How did you choose between proton or photon radiation?

jc76: I did not have Proton but there are multiple types of Photon machines, some way more accurate than others with less tissue exposure than Proton. Its worth looking at Proton and other "types" of photon.

jc76,
I was diagnosed in Sept 2022 with Gleason 6 intermediate risk PSA 10.5. Looked into RP, Photon and Proton beam as well as Brachytherapy. I also chose proton beam and selected Mayo Clinic Rochester. Last treatment of 5 dose regimen was January 2023. I had only minor side effects such as swollen prostate and SpaceOAR causing urination restriction. That has largely cleared up.

Although there appear to be no long term studies on benefits of Proton versus Photon I chose after reading others on this site and reading extensively. Dr. Walsh's Surviving with Prostate Cancer helped me make my treatment choice.

Best wishes for a full recovery.

I chose proton beam therapy in 2018. At the time, it was explained to me the difference between photon and proton. At the Mayo in Phoenix, one of the resident PhD physicist explained that the proton system was designed so the radiation energy is released exactly at the prostrate based on the speed of the protons for your individual body dimensions. Your individual dimensions are programmed for each session. This causes less damage to tissue as the beam enters the body. They were also using the proton beam for young children with brain tumors, so it would cause the least amount of long term brain tissue damage.
Photon beams start using more energy as it enters the body and goes through the body causing more tissue damage. My understanding is the newer Photon machines can avoid more sensitive tissue and may be much better, but I would check it out.
As a side, when I had my treatment, the SpaceOar was not available, so they used a rectal balloon that was inserted for each treatment and then removed. It was protecting the rectum. After, I had no physical restrictions. We were allowed normal activity. There's a website called the Brotherhood of the Balloon or BOB. It discusses why some men chose proton therapy.

Thanks Waymen. You were lucky as Mayo is outstanding. However only Phoenix and Rochester offer Proton. Jacksonville is building a proton but not ready for several years.

The books I got from UFPTI are outstanding. Most of the studies on Proton and Photon are 5 year studies as you mentioned. And at that they focus on cure rates which are basically the same for low risk and confined to prostrate.

To me something that does not pass through you is better than going through you. And I know those institutions that don't have proton will refer patients to facilities that due for specific cancers where limiting exposure of radiation to other tissues and organs is critical.

I am in my 3rd week. Started to have a lot of gas and loose stools and notice my energy is lower now in afternoons. Nothing else other than that. Wish mine was over like yours. What was your follow up from Mayo Phoenix after your treatments?

I was doing Sprint Triathlons where you swim, bike, then run prior to diagnosis. I had the Space/Oar and it prevented riding a bike so my training and races were stopped. The Space/Oar can dislodge if ride a bike or run/jog. I have discomfort from mine. I was warned about the feeling but is much more pronounced that I thought. I think the biggest benefit is you don't have to have the extra time to put in balloon as Space/oar is already there. Down side is the uncomfortable feeling and restrictions on activities.

Take care and if you can please let me know what your follow up was after your last radiation treatment.

You are right that the studies show same results for both types. My concern was the possibility of future issues from photon. I understand the newer photon machines that can skirt organs to the prostrate. The disadvantage of the proton is the equipment and facilities needed to produce the protons. We had a place near the Phoenix site, but a number of guys had to travel and find lodging. They also have 5 treatments for a number of patients. They were just testing it when I was tested. I had 20 sessions which was the fewest then. The amount of the radiation is the same regardless of the number of treatments.
For the first 3 years I had follow up every 6 months and yearly since then. My PSA was negligible each year. Glad you are able to exercise. It makes it better for you. My Gleason was an 8 and high risk, and now have been cancer free and feel good and active at 78.

jc76: just a bit confused, and apologies if I've misread/misunderstood: you first wrote "I did not have Proton.. ," and then wrote, "...I also chose proton beam...." Elsewhere other than at Mayo Clinics, I've been offered SBRT at 5 fractions, but Proton at ~20 fractions. Is Proton with only 5 fractions available at Mayo?

joecontheroad, I am not reading my original post but if I made a mistake I apologize for that. I will clarify though and answer your questions.

I did not have Photon. Which it traditional radiation like an x-ray. Photon radiation enters body with radiation and exit body with radiation.

I DID have Proton radiation which is a different type of radiation that ends at the target and does not proceed through body. You can see why it has been promoted as less damage going in, during, and no radiation damage going out.

Proton radiation at Mayo facilities. Mayo Jacksonville does not offer proton radiation treatment only photon radiation because they do not have proton radiation facility. At that facility I was offered a 20 round with photon radiation.

Phoenix and Rochester do have proton radiation and offer robust and different types of radiation treatments. It would be up to you and your radiologist/oncologist (RO) trying to do best treatment for your individual cancer and what you want.

Other cancer centers do offer proton radiation treatments with the new 5 treatments over two weeks (3 times first and 2 second). When I got my treatment plan I took what was recommended for me. That was 30 treatments over 6 weeks using the Pencil Beam Proton Radiation. My R/O did say something about could have used scatter beam but their physic department recommended pencil beam because of my ICD/Pacemaker. I was required to have it checked weekly to ensure radiation was not causing any programming issues.

If I miss-wrote something I do apologize. When I was first going through this I did not know about MCC and sure wish I had had that source of information.

My radiation treatment was done a University of Florida Proton Treatment Institute. It is in Jacksonville Florida. UFPTI has been doing proton radiation treatments since 2006 and do a lot of referrals from other providers for eye, throat, brain, type cancers where keeping radiation beam and secondary radiation damage to a minimum as possible..

waymen, thanks for information. I am 77 and plan to be around a lot of years. I too chose to limit the possibility of future issues that photon would have. Mayo Jacksonville does use a new photon machine but the photon radiation still does pass through body.

I was reading that research is showing that the high dose radiation treatments (5) are having more secondary side affects issues than the long dose (20-30). UFPTI where I had my proton done received a 25 million dollar federal grant to do long term research on proton and photo secondary cancer and long term side affects. Right now all research has been 5 year.

waymen, same thing I was told. There is a new photon radiation machine but it still uses photon which passes through body unlike proton. Mayo Jacksonville has this but not proton.

Best to you. I 'm happy with my results and Mayo was wonderful.