1. < Prostate Cancer

How did you choose between proton or photon radiation?

Posted by jc76 @jc76, Jun 2, 2023

Got really different feedback from different urologist and radiation/oncologist. The Decipher test did not match biopsy. A lot of different opinions of pros and cons of proton verus photon.

I am in my 3rd week now of proton therapy. M-F for 6 weeks. So far no side affects. I am an avid exerciser (was doing Sprint Triathlons prior to prostrate cancer). I could no longer train or do triathlons with Space/Oar so added walks to my swimming and water aerobics.

I am not sure if exercise helps but seems to me with me. The only issue I have is weight. Can't gain or lose more than 5 lbs due to measurements. So my weight went up prior to treatments (stress) and don't like it but did not let it stop me from exercising which I think really helps you get through the treatments both physically and mentally.

Would like to hear those who chose proton over photon and your reasons why. Mine was information I gathered was proton limited the amount of radiation to other tissues and organs more than photon. A lot of debate but not much research beyond 5 year studies.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

joecontheroad | @joecontheroad | Oct 7, 2023
In reply to @jc76 "joecontheroad, I am not reading my original post but if I made a mistake I apologize..." + (show)
@jc76

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..

Jump to this post

Thanks for such a quick and complete response, jc76!

The one great advantage that the offer of mri-guided SBRT has for me in my situation, of course, is the five days of treatment vs. twenty or so with Proton. It seems that there is a slight problem for me with the SBRT, though, and if I could do a shorter version Proton treatment with at least reasonably equal efficacy and side effects, that would be the answer.

If I got this correctly, you were finished your treatment a couple of months ago. Hope it all went well and you're doing well and continue to do so.

Again, much thanks.

REPLY
jb2buckwater | @jb2buckwater | Oct 7, 2023
In reply to @joecontheroad "jc76: just a bit confused, and apologies if I've misread/misunderstood: you first wrote "I did not..." + (show)
@joecontheroad

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?

Jump to this post

Had Proton at Mayo, 5 doses which is now the "normal" regimen. There are also studies into 2 and even 1 dose regimens. PSA has dropped dramatically since last treatment at Mayo, Rochester. We are all fortunate to have the options of Photon, Proton and Brachy... I have heard too many bad scenarios with RP.

Best wishes for successful treatment.

REPLY
2 replies
joecontheroad | @joecontheroad | Oct 7, 2023
In reply to @jb2buckwater "Had Proton at Mayo, 5 doses which is now the "normal" regimen. There are also studies..." + (show)
@jb2buckwater

Had Proton at Mayo, 5 doses which is now the "normal" regimen. There are also studies into 2 and even 1 dose regimens. PSA has dropped dramatically since last treatment at Mayo, Rochester. We are all fortunate to have the options of Photon, Proton and Brachy... I have heard too many bad scenarios with RP.

Best wishes for successful treatment.

Jump to this post

Bingo, jb2buckwater!

Thanks for that, and would be happy to hear more at some point if you're willing.

I'm also glad to hear it was at Rochester, not Phoenix. I did not get a very warm* or encouraging reception when I tried to get some help there this past summer.
*Make that "congenial": it was over 100⁰ degrees every day! 🙂

REPLY
1 reply
jb2buckwater | @jb2buckwater | Oct 8, 2023
In reply to @joecontheroad "Bingo, jb2buckwater! Thanks for that, and would be happy to hear more at some point if..." + (show)
@joecontheroad

Bingo, jb2buckwater!

Thanks for that, and would be happy to hear more at some point if you're willing.

I'm also glad to hear it was at Rochester, not Phoenix. I did not get a very warm* or encouraging reception when I tried to get some help there this past summer.
*Make that "congenial": it was over 100⁰ degrees every day! 🙂

Jump to this post

Joecontheroad,

Yes, Rochester... cold as heck in December - January, but worth the trip from Portland, OR where we live. No Proton Beam in Oregon. Team in Rochester were amazingly supportive... A+ Team. Reassuring, supportive, friendly... can't say enough. Locals call it Minnesota Nice. The campus is huge with 4500 MDs and new buildings going up all over the place. A national treasure... even at -23 F degrees.

Best wishes for successful journey.

REPLY
jc76 | @jc76 | Oct 8, 2023

I sure wish I lived closer to Rochester and could have gone to Mayo there. Mayo Jacksonville is where I go for all my doctor needs but chose UFPTI because Jacksonville did not offer proton.

Even when I went to UFPTI for proton treatments they said the main difference between proton and photon was that the radiation does not proceed past the prostrate like photon does. There is also much less radiation going in as almost all proton energy can be programmed to stop at prostrate.

However even UFPTI stated that the cure rates for photon and proton were basically the same. Mayo Jacksonville is an outstanding medical facility and my disappointment with them is that I could not get the proton treatment there. They are building a brand new cancer center that will have proton radiation treatments but a few years away.

I just had my 3 month follow up and my PSA dropped from 3.75 to 1.2. I was told goal was to have it below 1 but statistics showed usually does not get to lowest until 1-2 years after last treatment.

Would like to hear from others what their PSA was at 3 month mark to what the PSA was going in to treatments (radiation only). And if several years after what was time line to get to the lowest mark.

REPLY
1 reply
jc76 | @jc76 | Oct 8, 2023
In reply to @jb2buckwater "Had Proton at Mayo, 5 doses which is now the "normal" regimen. There are also studies..." + (show)
@jb2buckwater

Had Proton at Mayo, 5 doses which is now the "normal" regimen. There are also studies into 2 and even 1 dose regimens. PSA has dropped dramatically since last treatment at Mayo, Rochester. We are all fortunate to have the options of Photon, Proton and Brachy... I have heard too many bad scenarios with RP.

Best wishes for successful treatment.

Jump to this post

jb2buckwater, Can you share what your PSA dropped to after last treatment and what is was when started?

Did you have radiation only or radiation and hormone treatments?

REPLY
1 reply
jb2buckwater | @jb2buckwater | Oct 8, 2023
In reply to @jc76 "jb2buckwater, Can you share what your PSA dropped to after last treatment and what is was..." + (show)
@jc76

jb2buckwater, Can you share what your PSA dropped to after last treatment and what is was when started?

Did you have radiation only or radiation and hormone treatments?

Jump to this post

PSA tests in August 2022 were between 10.5 and 12. PSA test at at Mayo in Dec. before treatment was 8.9. PSA in April 2023 after treatment ended 1/19/2023 was 2.7. Told that it could take longer than 24 months to reach new low. No hormone therapy... Gleason 6 Low Risk Intermediate due to the 10.5 reading in August.

REPLY
jb2buckwater | @jb2buckwater | Oct 8, 2023
In reply to @jc76 "I sure wish I lived closer to Rochester and could have gone to Mayo there. Mayo..." + (show)
@jc76

I sure wish I lived closer to Rochester and could have gone to Mayo there. Mayo Jacksonville is where I go for all my doctor needs but chose UFPTI because Jacksonville did not offer proton.

Even when I went to UFPTI for proton treatments they said the main difference between proton and photon was that the radiation does not proceed past the prostrate like photon does. There is also much less radiation going in as almost all proton energy can be programmed to stop at prostrate.

However even UFPTI stated that the cure rates for photon and proton were basically the same. Mayo Jacksonville is an outstanding medical facility and my disappointment with them is that I could not get the proton treatment there. They are building a brand new cancer center that will have proton radiation treatments but a few years away.

I just had my 3 month follow up and my PSA dropped from 3.75 to 1.2. I was told goal was to have it below 1 but statistics showed usually does not get to lowest until 1-2 years after last treatment.

Would like to hear from others what their PSA was at 3 month mark to what the PSA was going in to treatments (radiation only). And if several years after what was time line to get to the lowest mark.

Jump to this post

Everything I have read gives similar prognosis for Photon, Proton and Brachy... all very good results. It will probably be some time yet before we know whether there are quantifiable benefits to these therapies when comparing which is "Best".
Best wishes for success to all.

REPLY
1 reply
jc76 | @jc76 | Oct 9, 2023
In reply to @jb2buckwater "Everything I have read gives similar prognosis for Photon, Proton and Brachy... all very good results...." + (show)
@jb2buckwater

Everything I have read gives similar prognosis for Photon, Proton and Brachy... all very good results. It will probably be some time yet before we know whether there are quantifiable benefits to these therapies when comparing which is "Best".
Best wishes for success to all.

Jump to this post

Read same. The cure rate for proton and photon were same just different radiation and proton not passing through body like photon. Long range studies will reveal if this made significant secondary cancers and long term affects. So far a similar with 5 year studies.

Thanks for information.

REPLY
dandl48 Dave | @dandl48 | Oct 10, 2023

I chose Proton because I didn't want the radiation passing through my entire body. Before my SBRT my PSA was 11+, at 3 months it was down to -0.1 and has remained there. The procedure was done in 9/2020 at Mayo Rochester. I just had my 3-year blood draw FedEx 'ed to Rochester yesterday again hoping for -0.1 at this point.

REPLY
View MoreView Less
Please sign in or register to post a reply.