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Anyone whose had experience with persistent anal cancer and Apr
I completed the Nigro protocol 18 months ago but my tumour never completely resolved 3 months ago it began growing again and fdg uptake went from single digits to double digit last pet scan beginning of October. I am scheduled for adominoperitoneal resection and vaginectomy second week of Dec. The surgery scares me, but I think what worries me more are the survival statistics surround persistent disease after treatment. Going through a APR surgery with a coin toss chance that it will lead to cure. I have serious reservations that the surgery will be worth it, but then allowing my current tumour to continue to grow would also be horribly painful and unpleasant.
I would love to hear from anyone who has had persistent or recurrent anal cancer that has undergone a APR and how this effected their quality of life? if they had complications due to the radiation damage and skin healing issues? Did you achieve cure or Ned at least? I guess what i also want to ask is if it was indeed worth it?
My family has a lot of cancer I have lost both parents and 2 grandparents to cancer. I watched the struggles and the suffering and I really don't want to live that life. I truly fear going through the surgery and having complications and all that comes with that only to find the cancer has spread despite the removal of so much of my body.
Anyway thank you to anyone reading and to anyone that shares their stories with me. Anal cancer is a very lonely disease it seems. I have had a hard time finding anyone in my situation that can relate, only a few online and no one in person. And I'm tired of talking to doctor google all my searching has done is rob me of hope and fill me with dread.
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My Name is Joseph, I am 80 years roving upon this good earth. Being a man of course eliminates my understanding of your current issues however, I can relate to the scariness of the unknown. I cannot imagine how frightened you must be; searching "Dr. Google" as you mentioned can be very daunting. I was fortunate enough to have a family physicians for 4 decades and he was my "Dr. Google." Nice term by the way. My surgery and resection in 1999 for a stage 3 colorectal cancer left me with a permanent ostomy and the loss of my physical abilities to appreciate my lovely wife Cecilia. What we faced together, appeared at first to be insurmountable. We couldn't imagine what the loss of our physicality relationship would do to us. But, I must share that together, ostomy and all, we continued riding our bikes as usual and the more we rode, we discovered the illusive dream of togetherness beyond our sexuality.
We did not hide from our challenge, we accepted with miles of riding and discovering levels of intimacy beyond our expectations. Do not worry or give up: there are myriad people out there who have experienced life beyond as they once knew it. Just keep writing. Write me anytime. I am there, we're there with you. Jofree and Cecilia
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6 Reactionshave you considered checking on radiation to finish eradicating the cancer. sounds like maybe some was left behind to regrow. I had 30 sessions of proton radiation for stage 3 anal cancer and have been clear now for a year and a half. will be getting another PET scan in the next couple of months, but so far I am NED.
it also seemed to resolve the HPV 16 virus. it is hard to find anyone to do proton radiation for anal cancer (they don't have the numbers to show that it works yet-don't know how you get numbers if you don't do it...) they all want to do the negro protocol. I may be wrong, but I think they will not offer regular radiation again, but that you can do proton radiation. best of luck whatever you choose.
If you are not in the anal cancer support group on Facebook it would be so helpful for you to address your concerns. You never have to feel alone with this dreaded disease as the group is so supportive, caring, and full of stories similar to ours.