My story is not much different than many (thousands) of others with a diagnosis of this rare cancer. I, like some of you, went for a routine colonoscopy following some rectal bleeding (thought to be a hemorrhoid). I am an active 54 year old mother of two beautiful young adults and married 30 years. I was fortunate in that the cancer was early stage (Stage I, N0M0 - no metastisis or lymph nodes). I was told it was HPV related (even though I had only 3 sex partners in my lifetime and had none of the other risk factors) but I had to really push for HPV testin
I had day surgery to remove a small tumor and 2 other small lesions which tested negative for cancer but positive for dysplasia. As a result of the invasive nature I continued with standard treatment - 5 1/2 weeks of radiation (5040 cGY in 28 fractions to anal canal and 45 Gy to regional nodes) and 2 cycles of 5Fu and mitomycin-C. I worked full time through the second week of treatment and then part time @ home for the duration.
My treatments were completed in May 09. One week after my radiation was completed, I ended up in the hospital with severe neutropenia, a UTI and proctitis. This resolved in about two weeks and I went back to work part time until July when I started back full time. I have healed well but have a few lingering issues with muscle fatigue and some hip/back pain. Physical therapy, yoga and stretching help. I also have recurrent bowel issues (narrow/frequent/mucous) and some weird vaginal sticky discharge... Careful watching of diet, hydration, exercise and sleep have helped. The most significant issue has been the development of an anal abscess and subsequent fistula (4-5 months post treatment) which required minor surgery to correct.
I have to say, with all the minor post treatment bumps, my recovery has been pretty well. I am scared about recurrence and every follow up visit brings new fears. I was diligent about research - all the websites - and still am. I get copies of all the progress notes from doctor visits, CT scans and labs.
In December I received the thumbs up (NED -- not sure what that means) and I continue to do follow up for the fistulotomy (just to be sure no more abscesses/fistulas develop). I have visits scheduled every three months and another set of labs and a CT scan scheduled for June 2010 (these have been every six months since treatment ended).
I wish you all the best in your journey through this god awful thing called anal canal cancer. ACW189