Looking for Anal Cancer Support

This is a very helpful support group: https://community.macmillan.org.uk/cancer_types/anal-cancer-forum

FYI – I went through this earlier this year and I’m fine now. Go into this knowing that people with the worst experiences post in the forum, and those that sail through don’t! However, this really helped me deal with relatively mild side effects.

@mak70 - this is another helpful resource with some great educational materials: https://www.analcancerfoundation.org/

Thank you!

I am currently in remission, had emergency colostomy, surgery for tumor, radiation and chemotherapy. It's been a few years now but I might be able to answer your questions.

My big question is: how did you handle the tumor waiting for tests and treatments? My mass is 10cm in length and 6mm diameter- needless to say very uncomfortable. It drained my iron to less than 10mcg/dL and I had to get an iron infusion. I am trying to find out how long it will be to shrink

Can’t predict that, but I can share what they told me about mine, and what then happened.

I was told that the tumor would be impacted quickly, and the pain would be reduced in a matter of weeks. That’s exactly what happened.

I was also told that I’d begin to feel the effects of radiation shortly thereafter. That happened too.

So it’s like a ”U” curve where you go in with discomfort, start feeling better, and then have (a different kind of) discomfort again.

Hopefully your 2nd round of discomfort won’t be as bad. And the good news is that at least that one is curative!

Thank you,

I had emergency surgery , found out I had cancer at hospital, didn't know what a colostomy was when told I had to have one. Thought I had hemorrhoids. But I know that uncomfortable feeling, hurt so I couldn't sit down. My iron was down too, had to stay in hospital and had blood transfusions before they could do surgery. It is hard to wait for tests for sure, try to keep
positive mindset. My tumor started shrinking during radiation, had six weeks of it , surgery was at end of 2015, and my treatments started in March of 2016, along with chemo. Hope this helped, hang in there. Best of luck

I have completed radiation for stage 3 anal cancer and the PET scan show’s ned ( no sign of disease) .
I chose proton radiation vs conventional.
The pain for the year before starting treatment was awful. I paced the floor because sitting or laying was painful.
I ended up going to the California Proton cancer center in San Diego because no other cancer centers would offer me proton radiation for anal cancer. I tried 4 others. I was told it was that they didn’t have the numbers to show that it was effective. Don’t know how you get the numbers if you don’t do it, but…
Anyway, the Doctor at the proton center said that the pain I was experiencing would be gone in a couple of weeks of treatment, but I would have other side effects such as blistering , though it would not be as bad as the pain I was going through. He was absolutely correct. In 2 weeks the pressure pain I had was gone. The blisters weren’t any worse than an outbreak of herpies. Uncomfortable but livable. I started to take chemo( orally) but got diarrhea to the point of not being able to get out of the house to get the radiation so I stopped it. All in all, I had 30 sessions of radiation and about 2 1/2 weeks of chemo. yes there are lasting side effects, BM’s are not totally normal yet, but I have no pain and lomotal works quite well so my life is back to being quite normal . I hope this is helpful in making you feel better about life during and after treatment. And yes I was a little more tired, but not exhausted like others have said they were. Now 3 months later and believe my next scan in 6 months will be NED also.

@mak70, I'm glad that you found the online support group here on Mayo Clinic Connect.

Here is a list of additional discussions related to anal cancer https://connect.mayoclinic.org/group/colorectal-cancer/?search=Anal%20cancer&index=discussions

Mak, let me see if I'm understanding your situation. You have been diagnosed with anal cancer with a mass 10cmx6mm that is very uncomfortable. Have I got that right so far? Are you currently having treatment to shrink the tumor to make surgery possible?