Starting Proton Treatments for Prostate Cancer: Any experiences?

Not to derail the topic of this discussion (proton treatment), you can hop over to a discussion related to ADT and hot flashes. Check these out:
https://connect.mayoclinic.org/group/prostate-cancer/?search=hot+flashes&index=discussions

Apologize! I thought I was on PC forum.

Did 40 times radiation with last 5 rapid arch Cancer free for 4 years then had to have L2 radiated Put on Enzalutamide for a year but PSA went up Now on Radium 223

Still on Zolodex and Xgeva Lots of calcium

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.

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.

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 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

@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.

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

@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.