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video from PCRI suggests long-term beam radiation BCR rates are 50%
Prostate Cancer | Last Active: 19 hours ago | Replies (49)Comment receiving replies
@jc76 There are currently 46 operating proton centers in the U.S.: https://www.proton-therapy.org/map/ There are many hundreds (a thousand? I don’t know…) of photon centers nationwide.
Yes, children are regularly referred to proton centers for any number of cancers and insurance companies cover those treatments without question. But, we’re not talking about children and their cancers, we’re talking about men and specifically about prostate cancer,
When it comes to prostate cancer, insurance companies regularly reject proton radiation treatments for prostate cancer because of cost and due to results of studies similar to those like that I cited earlier.
Denials for proton for prostate cancer are very common:
> https://pmc.ncbi.nlm.nih.gov/articles/PMC10915745/
> https://pmc.ncbi.nlm.nih.gov/articles/PMC8768894/
There have been so many lawsuits over these denials, that it’s hard to keep count:
> https://www.the-sun.com/money/15262090/aetna-health-insurance-settlement-lawsuit-prostate-cancer/
The issue is with proton - prostate cancer - and insurance decisions. And many insurance companies use the outcome of clinical trials to make those decisions.
Now, some hospitals go ahead and build proton centers and have agreed to get reimbursed by insurance companies for proton for prostate cancer at the same lower rate of reimbursement as for photon for prostate cancer; that is their call as they determine their bottom-lines (since they still make profit from their other cancer-proton treatments),
I’m very familiar with proton’s Bragg-Peak characteristics. That doesn’t explain the frequency of insurance companies’ denials of proton radiation did prostate cancer,
Proton radiation to treat cancers has been around well before 2006. Proton radiotherapy has been used for treating prostate cancer for many decades. When I was reviewing medical journals for proton-prostate literature (back in 2019/2020 when I was deciding on treatment), the earliest paper I found was from 1979 (https://pubmed.ncbi.nlm.nih.gov/107338/) - over 45 years ago!
The most recent studies (about proton and prostate cancer) that arc being done - COMPPARE and PARTIQoL -
> PARTIQoL: https://www.astro.org/news-and-publications/news-and-media-center/news-releases/2024/astro24efstathiou
> COMPPARE: (still ongoing)
Children will continue to receive proton radiation treatments for their cancers. But, for some reason proton radiation treatments for prostate cancer will remain controversial, with continued denials, continued lawsuits, treatment centers agreeing to lower reimbursement rates, while at other facilities men (like myself) will have no trouble getting proton radiation treatments,
It’s a fragile landscape.
Replies to "@jc76 There are currently 46 operating proton centers in the U.S.: https://www.proton-therapy.org/map/ There are many hundreds..."
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@brianjarvis
My medicare and BCBS FEP paid for proton radiation. Many of us on MCC are at the medicare age (but sadly many are much younger) and have medicare and it does cover proton. UFHPTI has a financial program to help with those who insurance will not pay.
UFHPTI also have a very aggressive appeal process when needed. They are not for profit medical facility. It is State of Florida facility. All the doctors, staff and techs are salaried state employees. Mayo employees are also salaried and neither make any more money by ordering tests, etc.
At Mayo Jacksonville I donate every year to help with medical advancement there and a special division called Good Samaritan Fund (to help those who do not have insurance or insurance does not cover their treatment). Mayo Jacksonville is building a new cancer facility to open in 2026 which will have proton radiation treatments. If that center had been opened in 2023 I would have gone to Mayo as I have been a patient there since 2006.
My mentioned of children is to show my personal experience of why medical providers are referring children and other patients to get proton verus photon. It, in my opinion had a direct relation to those on MCC discussion of differences of the two radiation treatments and why. I asked my UFHPTI R/O why it seemed so many children were at UFHPTI and he gave me his answer which I shared.
Many posters on MCC PC have also gone to UFHPTI and saw the same. The children have their own treatment rooms along the side of the complex along gantries. In the lobby I sat with many other men. You could always tell the prostate patients as we were all drinking water prior to our appointments. All of us there felt sad for all the children having to go through radiation but glad there was a radiation available to help them where 20 years almost no proton facilities were available.
When I post I try to share my personal experience with a decision, test, side affect. I asked my R/O about why so many children and shared that. I had several consultation at Mayo Jacksonville (only has photon) radiation oncology and my experience there is I never saw a child in the waiting room.
The Amercian Cancer Society list proton radiation treatments benefiting those that are children, brain cancer, eye, throat, and also list prostate. This is exactly what I saw at UFHPTI and echos my experience with proton radiation.
Young men(and there are many on MCC) that have come down with PC will be around for several decades like children. Even at my age it was important to know why children and those with with eye, brain, etc. cancers are referred to proton facilities.
My original post was a reply to a poster asked if I could explain why I chose proton over photon. I replied with my direct experiences and why I chose proton.