Starting Proton Treatments for Prostate Cancer: Any experiences?

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.

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 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.

@westernflyer
I have been a patiend of Mayo Jacksonville since 2006. All my health care is there and it is outstanding. However when I got diagnosis of prostrate cancer after biopsy at Mayo I was referred to Radiology/Oncology (R/O).

May R/O does not have proton radiation treatments. They are building a new cancer center that will have proton radiation treatments but is years away. My Primacy Care Physician (PCP) at Mayo wanted me to consider proton radiation in addition to what Mayo R/O was offering which was Photon. That to me is oustanding asking patient to consider all options and encouraging second opinions. After second opinion at UFHPTI I chose proton radiation at UFHPTI. It was outstanding treatment but UFHPTI is only for proton radiation treaments. IF they needs something else done they use Shands hospital.

As I mentioned Mayo clinic is great. Every other Mayo Clinic location has proton radiation. The care I received and continue to receive at Mayo Clinic Jacksonville is superior to any other locations. Some doctors are better that others and you get the occassional bed side manner issues but overall I would recommend Mayo Clinic to anyone for primary care, second opinions. and treatments.

If you live close to Rochester or Phoenix those location do have proton and have very robust treatments, and latest technology and research on prostrate cancer.

PSA: 6.47 Gleason 3+3 2.5 months at Loma Linda Proton Center at the Loma Linda Hospital near Riverside, California in 2010. Post proton treatment with no side effects except some fatigue on Friday (played racquetball most days after 0730 treatment) .

2017 PSA began to rise to now 4.29 (some 14 years after proton radiation). Recent MRI indicates possible return; however, the original scan at Loma Linda indicated calcifications within and around the prostate. This can sometimes lead to issues outside a diagnosis of returning cancer.

I did sign in as a potential patient at Mayo one year ago. I would like to hear your experience, recommendations, or others as to your treatment. I have contacted Loma Linda with my complete file and awaiting some counseling on the options, if any. For example: how to absolutely affirm whether cancer has returned or not. Please include comments about UFHPTI. Thanks very much. Randall.Leesburg, Florida

@desertrat
Almost identical number that I had. 3+4=7 and a PSA of 3.75. Had PSMA, Decipher, and bone scan. All revealed that did not need hormone treatment as confined to prostrate and Decipher came back low risk.

I had 30 rounds of Proton Pencil Beam radiation at UFHPTI which is in Jacksonville Florida. I and my PCP opted to go there for proton radiations as Mayo Jacksonville did not have protron treatments just photon.

I had very little side affects. Had some slight fatique about 3 weeks in but did not stop me from walking, swimming or doing water aerobics. I did have more urgency to urinate and went more often. The at end has a lessor volume of urine flow. All these went slowly away after treatments ended. You will NOT feel anything during treatments so do not worry about that. I would suggest if you did not have the Decipher test to have it. It will more accurately define the risk level of your prostrate cancer risk.

On my follow up 3 month intervals I went from 3.75 to 1.9. Then to .90. then to .60. I have my year after treatment PSA test and follow up Appt. in July. My R/O said that goal was below 1 and that may take a year or two. I was below 1 6 months after treatment. Now the concern is that it remains low and there are no significant increases in PSA.

Good luck and let MCC know about your progress and any questions you have that we can give you our experience on.

I agree. Some of the Proton Therapy centers have a list of proton-friendly urologists in your area. From ProtonBob's website (you might be a member?): https://protonbob.com/sites/protonbob.com/files/memberrecommendeduros2022.pdf

Thank you for your reply. We will contact LomaLinda this week & go with their recommendations. I thoroughly did my research before deciding on Proton and still believe it is the best option for most people. I also agree now that the urologist who pushes surgery is not the person a proton beam patient should see.

I just had Proton Therapy at UFHPTI in Jacksonville. While there, a couple of guys came by for their 9 and 10 year checkups. Both had no issues. You should call Loma Linda and speak to their Urologist/Oncologist about this. The one thing we were cautioned about was to have any urologist contact the Proton Therapy doctors before probing around in rectums or urethras. Also, you've gone 15 years without problems and I doubt the kidney stone is the fault of proton therapy, but I would give Loma Linda a call. They were the pioneers in Proton Therapy.

I had proton beam at Loma Linda 15 years ago. Until March 2024 I too was a cheerleader for having proton beam. My life was wonderful in almost every health manner. In March 2024 my urologist (who is a prostate SURGEON) blasted a large kidney stone and then inserted a stent between the kidney and bladder. Two very uncomfortable weeks later the stent was removed and immediatly followed by an excruciating infection requiring hospitalization. Four weeks later the dr. did a procedure to view the kidney and urethra. Upon returning from the procedure, I was taken by 911 to the hospital with Sepsis and Pseudomonas. At this point a nephroscopy or a urethra bypass using the small intestine was considered OR, he said "live with it." According to the urologist surgeon, proton beam radiation caused these issues and he said there are no other choices for relieving the urgency every hour, Bottom line--I still consider myself an extremely active, healthy 82 year old and would do the proton procedure again as I did 15 years ago.