Patient movement during proton therapy more problematic than photon?

I'm pretty sure that Mayo Clinic FL doesn't take Medicare Advantage plans at all, and I assume that policy would apply in Rochester as well.

I had proton for a different cancer and there were patients there who were repeating appeals to their Medicare Advantage Plans for coverage. The md may have been exaggerating, maybe not exactly lying.
I've had cause to look at prostate cancer treatments recently. I'd like to suggest that you look at treatments with MRI guided photon. MRI guidance isn't available wth Proton, yet. I'm partial to the MRIdian Viewray, because the margins might be smaller than with other machines. The treatments are hypofractionated (higher dose lower number of treatments). It is usually five treatments 40GY total with hypofractionated and 28 treatments with proton or photon without MRI guidance.
The MRI guided treatments close down when there is target movement.
You should, though, talk to a proton specialist and at least one radiation oncologist. I found it easiest to have video consults and then travel for treatment.
Best wishes

@carter777 Sorry you had to go through what sounds like an active surveillance process of waiting because of your doctors interpretation of the initial tests.

I had narrowed my radiation choice down to Proton or a specific type of photon radiation machine called the Linac MRIdian. There are many differences in the machines used for photon and for proton and the differences are numerous and do impact the experience and results.

My focus was, of course on effectiveness but also on side effects and quality of life. The MRIdian was one of two types of photon radiation machines that had a built in MRI so what they saw in real time, they treated. It makes a big difference ( google the mirage randomized trial). Proton did not have that type of built in MRI machine available. My side effects were minimal with initial urination restrictions which were handled by taking Flomax. If the Proton machine had a built in MRI, I might have chosen it.

Medicare did pay for my treatment but money is a component in the decision making process of hospitals and there have been a couple of comments I have seen regarding Mayo and other hospitals about backing away when money was no longer available. Having said that, they are a center of excellence with a good record with treating prostate cancer.

If I were you, I'd contact UFHPTI in Jacksonville and send for their free packet of information. If you end up going to Florida, or Loma Linda in California, think of it as a "radiation vacation." If you live up north, go in the late fall/winter. Many do. Sorry you have an Advantage Plan, but UFHPTI can tell you immediately if they've worked well or not with your insurance carrier. Many oncologists have neutral or negative opinions of proton therapy, apparently, but most of those have zero experience treating patients with it, according to Dr. Gary Larson, an oncologist who has treated patients with both photon and proton therapies. If you Google Larson, you'll find him here: https://integrishealth.org/doctors/gary-larson. Here's an article he posted online: https://www.quora.com/What-are-the-best-treatment-options-for-prostate-cancer/answers/19334097 .

Thank you for your response, @tedalmon. I live in Minnesota and my insurance company has a contract with the Mayo Clinic for coverage. Mayo Clinic doctors are considered "in-network" providers for my plan. For example, my evaluation visit with a Mayo Rochester RO was covered, as is my upcoming PSMA PET scan at Mayo Rochester. Insurance coverage state to state is complicated and I appreciate informing me of your opinion about Florida coverage.

Thank you, @gently. I like your response and will investigate MRI guided photon. The coordinated guidance aspect of radiation therapy is an area that I have not really examined, and I did not realize until I saw my Mayo RO that there were these marked differences between the flavors of machines.

Also, if you don't mind me asking, when you had proton therapy did you have insurance through an employer, or Medicare, or something else? Did your RO at the time recommend proton or did you push for it personally? Thanks so much, wish you well!

@bens1 Thanks for your response and your good thoughts. Regarding the progress of my disease, I asked my Mayo RO if it was common for a case to go from an initial biopsy result of benign lesion to a second biopsy only 9 months later that shows pretty extensive Gleason 4+4 adenocarcinoma in multiple areas of the prostate. The RO said he had never seen this before and wondered aloud if possibly my initial biopsy samples were confused with those of another patient. But, I know that biopsies sometimes miss the cancer and that doctors are human and make mistakes sometimes, and that maybe the cancer was not present at all at the time of the initial biopsy. This shall remain a mystery and I accept it.

I really appreciate the info about the built-in MRI photon machines and what I take to be your excellent results with that therapy. I will definitely educate myself on this and look at the randomized trial. This is great info for me.

I was really drawn to the idea of proton therapy causing (much?) less damage to surrounding healthy tissue and (probably?) minimizing the chance of a 2nd cancer down the road caused by the therapy itself, such as bladder, rectal, bone, lymphoma or leukemia. But I am a layman trying to learn, and admit that in my current heightened state of anxiety I maybe have been influenced by a "new-shiny-object" effect. I will learn more and seek out the views of expert RO's and technologists, as well as the valuable sharing of experience from members of this group.

Regarding insurance, I think my Mayo RO may not have been aware of a new contract this year between the Mayo Clinic and my insurance company that puts Mayo physicians "in-network" for my plan. In fact, having Mayo in-network was a big factor in my choice of plan.

Thank you again!

@5galloncan Thank you for the information you posted regarding UFHPTI, and about Dr. Gary Larson. This is valuable to me, I look forward to learning more every day. I will definitely check them out!

hi, Carter,
my treatment was seven years ago at CAProton. Original Medicare patients were automatic. Medicare Advantage waited the longest. Private insurers responded on appeal. CAProton was good at persisting and prevailing. I can recommend Carl Rossi (I'm probably not the only one who has to be careful not to call him Carlo). https://www.californiaprotons.com/team-member/carl-rossi-md/ You might not want to travel to a beautiful beach town, la jolla, and be stuck there for a month or so. He wasn't my physician, though.
The viewrays are hard to find partly because of the expense and partly because of a bankruptcy. Repairs were impossible until a wealthy Indian american intervened. The viewrays needing repair were immobilized. Meanwhile other companies filled the gap. The margins for the old viewray was 2mm, better than the 3-5mm for the other machines. A change in software for the viewray or improvements in other MRI guided machines may have changed the Viewray advantage. Which is to say in an extended fashion, you might ask about the the ROs about the margins. There are several Viewrays in CA and I know of one in NY. When I last spoke with Mayo there were none operative there.
No one recommended proton for me. Doctors were sidling up to whisper that I was making a big mistake. Who is your RO?

It's interesting that while I was at UFHPTI in March/Apr of this year getting my 29 proton treatments, they held biweekly men's meetings for those getting prostate treatment. To a man, when asked, nobody reported that any urologists or doctors outside the proton community recommended or mentioned proton treatment to them. I'm talking about dozens of men over a 6 week period. So the thousands of men who have been fortunate enough to find out about and receive this treatment (in my opinion), had to discover it for themselves or find out from men they met who shared with them about proton therapy for prostate cancer. I discovered my prostate cancer by chance when my PSA began climbing a year ago. I see a nurse practitioner for regular medical treatment and she ordered a 3T MRI and everything cascaded from there. She actually recommended I seek TULSA up in Tampa, FL, but after exploring it, I didn't want to chance the cash expenditure on something that likely wouldn't get all of the cancer. So through my own research, including forums like this one, and visits with 6 different physicians treating with different therapies, I ended up at UFHPTI in Jacksonville. Prostate Cancer is one strange malady where you have to research the many treatments available and then pick your own poison before the clock runs out. On top of all of that, then you wait and see if you were correct. Sometimes you can wait for years to find out. But considering the alternative of finding out too late that you have advanced prostate cancer, it's not bad to find out early and then make your own decision. Good luck to all.