Starting Proton Treatments for Prostate Cancer: Any experiences?

@ksellers3 I had my Tulsa done at Mayo in Rochester Minnesota. I had to wait a little over two months for the procedure, but I figured if they weren’t worried, I shouldn’t be either. I liked Mayo because it is Mayo, and Medicare covered the procedure there. I also knew any follow up would be world class.

@dderiso my insurance has denied 3x so far. We’re at the fourth and final appeal level, with an outside review board. Should get an answer this week. If denied again, I will need to decide whether I pivot to photon therapy or try again under my wife’s insurance January 2nd for proton. Her employer just had their annual open benefit enrollment. I’ll be covered starting next year, but no guarantee her plan will cover the proton therapy and I lose TIME waiting. Tough call. I just messaged my oncologist about the optimal timing of starting radiation after beginning Abiraterone to ensure I’m still within the appropriate window if I wait.

I was diagnosed with Stage 4 Prostate Cancer in 2018. Out of my 12 biopsies there were 8 with a 5-5 or 10 on the Gleason scale. I immediately went in for a CT/PET scan. The scan showed it was inside and out throughout the Prostate and one lower lymph node. I am otherwise healthy and active daily. I was 67 when I was diagnosed.

The Doctors immediately schedule me for a Lupron injection and I was placed on the drug Aberaterone Acetate. Then I was scheduled for 43 consecutive sessions of Proton therapy.. I responded well with both treatments and did not experience any terrible side effects.

Immediately after my original diagnosis was anxious to get out surfing as the waves were coming in good and conditions were ideal. I never looked back. As far as I was concerned if there was no great pain or side effects then I would treat my condition as just another example of my mortality. It is now over 7 years since my diagnosis. There have been a couple of bumps and turns in the road but nothing debilitating.

I cannot make any claims or philosophize on my approach to my health but I don’t dwell on it as every day or month or year has been a bonus as you can never predict or anticipate when you will die. Every day you dwell on your condition is a day lost and that day could have been the best day of your life.

I hope that helps.

@rcotton9
May Lord Jesus Christ bless you with many healthy and peaceful years
God bless you

I had 34 fractions of proton in 2022, absolutely no meaningful side effects. 12 core biopsy showed 3-cores cancerous G6, G7, G8. PSMA/PET march 2025, showed no avid tracer in prostate. RO considered prostate “cold”. Cancer destroyed. Just my experience.

@dderiso I just lost my 4th and final appeal - determined by an outside board. Going to inquire about cash pay options; there are some discounts/programs potentially available for those without coverage. ChatGPT says $30-50k without discounts is average price for 26 sessions. I’m going to ask about it next week.

@4rs
I read your posts. Really disapointed with your insurance not covering Proton Radiation. I assume by your mentioning of your insurance you are not on Medicare. Medicare does cover Proton radiation.

Have you reached out to major medical institutions about getting treatment that insurance does not cover? I know UFHPTI has a program for those who do not have insurance or insurance does not cover for additional finanical help. I also donate to Mayo several times a year for the Good Samartian Fund. That fund is to help those who do not have insurance or their insurance does not cover medical tests and treatments available.

There is not difference between succss rates for Photon and Proton radiation. They are identical. The major difference is that Photon radiation enters body and exit body where Proton stops at the point radiation is needed and does not proceed through body. Thus the possibility (many studies being done now) of less radiation damage and secondary cancers caused from radiation damage to health organs and tissue that proton radiation can avoid.

They have improved Photon radiation treatments in the last few years. They (SBRT) can steer the radiation beam (come from many directions) to try and avoid other ograns and tissue. This is a great improvement but does not stop the issue with photon continuing out through body where proton does not.

I had 30 rounds of proton radiation at UFHPTI. My posts comes from consultation at Mayo Jacksonville who could only offer Photon SBRT. My consultation with UFHPTI who offers 20 years experience of doing proton radiation where prostate cancer is the major treatment there.

My Mayo PCP and I met to discuss the pros and cons of each treatment and we decided as a team that the proton radiation treatment at UFHPTI was the best for me.

@rcotton9 it seems you have an attitude that might be as effective as the other treatments. I suggest you stay the course and help others along the way as you seem to be doing…

@4rs I am curious what your reason is for the preference of proton therapy? Any chance of mentioning what your insurance carrier is?

My pet scan is tomorrow, oncologist is the next day (at Mayo Rochester). So far everything points to no spread outside the prostate. I have multiple prior surgeries that make surgical options higher risk, so I'm leaning toward radiation therapy but worried insurance won't cover proton therapy.

I'm still in the self-research stage as I haven't seen the oncologist yet. I understand that the accuracy of the proton beam appears to make it the best option if cancer is contained, but I would think the lack of focus of photon radiation could be a benefit to catch any nearby cancer if it has started to spread out of the prostate. But then again, I'm also worried that proton won't be approved by my insurance so may just be trying to rationalize accepting a different treatment.

@karrows proton preferred in my case to minimize “collateral damage” to healthy tissue. As an example, my pelvic lymph nodes are positive and need radiated. With the bowel being in such close proximity, proton would presumably result in less damage to the bowel versus photon. While both options are effective when it comes to neutralizing cancer cells, proton therapy is more targeted and doesn’t pass all the way through the body like photon therapy. I initially had the same thought as you regarding a potential “benefit” with photon therapy to catch any nearby “floaters,” but was told the amount of radiation that hits surrounding tissue is enough to damage the healthy tissue, but not enough to “kill” any floaters. Thus, no real benefit; only more collateral damage. That being said, photon has come a long way and the odds for long-term damage are much better than several years ago. I hope PET scan brings good news for you.