Starting Proton Treatments for Prostate Cancer: Any experiences?

I'm 71 and have traditional Medicare. When I was diagnosed with Prostate Cancer a year ago, it started with a marked increase of PSA from the 3s to the 4s in one year. I had a 3T MRI in Ft. Myers which read as high likelihood of cancer. So off to the Moffitt Cancer Center in Tampa, who performed the rest of my testing, which included biopsy, PSMA/PET scan and Decipher testing. Biopsy confirmed Gleason 7 and PSMA/PET showed cancer confined to the prostate. Decipher read low risk. So I researched all options (photon therapies, brachytherapy, TULSA, Laser, surgery and proton therapy) and chose proton therapy at UFHPTI in Jacksonville. My assigned doctor was Bill Mendenhall, whom I highly recommend along with UFHPTI. I finished 29 sessions in mid April. My PSA is dropping and now below 2 from a high of 7.5 when I started treatment in March. Doctor says my PSA should keep dropping over the next couple of years. I have no complications and am testing PSA every 3 months now. If my PSA ever increases,alarmingly, I would look at starting with another PSMA/PET scan and go from there. Medicare has paid for everything on schedule, including numerous 2nd opinions and doctor visits for the various treatment options.

I commented about proton several days ago. In quick summary: PSA: 6.47 T1 Gleason 3+3. Proton radiation at Loma Linda in 2010; 2.5 months each weekday morning. Nothing or below 1.0 (usually, .06 to.09) for about 6 years. PSA has risen to 4.29. Early July MRI at Gainsville VA. (I have TriCare for Life and M-Care). MRI of the prostate measured the likelihood of cancer one through 5, based on cell configuration. Mine came back at five (5), which indicates a possible return. But, my original scan at Loma Linda (either MRI or PET scan) showed "calcification" around the prostate gland. This can impact the diagnosis. The VA called yesterday to schedule at urology visit.

I did register with Mayo last year when the PSA reached 4.0. I copied down the POC/name you mentioned and will perhaps go to Mayo for a visit. Mine originally was very slow growing, in fact, during the "finger wave" while at the Infantry School, the doctor noted on my exam a "harding" on the right lobe of the prostate. That was in 1989, some 20 years before I had proton radiation.

I'm going to second the Mayo Clinic in Jacksonville recommendation. While I was getting Proton Therapy at UFHPTI, my wife received excellent care for some required imaging and biopsy work. This was something they graciously were able to schedule for her in the few weeks we were staying in Jacksonville in Mar-Apr of this year. My wife has nothing but high praise for her care there. One morning we had an early appointment and I took a photo of the waiting room because nobody was there except my wife and I couldn't believe how nice it was.

@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.

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!

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.

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

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.

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.

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.