Proton Therapy: any long term side effects? Any regrets?

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).

We started the Eligard just 5 days prior to starting proton after reading much literature such as this (which shows that backloading ADT may have better outcomes than frontloading ADT by many weeks/months, which is how it is usually given): http://www.medscape.com/viewarticle/940049

@tango32652
You are on MCC. Mayo Community Connect.

Hello. I'm scheduled for a MRI fusion biopsy on August 5 and trying to prepare for treatment options. I lean toward proton therapy. At the moment the nearest place to me is Orlando, FL How does proton therapy compared to cyberknife? Thanks.

Did you get the free packet from UFHPTI? It has a list of hundreds of proton therapy ambassadors whom you can contact and ask them about their experience with Proton Therapy. I finished 29 treatments in Jacksonville on April 19 and am doing just fine. Everything still works as it did prior to treatment. But with any radiation therapy, only time will tell how accurate the treatment was and if there is any residual damage. My research convinced me Proton Therapy was the best choice. So far my PSA has dropped from 7 to below 2. I can't speak highly enough about my experience at UFHPTI.

Cyberknife is one type of SBRT; proton therapy can be done as SBRT or not. Are you trying to compare Cyberknife SBRT to Proton SBRT or Cyberknife SBRT to regular proton?

Received 5 dose treatment of Proton SBRT at Mayo Rochester in January 2023. The entire process was less painful than the biopsy, which itself was uncomfortable but very painful. I have written rather long descriptions of the process in previous threads on this site. Bottom line, I have had no lasting issues post-treatment and my PSA dropped from 10.5 to .76 as of May 2024. It can take 2 years for PSA to reach its nadir.

For a full process description, check out other threads.

Best wishes, and I believe you have made a wise choice with Proton Beam SBRT. Mayo Rochester is highly recommended.

thanks all for your input. I'm so new at this. I didn't realize there was a difference between SBRT proton and proton without SBRT. I was on the phone to UF in Jax last week but will have to ask for the booklet mentioned (UFHPTI). Thanks all.

Just go to their website, https://www.floridaproton.org/about-us/contact-us and fill out that form. You should get a packet via Fedex in a couple of days. UFHPTI wasn't doing SBRT Proton when I was there. My understanding is that they tested it briefly and apparently had some measured increase in urinary complications so they opted out of SBRT for the time being. They did use the latest pencil beam proton therapy, though. My wife and I (and the two dogs) stayed at Third & Main, about a 5 minute drive from the treatment center for the roughly 6 week treatment. If you are a Veteran getting VA medical benefits, you might inquire about how at least one veteran I know of was able to get the VA to pay for his treatment, travel, and lodging expenses at UFHPTI. That happened for a fellow patient who was there at the same time as I was. I have traditional Medicare and they covered the cost with no issues.

@kmat
Can't comment on cybernife as never was proposed by either of the opinions I got for treatments.

You say closest proton is Orlando to you. Do you live south of Orlando or north of it. If you live north of it there is an outstanding proton treatment facility at University of Florida Health Proton Therapy Insititute is Jacksonville. This is where I had my proton radiation done as Mayo Jacksonville only offered Photon.

There are other proton radiation institutions in the Jacksonville area also. If interested you can get a information packet from them. They have been doing proton radiation treatments there since 2006 and I think have around 40-50 countries and every state patients there. It is a ultra mondern, up to day equipment and outstanding doctors and technicians.