we need. You have to go through it to understand and relate. Take care and hope to hear more from you soon. Hugs!

I was diagnosed with anorectal squamous cell cancer in December 2025. I completed my radiation and chemotherapy in March 2026. I have a different problem. I cannot have a regular BM because of rectal stenosis. I'm taking MiraLAX every night because I cannot pass anything that is not liquid. I am terrified of a bowel obstruction. Has anyone else had this problem? Do rectal dilaters help? My doctors seem to be at a loss as to how to help, just keep telling me to increase my fiber which makes me much worse. I have had my post treatment CT and MRI and have a suspicious spot in my liver. I'm so frightened .

@kaye115ky hello. I am not sure where you are located or what resources you have available but you might look into pelvic PT. I have been doing PT since I finished my treatment. Mine is for vaginal issues but I do know she also deals with anal/rectal stenosis. Not sure if it is the answer as everyone seems to heal differently but worth the question. As to being scared that’s normal most of us are at some level. When I had my 3 month scan I had a thyroid node light up on the PET. They did an ultrasound and decided it wasn’t anything they wanted to follow up on. I was also afraid it was spread from the Anal cancer. My rad onc told me that since I didn’t have any detected node disease when I was diagnosed that it was unlikely to have a distant spread without a local node spread. I don’t know your details so not sure if it applies but just thought to pass that on. In any case just try not to jump to conclusions until you know. I did and it wasn’t helpful. Wishing you the best

I wish to Thank You so much for your uplifting response. I'm trying to keep a positive attitude, I did see my oncologist yesterday and he had a positive attitude also saying since I had no local node spread it was very unlikely to be metastasis. He ordered another MRI just to make sure. I do live in a rural part of KY but we are trying to find someone to do pelvic PT in a reasonable driving distance. Again Thank You for the advice and the uplifting message.

@kaye115ky