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.

dandl48Dave, Great number Dave. Great place to Rochester Mayo. I wish mine had gone down that much at my post 3 month mark.

Were you put on hormone treatments? What does the SBRT stand for. Is that scatter beam radiation treatment? I could not do scatter beam due to ICD/Pacemaker and had pencil beam. What was length of your treatments? Did you have high dose?

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I'm a bit confused, dandl48 Dave, I thought Proton and SBRT were different forms of EBRT (External Beam Radiation Therapy). Did you have both Proton and SBRT? ...at different times, or in a combination treatment?

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My experience is that institutions which offer Proton treatment generally say that it’s superior. Institutions without Proton capability generally say Protons and Photons are equally effective. I chose Photons, mainly because the nearest Proton treatment is 300 miles away and I didn’t want to move to another city for 10 weeks. If Proton treatment had been available closer to home, I would have chosen it on the theory that, while I don’t know enough to judge, I’ve heard no one say Protons are inferior …only equal to or better than Photons.

I finished 37 Photon treatments and 5 months of Orgovyx a few weeks ago. My testosterone is 68 and my PSA is undetectable (but I also had a prostatectomy). Only effect from the radiation and hormones is frequent night time urination which seems to be improving.

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@joecontheroad

I'm a bit confused, dandl48 Dave, I thought Proton and SBRT were different forms of EBRT (External Beam Radiation Therapy). Did you have both Proton and SBRT? ...at different times, or in a combination treatment?

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joecontheroad, I thought similar. I had proton pencil beam.

By the way your I.D. "on the road" is unique. Do you drive for a living?

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@brownsf

My experience is that institutions which offer Proton treatment generally say that it’s superior. Institutions without Proton capability generally say Protons and Photons are equally effective. I chose Photons, mainly because the nearest Proton treatment is 300 miles away and I didn’t want to move to another city for 10 weeks. If Proton treatment had been available closer to home, I would have chosen it on the theory that, while I don’t know enough to judge, I’ve heard no one say Protons are inferior …only equal to or better than Photons.

I finished 37 Photon treatments and 5 months of Orgovyx a few weeks ago. My testosterone is 68 and my PSA is undetectable (but I also had a prostatectomy). Only effect from the radiation and hormones is frequent night time urination which seems to be improving.

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From the research I have done and actually feedback from both photon and proton providers they both say the cure rates are the same.

It is true that those without proton push photon. I chose proton because any chance that I could something to prevent additional damage to organs and tissues and secondary cancers I was going to do.

Both Mayo Rochester and Phoenix offer both and many different options. Hopefully Mayo Jacksonville will follow suit.

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@jc76

joecontheroad, I thought similar. I had proton pencil beam.

By the way your I.D. "on the road" is unique. Do you drive for a living?

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No, dandl48 Dave: when I first joined I was "on the road," traveling for almost eight years after retiring. I've been sort of hometown based for almost 2 years now (with a 5-month sojourn out to the Southwest), but I'm keeping the otr handle in the hope that I get back out there soon!
BTW: All the best with your 68 and undetectable, and better luck with the overnight issue -- it's quite a pain (only figuratively) for me... on the road!

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This may not apply to anyone who has commented but maybe for someone who reads It. I have had double hip replacements which eliminates me from eligibility for Proton Therapy.
I'm now scheduled for SpaceOar, 3 Fiducial Seeds, 26 EBRT and 6 months of Orgovyx. Started the Orgovyx two days ago. Hoping for good results

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@joecontheroad

I'm a bit confused, dandl48 Dave, I thought Proton and SBRT were different forms of EBRT (External Beam Radiation Therapy). Did you have both Proton and SBRT? ...at different times, or in a combination treatment?

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@joecontheroad
Joe, from Mayo Clinic's web site, "Types of stereotactic body radiotherapy
Types of SBRT include:

Linear accelerator, also known as LINAC. LINAC machines use X-rays, also known as photons, to treat tumors.
Proton beam, also called charged particle. This newer type of stereotactic radiotherapy uses protons to treat tumors over several sessions. " Here is the ink, https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794
It can be confusing at times, 🙂

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Wow! -- I've been asking a score of providers and patients over a year-plus about the differences between "SBRT and Proton Therapy," and nobody before has thought to tell me that Proton is *a FORM of* SBRT!

So then, I now wonder, if I am going to ask providers questions about this kind radiation therapy, how do I *differentiate* between asking about Photon SBRT Therapy and whatever the other form of SBRT radiation therapy is called/designated: Photon SBRT vs. Proton SBRT?

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@joecontheroad

Wow! -- I've been asking a score of providers and patients over a year-plus about the differences between "SBRT and Proton Therapy," and nobody before has thought to tell me that Proton is *a FORM of* SBRT!

So then, I now wonder, if I am going to ask providers questions about this kind radiation therapy, how do I *differentiate* between asking about Photon SBRT Therapy and whatever the other form of SBRT radiation therapy is called/designated: Photon SBRT vs. Proton SBRT?

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Personally, if my Doctor didn't know that Proton Therapy was available with SBRT, I would be looking for a different Doctor.

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