← Return to Proton Therapy: any long term side effects? Any regrets?

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@michael219

As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior to this we met with both surgeons and radiation oncologist to determine what we felt was the best course of treatment. After numerous consultations and conflicting advice, we/I made the decision that Proton was the way to go vs. photon radiation or surgery. I had 29 Proton sessions, followed by months of ADT (Orgovyx).
Other than some mild fatigue from the radiation and perhaps some more frequent urination, I had no significant side effects. The worst side-effects came from the ADT pills and they were extreme fatigue with its sister, no energy, weight gain, and a loss of libido. The ADT took my testosterone level from 770 down to 15, which did quite a number of my body. I would not hesitate to strongly suggest Proton instead of the older and traditional Photon radiation. The key is locating the right RO and facility, We live in Florida and Mayo Clinic only offered Proton in MN and AZ, Moffitt in Tampa did not offer it as well, with both saying they'd have it in the coming years (large investment).

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Replies to "As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior..."

There is a Proton center in Delray Beach, FL.

South Florida Proton Therapy Institute

Happened to view this today, 6 December. I had 2.5 months of proton radiation therapy at Loma Linda in 2010. PSA: 6.47; Gleason 3 plus 3. Localized slow growth cancer confined to one location. Yes, usually by Friday felt somewhat tired, but normally each lunch I played racquetball at the base gym having stayed at March AFB about 25 miles away from Loma Linda.

No other treatment. But, about 2018, my PSA began to rise now at about 4.0 which is cause for concern and possible recurrence. I had MRI recently and the result was not confirmed. Absolutely no other issues..everything is normal. PSA tests now every six months. Just have to see the velocity and other aspects to determine what next to do, if any. I have TriCare as retired Army, so I can go anywhere. But, if there is a next step, will head north two hours to Mayo. Go luck. RH/Leesburg, Fl