I was meeting with an RO who practices IMRT and was referred to a colleague who practices at the Proton center. (so close to my home that I could walk there. ) I had over ruled Proton because my urologist told me that it not used for High Risk PCa.
I also have an enlarged prostate
Looking at their web site they claim it is more precise and has fewer side effects.
Thoughts?
There may be reasons not to use proton therapy, but am confused as to why any of them might be related to risk levels.
I would read up on Tall Allen's criticism of this treatment, then ask those same questions to the folks at the proton clinic.
And perhaps report back the answers.
I think the key here is the precise and depends on what your radiation plan will be. Whole pelvic radiation does not require the precision. I have read there's no clear benefit to Proton but I can't remember anybody saying the choice is worse unless your not covered for the treatment. For example I think if you were radiating just the right half of your prostate it might be a clearer choice.
There are no direct comparisons, but it seems to be no worse and no better than photons. The big difference is cost - you'll want to check to see whether your insurance will cover it (including co-pays).
The Bragg Peak is a theoretical framework. In actuality, there is certainly radiation toxicity. There are no data to support their hype that they have fewer side effects.
prostatecancer.news/2016/08...
But more to the point, you will certainly need whole pelvic coverage with external beam radiation with more intense radiation (boost) to the prostate and the cancerous lymph nodes. That intensification is usually provided by a brachytherapy boost to the prostate. There is a long history of this therapy (since the mid 1980s) and it works well, Brachytherapy using high dose rate (HDR) brachytherapy may have fewer side effects. Experimentally, the boost dose is provided by SBRT or protons.
Allen Thanks for your reply
I know you have all the stats for various questions and that is so helpful. I appreciate that you have pointed me to the best standard of care. That is exactly what I want at this point.
They do use fiducials and space OAR and they have the pinpoint beam at this center so all that sounds good. Covered by my insurance so cost to me is not an issue.
RE: But more to the point, you will certainly need whole pelvic coverage with external beam radiation with more intense radiation (boost) to the prostate and the cancerous lymph nodes.
I do not disagree, but then why am I being sent to Proton center by the RO that you suggested I consult with? seems like Proton is not as good and maybe inferior for what I need.
seems like Proton can hit the tumor and whole prostate as well as specific Lymphs that lit up effectively but Is Proton effectively able to cover the whole Prostate bed?
They usually use whole pelvic IMRT (X-rays) to cover the wider area, with a boost dose of protons to the prostate and the known cancerous lymph nodes. Proton centers usually have both proton and X-ray linacs for this purpose. But I've heard from patients that protons are used for wider coverage too. I'm no expert- ask them, but make sure they really cover the wider area as described here:
prostatecancer.news/2021/05...
As I think about it, you may want to talk to Eric Horwitz at Fox Chase in Philadelphia. He does HDR brachy boost therapy.
"you will certainly need whole pelvic coverage"
If that's what a patient needs, aren't proton beam and Sbrt clearly inappropriate?
My understanding is when they do this they need to bathe the entire pelvis with low levels of radiation.
It would seem that this would be harder to do well with a high precision beam?
I can comment that they can do it with SBRT in less than 10 minutes per treatment on a VMAT linac. or about 45 minutes on Viewray or CyberKnife. I don't know how they do it with protons - seems like it would take a long time.
Not a PC expert at all, just a patient like you.
My PC was labeled very high risk, aggressive ductal form, and the large tumor was attached to my rectum. Proton beam was recommended by my radiologist at Mayo and that is what we did, along with Keytruda. Long summer last year, but today scans show undetectable and if upcoming March PSMA scans show clear, I will be removed from everything and placed on surveillance. Fingers Crossed!
Thanks for your reply DMohr
I do have a different cancer, though I do not know how they can tell, without a genetic test.
I see that you also had Lymph node involvement,
Did you get the whole bed radiated?
Did they discuss why they recommended Proton vs. IMRT?
They radiated the whole pelvis lymph nodes and prostate + seminal vesicles. Cancer was involved in 1 lymph node, rN1. I did go to Mayo for the Proton Beam option, and they seemed to feel that was their best option. Never spent much time on the +/- of the two. Figured one way or the other they were going to blast my cancer, and I let them choose the right weapon.
Dave
Hey Scout4answers,
To add to DMorhr011, several years ago I messaged with a Dr. Gary Larson who manages a proton center. He is very honest, knowledgeable and accessible. When he was diagnosed with bladder cancer those at his center didn't have that much experience treating bladder cancer with proton therapy. He found a doctor at Mass General that had the experience level he was comfortable with.
Dr. Larson wrote about this on another site and I messaged with him. He isn't 'full of himself". He is a very down to earth doctor that would in my opinion be worth speaking with for an opinion. You can't get do overs on some choices. As you are doing, it is best to --Scout4answers!
A link is below--
Dr. Gary Larson Radiation Oncology. Oklahoma City OK
doctor.webmd.com/doctor/gar...
Currumpaw
Great news Dave. Really great news. Well done my friend.
Hello Scout,
I'm a believer in proton beam therapy for numerous reasons that I do not wish to elaborate here. But, before you proceed with your RT treatment, I suggest that you visit the PBT center you mention that is nearby and consult with a RO there. Additionally, I suggest you obtain Robert Ferre's book about his experiences using PBT as his primary treatment of his PCa and his treatment following BCR. His book is available on Amazon at: amazon.com/Best-Treatment-P....
Good luck,
There must be some reason they want to use it for preciseness and strength where some cancers are more resistant. Proton is precise and when I asked about using it once I was told they use it for children's brain cancer, I guess the implication was that the preciseness of Proton was not needed for prostate cancer. But when they describe how it works, it sounds like it would cause less collateral damage on down the line since it doesn't actually do its kill work till it is in the area affected. Carbon ion is even better but we won't have one of those till Mayo Jacksonville gets it in 2025. But carbon ion is used in Japan and some other places for prostate cancer.
< ----because my urologist told me that it not used for High Risk PCa.>Your urologist obviously not bothered to learn anything about proton neam therapy.
I have stage 4 PCa (high enough risk ?) and was treated with PBT 6 years ago.
In 2003, I had brachytherapy and 25 sessions of IMRT. I would not change a thing. As my research medical oncologist and professor said early on after metastasis, “Don’t second guess your primary treatment. It would not have mattered. You had micro-metastasis at original diagnosis.
Pick one based on all available information and move on.
GD
how did he know you had micrometastasis at time of initial treatment?
I finished proton 4 1/2 years ago for G 4+5 at Provision Knoxville, high risk, but so far, so good. The main use at that facility was for treating head and neck cancers in children, the thought being that there would be less long term effects.
Ask the one close by if they make house calls?.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 02/01/2022 7:23 PM EST -Lunar New Year: The Year of the Tiger
SBRT to surgical bed and WPRT (Excalibur Trial) vs IMRT 
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Proton Therapy failed. 
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