Proton Beam Therapy Experience - what was your take?

Proton radiation 2010 at Loma Linda Hospital, Loma Linda, California; PSA: 6.47. Diagnosis: Slow growth prostate cancer localized. Two and half months weekdays (2.5 months) or 50 proton treatments lasting just minutes or less.
Summary: Proton radiation therapy at least at Loma Linda which was one of the first to use this technology back in 1994 was initially for children with brain cancer. Targeted radiation with proton results in no damage to the outlying tissue. The hospital has treated prostate cancer and has treated thousands of patients.
Issues: Has the cancer spread to the entire prostate or is it localized? Has this question been validated by PET scan an MRI or both? I was told that the 50 treatments with low-dose radiation cause no damage to the prostate. Low-dose radiation for a longer period of time logically seems the best option. But, I see comments of others who have undertaken proton radiation with only 2o or 25 proton treatments. Perhaps the technology or other things have changed. It is all about access to the technology and the cost. My 2.5 months with 50 treatments cost $3300 per day per treatment. Not counting housing, travel, etc. So, affordability is a large metric in this decision.
Question: What was the impact to daily life during treatment? I played racquetball most afternoons at the base gym. I stayed at March Air Force base quarters the entire time. RH/Florida

With only 46 active proton centers in the U.S. (https://www.proton-therapy.org/map/), much has to do with access.

Also, with recent studies (COMPPARE and and PARTIQoL) showing similar tumor control rates and patient-reported quality of life outcomes, insurance companies sometimes have an impact on that decision (given the cost of proton over photon).

Ultimately, it was proton’s Bragg-Peak characteristics that persuaded me (and the fact that Medicare fully covered it, and that there was a top proton center just a 40-minute drive from my home helped my decision immensely).

During April-May 2021, I had 28 fractions of proton radiation (2.5 Grays each session), with SpaceOAR Vue, and 6 months of Eligard (for a localized Gleason 4+3=7, Grade 3).

Short-term —> I only had 1 day of adverse side-effects during my 28 sessions of proton beam radiation treatments (during April-May 2021). On the 3rd day of treatment, I had urinary issues. My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. Everything cleared up by the next day; I haven’t had any issues since.

Long-term —> My “recovery” from radiation treatments since then has been uneventful.

My experience? —> It was a walk in a park.

Dr. Rossi provides good information about proton in his portion of this 2023 Mid-Year PCRI presentation: https://www.youtube.com/live/WTqPnSRYtW4
—> Starting at timestamp 3:38:45.

Thank you for the feedback. I am having a PETscan and waiting on decipher results and a generic test. It’s stage 2 so both sides. I am concerned with the potential higher rate of impotence and incontinence that often resolves, is a non issue or is something one lives with. I currently have no symptoms. Radiation (Photon / Proton) vs a radical Prostatectomy seem to have similar success rates in terms of the underlying cancer. But everyone’s situation is different including age, localized or spread outside prostate, insurance, access, generics, risk tolerance, main object get it out and save radiation in pocket for later or do non invasive treatments and rolls those dice. I appreciate everyone’s input. It’s a hard decision.

@brianjarvis thank you for your feedback. I am doing a PERScan, waiting on results of decipher test and genetic test. Meeting with an RO. Urologist is a robotic surgeon so his bias is RP surgery with radiation as a backup for any reoccurrence. I have no symptoms. So the side effects are a factor for me. I’m taking a little time to gather data and opinions based on all my unique scores, tests, pathology reports etc. I just didn’t see many comments on Proton on this message board as most men do RP or radiation combines with hormone therapy. And there are many many successful outcomes for both. I pray you stab heat and thank you for your story.

@westernflyer thank you for your input it helps. Mine is on both sides. Doing a PETscan and waiting on Decipher and genetic test. Meeting with an RO. It’s a very challenging time to make decisions that are life altering. I’m glad you are healthy and had a good experience. Thanks.

@bdouglas67 Yes, PSMA PET scan, biomarker (genomic), and genetic (germline) tests are all necessary before making a treatment decision.

As for urologist’s often perceived bias to surgery and RO’s often perceived bias to radiation, I view it more as “if all you have is a hammer, everything looks like a nail.”

Note that with radiation, if there is local recurrence after initial radiation, choice of salvage treatment would depend on the nature of the recurrence; with modern treatments there are many backup options - focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation in some cases.

So, with success rates comparing surgery with radiation being statistically equivalent no matter what treatment chosen (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122), it all comes down to side-effects and quality-of-life (or as that paper concludes, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”).

RP is often done with the assumption that if it’s taken out, then the cancer is gone. But as the data clearly show, recurrence rates company RP to RT are statistically equivalent (and RP often has to do RT anyway, so why do both?). With the success of modern radiation in breaking DNA strands (see attached graphic), the cancer cells die when they can’t divide.

Note that proton is radiation therapy (it’s a heavy particle with wavelike characteristics); and proton is combined with hormone therapy just as with photon.

However, there are so far fewer proton centers than there are photon centers, that explains why you don’t see many comments on Proton. Plus, in practice proton is quite successful with few serious side-effects (due to the Bragg-Peak) so, you won’t find many proton patients hanging out here…..

@brianjarvis thanks. Very interesting article from New England Journal of Medicine. And it makes sense. If you have no issues or reoccurrence then unless you are willing to help others especially those that are just starting this journey then probably not hanging out in a support group. I really do appreciate your help.

@bdouglas67
I had same Gleason Score as you. My Decipher came back low risk thus did not have to do hormone treatments. My PSMA was negative.

I had 30 rounds of proton radiation at UFHPTI. I am a Mayo Jacksonville patient but at the time I had PC they could only offer photon radiation SBRT.

You are going to read a lot about one not better than other and no differences, etc. There is a big difference. Photon radiation enters body full force, continues to where it is aimed and continues through body. Proton raidation can enter body lower dose, release it full dose at specific spot and NOT continue past that.

The benefit that most urologist, and R/Os is that proton can possible limit secondary damages to other ograns and tissues that photon will hit because does not stop.

Can I suggest contacting University of Florida Health Proton Radiation Insitute (UFHPTI). It has been doing proton radiation for 20 years and has the most updated equipment. What is good about UFHPTI regardless if you chose them they will send you an information packet free. It containes tons of research information, two books on prostate cancer (one is Walsh), a through information on their program and treatments with NO pressure to use them.

They are a State of Florida Facility and are all salaried employees and specialists. Why did I chose UFHPTI for my proton treatment? My Mayo PCP did a lot of research there during his medical school and internship. He was totally familiar with the institute. My PCP discussed with me the pros and cons of both photon and proton radiation and we decided as a team to go with proton radiation.

The sucess rates of both types of radiation are equal. It is the possiblity of reduce secondary radiation damage to surrounding organs and tissues that is the difference. Now if proton is superior in lessoning secondary radiation damage why does Mayo Jacksonville not have it. They (Mayo) are building a brand new cancer center and will have proton radiation there. So you can see would do the tremendous cost if did not feel justification.

Mayo Jacksonville cancer center will open in 2026. Right now Mayo refers cases like eye cancer, brain cancers, and cancers in children (much likely to suffer from secondary cancer and damage from radiation because of life span) to UFHPTI for proton radiation treatment.

So do your research asked questions of your doctors, specialist, I would higly suggest contacing UFHPTI and asking for their proton radiation information packet (Free) as is an excellent source or research and information on both forms of radiation treatments and existing research on them.

A very large percentage of doctors advise RP or radiation because they don't know anything else. There are other treatments, Tulsa pro for example which was greatly improved on mid 2023 and is now a very good option. If I can do Tulsa so can you, you just have to take the local docs opinions and move on to a doctor that will give you more than the standard two options which should be your last choices unless things are spread or metastatic or outside prostate in any way. Options should be stay on AS as long as one can, then Tulsa Pro (maybe hifu in a few cases, and maybe a new one called vanquish), then as last resorts are RP or radiation. Since Tulsa Pro is in a new form since 2023 not many places have it, so most likely you have to travel somewhere, that is not that big a deal.
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Tulsa
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
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Here is my post on Tulsa Pro - search on here many others are having it.
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/

@brianjarvis I finished my 5 sessions of Proton Therapy on September 19th ‘25. Almost 2 months ago. Almost all the side effects are gone. The few, like urgency, start & stop when I wake up at night, are no different than before. The start/stop is really not much of a hassle. Since my first visit isn’t until late December, we’ll see what has happened. I would recommend Proton of HDR brachytherapy would be my options going through this again.