Starting Proton Treatments for Prostate Cancer: Any experiences?

I had 20 treatments 5 years ago. Grateful that I have been cancer free ever since. Some bleeding issues at first but then those issues were resolved.
Very grateful and pleased with the care received by Mayo!
Best of luck and God bless you!

@desertrat
Similar Gleason Score and PSA. Mine was 3+4=& and my PSA was 3.75 at time of treatments.

I had 30 rounds of proton radiation done at UFHPTI.

Has your urologist or R/O mentioned Decipher test? Have they mentioned PSMA? The Decipher will define your risk level more accurately of your prostate cancer. PSMA will help define if cancer has spread outside prostate. All of these test are comvered by Medicare if you are on it.

I did not have hormone treatments either. It was originally part of my treatment plan but my Mayo R/O suggested Decipher test and it came back low risk versus original from Gleason as intermediate. That changed to low risk changed my treatment plan from radiation and hormone to radiation only.

Mayo Jacksonville could only offer photon radiation so got second opinion at UFHPTI which does proton. Elected to get 30 rounds of proton radiation versus photon to do what every possible to limit collateral radiation damage to other tissues and organs.

My R/O at UFHPTI was outstanding and I was given so much information about prostate cancer, what my treatments would be, side affects, pros and cons, that I was totally informed about what was going to happen and what to expect prior, during and after treatments.

How are you now, @gankster ? I had SBRT photon + Orgovyx April 9-21 this year, and my experience isn't bad compared to yours (proton only treatment). But "still under observation" -- someone else started experiencing hot flashes after two months on Orgovyx, so I am on "wait & see." I am wondering if "proton only" (no ADT) absolutely worked for you. My oncologist we'll see if I can stop Orgovyx after 8 or 12 months; I prefer sooner, maybe 6?

Thanks for the comeback! I have TriCare for Life as a retired military. I use the VA as "my origingal source" for common bi-yearly blood tests, etc. I did have the MRI at the Gainsville VA. Keep in mind, many doctors work the VA and the University of Florida health care system.

It is prudent to obtain as many "validation" of your particular issue as possible. Doctors often make diagnosis mistakes..and in some cases, it is fatal.

Since you mentioned VA as primary care, I should add that while I was getting treatment at UFHPTI, there was testimony at a group men's meeting from a veteran on VA medical care who was able to get the VA to approve his treatment there. They were paying travel and lodging too. UFHPTI's financial side of things would know about how this was done, but I think it set a precedent.

Hello,
I completed 5 Proton treatments in November 2023 at Mayo Clinic Rochester. One every other day (Mon, Wed, Fri. Then Tue, Thu., and done) My original Gleason score was 3+4=7
I have not had any side effects, so far. Blood test show PSA less than 0.01
I feel fine and have been able to remain active throughout. When I talk to friends who did up to 44 treatments, I am happy with the choice I made. Remembering when I Googled prostate cancer, 2 choices came up, Mayo Rochester or Northwestern Chicago.

Thanks for the kind reply and comments. As noted, I had proton radiation therapy at Loma Linda Hospital (actually Loma Linda Children's Hospital as 2010). Near zero PSA for almost 6 years, PSA began to rise to currently 4.29. Had an MRI (may of 2024) and the scan indicated a possible return. I have been using the past two years the VA as primary care. I have TriCare for Life and M-Care (as retired Army), so I can go anywhere.

18 months ago when my PSA seemed to increase, I did contact Mayo in Jacksonville and now have a patient number and medical background on file. An appointment with the urologist at the VA is pending. Will see what they say for "first opinion". I have Dr. Mendenhall's contact info. Thanks for your comments. RH/Leesburg, Fl

Kmat: both treatments were available to me. I researched both and spoke with 5 radiation Oncologists. I wanted real time treatment with a built in mri not fused images. The mridian had that, with 2 mm margins to minimize healthy tissue exposure which affects side effects. The margins are usually 3-5 mm with proton and other non built in mri machines, including proton.

Dr Christopherson was great. She was trained at md Andersen. I would make the same decision again. I had 5 hypo fractional treatments and finished in February of 2023.

bens1...did you have proton treatments at Orlando Health Center? I live in St Pete, FL, and of course Orlando is much closer to me than Jax. Any suggestions very welcome!

@5galloncan
I see you were at UFHPTI for your proton radiation. I think I mentioned that is where I had my proton radiation done for prostrate cancer. I had 30 rounds of proton May into July 2023. I had the Blue Team and Mendenhall as my R/O. Great care and teams.

I like the fact at Mayo that when you have labs and tests done in morning they are available to your doctor later in same day. My only complaint would be the ER (way to small) and parking (not enough of especially handicapped

When I first started going to Mayo Jacksonville in 2006 they only had the Davis building. Did not even have a hospital back then. Thus have been a patient and watch the enormous growth of the instiution.

My doctors are outstanding and would recommend Mayo Jacksonville to anyone close or even those coming for second opinions or wanting quality of tests and treatments they can't get elsewhere.