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Worried this might be anal cancer
Colorectal Cancer | Last Active: Apr 3 1:53am | Replies (104)Comment receiving replies
Samclembeau, Thank you for your post! Galleri blood test detected anal cancer markers and HPV16 in early February 2025 (now confirmed via HMO biopsy). My Medicare HMO feels like my cancer is slow growing and is not urgent, so I’m awaiting surgery and testing for staging at end of march 2025. I’m in SF Bay Area and I’m amazed that there are 4 proton radiation centers in SoCal but not a single one in our tech heavy area. I’m planning 2nd opinion for post surgery treatment. I’m guessing that I will need to self pay to go outside of my Medicare HMO for proton treatment in SoCal. I would love to hear more about your experience, if you have time. I have lots of planning to do while waiting for surgery and staging because I am primary caretaker for my life partner who has lots of health problems, including severe dementia. I need to plan for his care too.
Replies to "Samclembeau, Thank you for your post! Galleri blood test detected anal cancer markers and HPV16 in..."
I am a 67 year old woman
That is still in the staging and final testing phase. I did check in into the proton center in San Diego and they told me my insurance which is a Blue Cross and Medicare would cover it. I’m still trying to look at all my options as I have severe osteoporosis and urinary urgency so I’m so nervous about regular IMRT radiation and it’s long term effects.
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I am on Medicare and have supplemental insurance. since proton radiation is now accepted by Medicare it was covered 100%. I also live in the Bay area. I went to California Proton center in San Diego. Loved my doctor. He said anal cancer was his favorite to treat. BTY unless things have changed in the last year, there are only 2 proton centers in California. U of Irvine says they have(I went there for a second opinion) , but don't actually (they are affiliated with ..)and neither does UCSD. There is one in Loma Linda and the one in San Diego. The doctor I had trained at Loma Linda. It's equipment is older since it was the only center for a long time. I was told by them that they did not it do for anal cancer (don't have the numbers) told the same at MD Anderson and Bethesda, and mayo. Don't know how to get the numbers if you don't do them. "gently" ,on this web site, said not to give up so I didn't.
I just had my 9 month PET scan as well as a special blood draw that shows HPV negative. No cancer tumor either. I did very little chemo. Not sure I would even do bother with it.
so sorry about your partner. makes it ever so much more difficult because you have to be in San Diego for 6 weeks. treatment is 5 days a week for 6 weeks.
found it hard to come home on weekends because of treatment (had to stay close to toilet) . Believe me that really is the worst thing that happens. But....You will get over it. no pun intended.
I understand that UCSF will be getting proton in a few years, but doesn't help now. I think it is still possible that you can have your tumor removed surgically and not require radiation or not a much anyway. I don't know. Mine was on my sphincter muscle. so surgery was not an option. If I can help you in any way, please reach out.