Looking for Anal Cancer Support

Thank you. I believe it is the right decision. It is my fault I got the cancer in the first place so I will accept my fate. I wish I would not have waited patiently with the doctors- for anyone reading this, DO NOT WAIT PATIENTLY for doctors. It will be too late. And never let a nurse PRACTIONER take you off your antidepressant because she does not like bupropion, especially if you have been on it for over fifteen years.

I had terrible, terrible guilt about an HPV cancer. I felt it was a just punishment for my many sins. I bet you’re right that the sense of guilt was tied to the desire to just be done with it all!

But the cancer wasn’t my fault, Nor is it yours. It’s just cancer. And it’s probably treatable.

I hope you’re back on your medication. They definitely should’ve known better than to take you off. Please give it some time to work. And I hope you have a therapist you’re comfortable talking to who can help you objectively look at what’s going on. If you ever just need someone to talk to, I’m happy to be a phone buddy! 💕

My cancer was also hvp related, so I know how you feel. I first chose to just let it happen and was quite calm -excepting- of that decision. really the only reason I sought treatment was for the pain. Tumor was getting larger and pressing down hard, making going to go to the bathroom next to impossible . I pretty much stopped eating because of it and went down to 89 lbs. Then i talked to Doctor MacEwen who said that the pain would be gone in 2 weeks after starting treatment. He was right on. At that point all I wanted was to be out of pain and then I could die in peace. 8 weeks later I was done with the treatment which was not anywhere near as hard as I feared, and 3 months later PET scan shows my cancer as non detectable AND blood test shows hvp virus gone. Don’t give up. Hvp can happen to anyone. In fact most of us have or had it at sometime. Some people just clear it out of their system, some people still have it with no complications and some of us developed cancer. Luck of the draw that’s all. All the old stuff about anal sex causing it is wrong. Yes it is sexually related, but even monogamous people have had it. I had to stop the guilt feelings, like I was being punished for being a sinner. Keep moving forward. There is hope. If I can help in anyway, please just ask.

Thank you for the kind words. Everyone has said the same thing about the pain, but in my case, I have been waiting since the beginning of July for treatment and the pain is getting worse as I sit in my own excrement in unbearable pain and if I move to even go to the loo my heart rate jumps to 118. One more week until I go to get sigmoidoscopy and then wait and wait and wait for histology. Oddly enough, the original al histology indicated non-hpv squamous cells, which adds to the mystery.

Actually, i was diagnosed in march 2023 with stage 2. I waited (because I didn’t like my alternatives and was told it probably was a slow growing tumor: that was wrong) until January 2024 after pet scan showed stage 3 . By then the pain was almost unbearable. So I was 9 months in pain from doing nothing and 2 weeks after treatment started…..what a relief.
Also had a fissure that was never going to heal with the tumor pressing on it.
There is hope for relief.
P.s. once I decided on treatment, it only took a week to get started. I don’t like the waiting game either.

Don't let them jerk you around with treatment. I had did 2 hospitals and was told either have this surgery which means I end up with a bag or go die. Said forget you and went to Mayos I am treated as a difficult patient but I don't care as I am the one living with this disease not you. So I call myself and get the appt's I need do NOT take we will call you back. Be firm and say 10 weeks I will probably be dead so lets get this ball rolling, ASnd it is amazing if you are kind but insistent they do find appt time. And get to Mayo MD Anderson or Soan Kettenring Any test you have within an hour you have the test results on your phone. Non of this weeks later a report Don't let the local hospitals jerk you around call Mayo's and make an appt. All the local hospital want is your money so that is why they drag you along. Put your foot down it's your body and you need to get the best care possible which at the local ban aid hospitals it is not happening

Hi – just wanted to thank you for sharing this. I’d never heard of them before and already signed up to be a mentor and recommended them to a newly diagnosed patient!

In September of 2023 I was diagnosed with anal cancer. I had been seeing the PA at the gastroenterologist’s office. She was treating what I thought were hemorrhoids. The pain was getting worse day by day. It got to the point where I could barely sit. I said this is enough. I need a colostomy. When I woke from the procedure the doctor was standing over me looking pretty guilty. I had a large tumor. It was caused by the HPV virus. I was angry. While they were prescribing creams the tumor was growing. I wasted so much time. I had 6 weeks of chemo and radiation. The radiation burned my skin so badly there were days when I could only wear a robe. Worse than that, I was left with fecal incontinence. I had to wear a heavy pad all the time. I was either in the bathroom or looking for one. The pain from the tumor stopped after the first week of treatment. I was told that the treatment continues to work even after it is stopped. That’s exactly what happened. I wasn’t declared cancer free till almost 9 months later. Due to the damage to my sphincter muscle, I had an ostomy. The surgery was done at Mayo Clinic in Florida. Dr. Luca Stocchi did the surgery. Best doctor ever! It’s almost a year since that day. I’ve gotten my life back. I’m having my first colonoscopy with my stoma next month. The nerves are starting. The fear of cancer returning is real. I’m trying to take one day at a time. Sometimes it’s not so easy.

I am sorry you are going through this and hope your colonoscopy goes well. Can I ask your age (wondering why the colonoscopy was not done sooner). Was it anal or rectal cancer? I wish you all good things.

I am 74 years old. I had had a colonoscopy 2 years prior to being diagnosed with anal cancer. It was due to the HPV virus, but when tested for it, I didn’t have it. One thing I learned from this experience is to not depend on a PA. See a full fledged physician!