After treatment discussions

73 years old when I did the 5 Proton radiation treatments at Mayo Phoenix. Last treatment was on 4/26/23 and my three-month PSA was less than .1. They told me it was considered undetectable. I started with a PSA of 2.9 and was two cores of 3-4 and 2 cores of 4-3 all from the same area that the MRI showed a 7 mm lesion. That was 4 cores out of 30 cores taken due to my 220-gram prostate. I have had no trouble urinating after radiation and actually seem to flow better. Like you I still get up every two or three hours at night, but I am fortunate as I have never had trouble going back to sleep. I have even almost fell forward into the wall when falling asleep on the toilet. I am well pleased with my decision so far and I did get the SpaceOar Gel inserted.

mikewo, That is great!!! Wish my PSA had gone down that much. But you had a lower one to start I was 3.75.

As I mentioned Mayo Jacksonville does not have protron. I wish I had lived closer to Phoenix or Rochester. I have learned from posts about the 5 treatment proton treatments that seem to be doing great in treating prostrate cancer. Gosh just 5 treatments in one week and you are done. I went 6 weeks 5 days a week.

I talked to my Mayo primary care doctor and he says the high dose proton treatments are not showing more side affects as was expected. My treatments at UFPTI was great but wish I could have stayed at Mayo (as all my other health care is there) for proton but just was not available and did not want the extra concern with photon.

The five treatments are not all in one week. They are Monday, Wednesday, Friday, Monday, and Wednesday. I am lucky to live in the Phoenix area, but it was still a 35-minute drive each way. My oncologist wanted to do 28 radiation treatments and then I stated looking at CyberKnife and its 5 treatments and all of a sudden when I said I was going to go there he said, "Oh we can do 5". After looking at the bill$ that each Proton session charged Medicare and my insurance I can see why he wanted to do 28 se$$ion$$. From what I understand Mayo Jacksonville is building a proton facility. I hope it will be one of the newest MRI guided proton treatments. As of today, I am 158 days post radiation with no side effects that I am aware of. Good luck to you and I hope we both don't need luck.

Mikewo: where did you hear about the MRI guided proton treatments? I had my 5 treatments with the MRIdian in February but there was no real time MRI guided proton therapy available anywhere. That is a big jump in technology and if it does exist now, it would be good to know. I heard it was being worked on but nothing available in the marketplace.

mikewo, can you share what the bill$ were for each proton session? I am trying to figure out if I can switch to straight medicare and pay 20% of costs vs cost of Medicare Advantage in or out of network. Thanks.

mikewo, Thanks for your information. I did 30 treatments over 6 weeks, 5 days a week. I was 40 minutes from UFPTI each way. Got used to it.

Yes Mayo Jacksonville is building a new cancer center that will have proton radiation. Problem is that my original Radiologist/Oncologist (R/O) at Mayo Jacksonville said they would not offer proton radiation at the new center for prostrate cancer. This did not make any sense to me as Phoenix and Rochester have very robust Proton therapy programs for prostrate cancer. I contacted Patient Advocacy and they got back was under discussion and no decision made yet.

Guess what? The new Proton Radiation Facility for Mayo hired one the Radiology/Oncology Specialist at UFPTI to manage the new proton radiation center at Mayo Jacksonville.

I have not heard of MRI guided treatments. I know UFPTI used markers and low dose xrays to guide proton beam. My R/O treated my entire prostrate and margins to make sure they treated all areas in case the original MRI and biopsies missed a cancer area and that area would continue to grow cancer cells.

When you did the 5 treatments how long were sessions? I assume the 5 treatments are high dose. My primary care doctor said research is showing the high dose is NOT causing additional side affects than the lower dose 6-8 weeks treatments. Sure wish I had the options and could have done at Mayo. I say this because all my other medical care is at Mayo and would have been great to have everything there including follow up care that will be done at UFPTI because Mayo urology does not want to treat if you had radiation treatment locally.

I was shocked to see Medicare bill. UFPTI charged 5,000 for Proton treatment each session and another 1000 for the special xray and reading to guide treatment. Medicare approved 1000 for each session and 500 of the xray reading. I have BCBS Federal which picked up what Medicare did not pay.

Isn't it strange when you question treatments and alternatives that things seem to change on treatments.

josgen,
I did not have the 5 treatment but the 30 treatments of proton. I have medicare and BCBS federal. I am looking at my Medicare MSN.
Intermediate proton beam radiation treatment: Provider charged: 5,300.00. Medicare approved amount 1,071.48. Medicare paid 839.76. So I would have had to pay 214.23 out of pocket but my BCBS pays what Medicare does not.

If you have xray guidance with your treatments that is another charge. On mine I saw it different. On several it was 350.00 charged, approved 72.35 and paid 56.72. My out of pocket would have been 14.47.

If you have other tests done they can be very very expensive. I think my PSMA (done at Shands/co located next to UFPTI) was 18,340.00 with Medicare approving 18,340.00 and paying 5,741.68. My nuclear study CT was 17,082.00 Medicare approve all and paid 1,055.21. As you can see sometimes Medicare pays below approved amount and has to do with something about Federal, State, and local rules. My out of pocket for the 17,082 would have been 269.19 not the difference in approved and what was paid.

Does this help you with some figuring? Basically Medicare will pay 80% of the approved amount. Your provider must be a Medicare Acceptance Facility and thus can only bill you for what Medicare approves. You will have to pay the 20% out of pocket if you do not have secondary insurance.

I will have to check it out or maybe it was my wishful thinking, or I confused it with the photon radiation with MRI rather than with the real time CT scan.

Thank you jc76. Very helpful even though it doesn't make sense!

I think but maybe not you had asked mikewo about Medicare payments for proton. I sent you what I paid for proton payments at UFPTI. Was it not you that asked for what Medicare pays for proton treatments? It is my understanding Proton costs are much more than Photon.

I mentioned MSN it means Medicare Summary Notice and will list what a provider charges, what Medicare authorizes, what Medicare paid, and what you are responsible for. Basically 80% Medicare and 20% you.

I cannot list all the explanation codes but they cite the decision for what Medicare paid. So even if Medicare authorizes something it may not be what was paid due to other criteria they use to pay.

I am not sure where (if it were you asking) you are considering going but costs should be close. If I sent you something you were not asking for, sorry!