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

Plenty of proton therapy discussions here:

Oskarpr: I had narrowed down my research to either the Mridian machine or Proton Therapy from Meva.

Many success stories with Proton, but I felt that the overall experience and safety because of the built-in MRI was better with the Mridian or any machine where you can see what’s happening in real time, the narrow beam and Non exit attributes of Proton Therapy beams notwithstanding.

if real time Mri was not available, I would have done the Proton and if it was today, and that was the case, I would find a doctor that would do the bio-protect spacer as I understand that provides more room to separate the rectum from the prostate. I had three Radiation oncologists raise a concern about rectum bleeding with Proton Therapy. All three had extensive Proton Therapy experience. It is something worth discussing with your doctor.

I had 28 sessions of proton radiation treatments during April-May 2021. 65y; Gleason 7(4+3); PSA 7.976; localized. Had SpaceOAR Vue injected; and 6 months (two 3-month injections) of Eligard. Proton beam’s inherent Bragg-Peak characteristic was a major consideration. The only significant side-effect that I had occurred on the 3rd day of treatment when I had a slight urinary issue. My RO told me that with some men there’s an inflammatory response to radiation and if that’s near the urethra can cause the issues that I was experiencing. He recommended that I double-up on Tamsulosin for the remainder of the sessions; that took care of it. I’ve had no other significant side-effects since. It's as if I just walked in a door, got treated (28x), and walked out the door….. After 28 full bladder/empty bowel proton beam radiation treatments later, it’s back to the way it was before the prostate cancer journey started. Here we are now, 3 years later; everything is good, bloodwork being done every 4 months, PSA varies between 0.35 ng/mL-0.55 ng/mL (most recently in May, it was 0.47), and have had no lingering adverse after-effects. Hopefully, these positive results will continue. No regrets.
(They regularly use proton radiation in pediatric centers to successfully treat kids with brain tumors, while minimizing radiation to nearby healthy brain tissue. The technology with proton is clearly there to successfully treat tumors in a walnut-size gland and avoid radiation to nearby otherwise healthy tissues and organs.)

Ditto to Brian, my numbers were the similar five years ago. 43treatments at mayo PHX (standard protocol then). I opted for the spaceOAR. My PSA is now 0.1. no side effects. Couldn’t be more pleased with the outcome or the clinic.

2010 proton radiation at Loma Linda Hospital in Loma Linda, California. PSA; 6.47; Gleason 3 plus 3. Slow-growth cancer localized in one area. Spent 2.5 months with morning radiation just a few moments after set up. The procedure has changed somewhat from what I understand. No side effects...I played racquetball each day in the afternoons. Keep in mind, with the extended length in treatment time, one must have accommodation and perhaps a vehicle. In my case, I was residing in Europe working contract in Africa post-military retirement. The total cost was (at that time) about $100K not including vehicle rental or accommodation. TriCare For Life paid the entire bill. Proton radiation was originally designed for brain cancer treatment at Loma Linda (Children's) Hospital. Proton radiation for prostate cancer was an "offshoot" of the benefits of that procedure. I have read many personal circumstances on this informative Mayo website and it appears many men and many doctors as well know very little about proton radiation therapy. Keep in mind, a hospital like Loma Linda had to build a cyclotron, the size of the boundaries of a football field cost tens of millions of dollars. Always seek second opinions.

@oskarpr
You have come to the right place for those who have had proton radiation treatments. I had 30 rounds of pencil beam proton radiation at UFHPTI. I am a patient as Mayo Jacksonville but at this time they do not offer proton radiation just photon.

I did not have hormone treatments. If you are considering radiation treatments first you need to know your PSA levels, level of your cancer, and get some additional test (suggestion). If you have prostrate cancer some of the test that can really help you decide which treatment are the PSMA, bone scan, and Dechipher. With those tests your urologist, and R/O can really fine tune the BEST treatment for you. If you want to go even futher get a second opinon which you see is quite common at MCC.

For my experience. I had some slight fatique about 3 weeks in. Was told most likely woud as body is fighting the radiation damage. I had more frequent urnination and urgency. I also had the normal sun burn type burn on each side of hip where protron radiation goes in.

Now long term. It tookd a couple of months for drippling, urgency, on urnination to improve but it did. The fatique went away after treatments stopped. The radiation burns on side of hips took several months to go away.
If you are not having hormone treatments your treatments with proton radiation is going to have some side affects both short and long term but the norm is that are mild to most but not all patients. Those that get the hormone treatments is another whole story with some having some real extreme side affects but soem also not severe at all.
Good luck. Coming to MCC is a great start. I wish I had known about it when I started my treatments. I did not hear about it until I started treatments and would have been a much more informed patient if I had known about MCC.

What is MCC?

I had extensive Proton Therapy for my grade 10 cancer. I did not experience rectal bleeding I was treated at Mayo Scottsdale.

Did you have Eligrad after proton therapy , how soon after treatment, why?

I suspect he means Mayo Clinic Connect, this forum.