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

I'm considering proton radiation maybe sometime this fall, I'm 72 and was diagnosed a year and a half ago January 2024 with Gleason 4+3=7 but so far have done nothing but just monitor my PSA which recently went down from 6.44 to 5.29 I am on a zero sugar diet, I feel great, no symptoms whatsoever from the cancer. Surgery was ruled out for several reasons, so Mayo was recommending radiation. I am just not mentally prepared to deal with any side effects. I am also looking at Tulsa Pro, does that require SpaceOar? I am hoping that they continue to improve the treatment options, and eventually come up with one that has zero side effects. Maybe I'm just trying to run out the clock

Once you have an intermediate unfavorable Gleason score, that’s more of a driver than a fluctuating PSA (unless the PSA is very high).

Other factors to consider in your decision:
> With your 7(4+3), does your biopsy report indicate the %4s and %3s? If the %4s is very high, continued waiting is suboptimal.
> In the MRI or biopsy reports, were the words cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma mentioned? (If not, that’s good. Some of those terms are indicators of more advanced disease.)
> Whst were the results from your Biomarker (genomic) & Genetic (germline) tests?
> What were the results from your PSMA PET scan?

With all that information, you’ll be more fully equipped to make a treatment decision…. hopefully, soon.

Prostate cancer is usually asymptomatic so, your “no symptoms whatsoever from the cancer” is good, but typical.

SpaceOAR is used to protect the rectum from excess radiation. TULSA-PRO uses ultrasound energy to heat and destroy prostate tissue,

At 65y, I had 28 sessions of proton radiation (during April-May 2021) and 6 months of ADT (Eligard) for a 4+3=7. Treatments were relatively uneventful and I’ve had no lingering negative after-effects. (With all the data I read, proton’s Bragg-Peak characteristic was persuasive.) I have no complaints regarding my proton radiation treatments.

With proton radiation, instead of looking at the “possible” side-effects, look at the “likely” side-effects. You’ll find that (if you take the available precautions) there are few and the risk is low.

Good luck!

@ranger44
I am 78. I had my proton radiation treatments when 76.

Per my urologist and R/O a gleason score total of 7 needs treatment of some kind. Of course you can always chose active surveillance but your Gleason score is telling you something is wrong.

Did your urologist offer Decipher? It can more accurately define your biopsies as low risk, intermediate risk, or high risk. This really helps your urologist and R/O to determine the treatment for you.

You mentioned Mayo. Which Mayo is that. I go to Mayo Jacksonville.

The side affects when you are actually receiving radiation is zero. The side affects come from damage to your prostate, seminal vessels, and urinary vessel because are getting the radiation also. Along with this because margins are usually done you can have some side affects on the bladder and colon.

Most of the time the norm is minor side affects and easily tolerated but we are all different and some do have significant side affects.

Not know the Decipher score of your risk level for me would rule out AS but that is me. There are very new in clinical trials of new protein type treatments that attack the prostate cancer cells only and leave healthy cells alone.

Maybe a monitor or other poster can inform you or clinical trials being done of these new treatments or mayb ones that have just been approved.

I had minor side affects from 30 rounds of proton radiation. I was 3+4-7 with a Decipher score that came back low risk. I got radiation only. Getting hormone treatments is anohter whole subject and those who have had it would be better to comment on than me.

I just got my 2 year post proton radiation PSA test. Is was 0.10
3 months ago it was 0.22
My original PSA was 3.75 which is considered under normal limits for PSA.

However because I have an excellent PCP at Mayo did not like my continuing rise of PSA and referred me to urologist who ordered MRI which prompted biopisies which Gleason was 3+4=7.

So a under normal PSA does not gurantee no cancer. And a PSA above norm level indicate cancer. Per my PCP and R/O it is the continuing rise of PSA that indicates a concern.

I finished Mayo proton radiation therapy 3 weeks ago. I have been on a busy driving adventure for two weeks… long days, long drives, stress, lots of equipment to tote in and ut of car.

I couldn’t do that f side effects were a big deal. I was more tired and a weaker than normal… that’s to be expected. It has mostly gone away. Also some bladder irritation, also expected.

Proton therapy, because of the Bragg Peak effect, has less impact on tissue that is not the target than X-ray radiation p, which is why I chose it. I’ve studied the physics of it and understand the math.

I recommend it. You have no symptoms during each treatment session, which is short and not unpleasant.

Reference: Proton Radiation
2010 at Loma Linda Hospital for 2.5 months of proton radiation therapy. Gleason 3+3 with localized slow-growth prostate cancer. As I understand it, the number of sessions may depend on the size of the cancer, its location and improvements in targeting the cancerous site.
Proton radiation was initially developed for children with brain cancer. The reason for this option and the investment to build a proton radiation system was that proton was essentially the only option. That was 15 years ago. Most mornings, those of us awaiting to be called had modest conversations. At least 75% or more of the patients I spoke to in the morning were physicians. This reinforced my solo decision to undergo proton radiation. Now, come 2025, PSA began to rise. it appears there may be either a recurrence or "cancer" within the prostate, now subject to proton radiation therapy in 2010. I have had an MRI and PET scan and no real "evidence" of prostate cancer. But, PSA continues to rise. Absolutely no issues physically- everything normal and "operational". Decided just to watch PSA levels and any indication of physical issues. Although, I have TriCare For Life, I have used the VA for treatment. However, at some point, I may seek additional recommendations or perspectives from Mayo in JAX. I am about two (2) hours from Mayo/JAX. For those attempting to decide what options to consider, I would absolutely and without reservation recommend proton radiation. Do your homework and seek out varied comments, recommendations and perspectives to assure your decision is the best option for your prostate issue. RH/Leesburg

Did you have proton treatment at Mayo in Jacksonville ?

@buzzliteyear
Regretfully no. They (Mayo Jacksonville) is building a new cancer center that will have proton radiation treatments and will open sometime in 2026.

I was diagnosed with prostate cancer and per my PCP he wanted me to get a second opinion and I did that at UFHPTI. From my PCP and what I learned from the R/O at Mayo, and R/O at UFHPTI I wanted to get proton radiation.

The success rate of treating the prostate cancer are the same but proton radiation is much more highly controlled with proton radiation and does not exit the body beyond prostate or the area being treated. It also can enter the body at a lower dose, releases its full dose at precise location R/O and physics department have determined and then stops. Photo enters full force, radiation of the treatment area, and continues through and out the body.

I had my urologist exam, my MRI, my biopsies, and my first R/O consultation done at Mayo. I had a second opinion done at UFHPTI by having my medical records send to them and then a second opinion/consultation.

@westernflyer
On reading your post you mentioned Mayo Jacksonville. Mayo Jacksonville does not have proton radiation treatments for prostate cancer. They are building a new center (cancer) that will open sometime in 2026. That new center will have proton radiation.

May I suggest if you are looking for a second consultation of exceptional treatment centers to contact UFHPTI (University of Florida Heatlh Proton Institute). It was built and has been doing treatments since 2006. 5 upgraded to latest technology gantries and ulta modern facility.

You can type in the name and go on their web site for information. I can also send the information to you if you like on private message. You already know about photon and proton radiation but UFHPTI offers a information packet free with tons of research, comlete informatino on their treatments, and two books (one is Walsh) free in packet.

They are all state employees so salaried. No pressure to come there. I was just there on Tuesday to see my R/O for my two year follow up.

Mayo Jacksonville offers SBRT for prostate radiation treatment and their present center and R/Os are excellent just don't have proton just photon until new center opens in 2026.

Hi jc76, I find your posts helpful. Recently I heard that the angle of the proton entry may cause some extra radiation at the hips. Have you heard of anything like this. My 1st RO said something like this but I couldn’t follow it well.