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Starting Proton Treatments for Prostate Cancer: Any experiences?

Posted by desertrat @desertrat, Feb 5, 2022

I am 69, just been diagnosed with prostate cancer, Gleason score of 3 + 4, PSA is 4.2. I have opted to do 28 treatments of proton radiation only. I would appreciate hearing from others who have been through this and how it worked out for you. Thanks in advance!

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4rs | @4rs | Nov 4, 2025
In reply to @jc76 "@4rs I read your posts. Really disapointed with your insurance not covering Proton Radiation. I assume..." + (show)
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@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.

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@jc76 thanks for the reply. I’m working with the Proton Center in NYC and requested information about cost and payment options for non-covered patients after reading your post. Waiting to hear back. Tentatively scheduled for photon mapping session later this month with treatment to begin in December. My oncologist did not want to wait to roll the dice on resubmitting the claim under my wife’s insurance in January given the expected time for prior approval/potential appeals with ultimately no guarantee of coverage.

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dderiso | @dderiso | Nov 10, 2025
In reply to @karrows "@4rs I am curious what your reason is for the preference of proton therapy? Any chance..." + (show)
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@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.

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@karrows I am 71 and on Medicare but have an Advantage Plan with Anthem and they make the decision on coverage. I have been denied all 4 approaches. Anthem is discontinuing their advantage program at the end of this year, which they should; it has been a real disappointment. I am going with Aetna and they have a great history over all and in approving proton therapy. I will still need pre-approval but very optimistic we will start 28 treatments in early January. I hope everything is going in the right direction for you.

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Colleen Young, Connect Director | @colleenyoung | Nov 16, 2025
In reply to @karrows "@4rs I am curious what your reason is for the preference of proton therapy? Any chance..." + (show)
Profile picture for karrows @karrows

@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.

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@karrows, how are you doing? How is the decision making going? Have you decided the course of treatment you will be getting with your team at Mayo?

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karrows | @karrows | Feb 16 11:38am

I did go with proton SBRT at Rochester Mayo in late Jan. No insurance problems. Pet scan was as clean as could be, everything was fully contained. Just returned to work today.

I was surprised that before even asking, the Dr was up front stating that the studies and data do not show that proton is any better than normal radiation, but they still believe in it's benefit in theory that less radiation to nearby areas should be better than traditional radiation. They recommended SBRT Proton, but left it open to my choice on the type and length or treatment, stating short course or long course, proton or photon, all show equal outcomes in studies.

Treatment was worse than I expected. 90 minutes after my first treatment, I had some pain and nausea. Lots of fatigue through treatment, lots of urinary tract pain that meds eventually took care of. Dr said that my side effects were worse than normal, but within the range of nothing to be concerned about. He said everyone reacts different to radiation, and they don't know why.

Even with the worse than normal side effects, it wasn't too bad. Took two weeks off after treatment to recover, and glad I did. Now the long wait for my psa test in 6-months.

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