Mo recommending proton?: In my case it... - Advanced Prostate...

Advanced Prostate Cancer

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Mo recommending proton?

californiaproton profile image

In my case it was necessary to educate myself fully about proton vs ebrt, brachytherapy which took some time.The discussion with mo went in the direction of trials not conclusive on outcomes of one over another and proton centers having large financial burdens.

But! Much like roxysdad post, it is more like planning long term I have had success with Dr. Rossi, and so has my Sr. brother who has been actively battling for 18 yrs.

The controlled amount of radiation to the target without over dosing surrounding tissue is my primary reason.

And while there having brief conversations with Rossi about the (very small children) who went in for treatment in the mornings. I knew I had made the right descion for myself.

In 2024 our good options are many.

I still have a good working relationship with the mo that was not encouraging Proton.

Peace in your Journey.

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californiaproton profile image
californiaproton
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13 Replies
Tall_Allen profile image
Tall_Allen

Your error is believing that "The controlled amount of radiation to the target without over dosing surrounding tissue is my primary reason.." What actually happens is that protons are diffracted by the nozzle, and generate secondary neutrons that penetrate into surrounding tissue. Proton therapy often requires the use of spread-out Bragg peaks to treat large-sized volumes like the prostate. This compromises the tissue-sparing advantage of the sharp Bragg peak. In spite of the theoretical Bragg peak, in actual practice, protons seem to be no less toxic to surrounding tissue.

Proton centers have avoided a randomized comparison which might disprove any advantage and loss of their huge investment. All we have is comparisons like these:

prostatecancer.news/2016/08...

prostatecancer.news/2016/08...

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I always thought that proton therapy was hyped BS. I see why proton centers do not want studies done. If you knew exactly the limit of the cancer and could target it precisely well maybe ,but you don't.

I am placing my bet on alpha emitting nuclear medicine with highly specific ligands that do not expose non-cancerous tissue to radiation and if they do a little WTF, we will all be long gone before the secondary effects of a little stray radiation take effect :)

But if you want to enrich some venture capitalist who put their money into a proton center, feel free to do so. Watch them squirm when asked to prove the advantage of proton therapy with hard facts.

The positives I have heard re proton are all from people who invested a bunch of their own money (insurance may not pay for proton therapy) and who need to feel good about their investment. They are great, their cancer is cured, probably just as much as with any other treatment. Lets see what they say in 10 years.

WhatHump profile image
WhatHump in reply to Tall_Allen

If I could give this 10 “likes” I would. That is an invaluable nuanced observation.

j-o-h-n profile image
j-o-h-n in reply to WhatHump

He likes "loves" instead....

Good Luck, Good Health and Good Humor.

j-o-h-n

quietcorner profile image
quietcorner

The 3 ROs my partner saw (seeking 2nd 3rd and 4th opinions!) all said that if their insurance covered proton therapy - as my partner's Medicare does - they would take proton therapy over any other form of treatment. Of course, this was for his particular situation: PCa only in the prostate no margins no mets no lymph nodes

NotDFL profile image
NotDFL in reply to quietcorner

Proton therapies are financially very rewarding for the practitioners...

quietcorner profile image
quietcorner in reply to NotDFL

None of the 3 ROs my partner saw practiced proton therapy, they were traditional radiation SBRT practitioners. They were saying that, if they were in my partner's shoes, they would NOT have traditional radiation, but instead would opt for proton therapy.

Derf4223 profile image
Derf4223

What I fail to see about the whole proton-vs-photon thing is that an externally generated beam radiates tissues on the way to the prostate and after exiting the prostate, no matter what. Rotating the beam just spreads the dose of such tissues 180 degrees, but due to the bragg intensity vs angle curve, the tissues closest to the prostate receive a lot more than distant tissues. But so what? The science behind it is to damage DNA of both healthy and cancer cells, where the latter won't reproduce but take some time to die off completely.

wilcoxsaw profile image
wilcoxsaw

Having had 80 proton treatments, 35 by Rossi, I disagree with those opinions offered above. I've had spots treated that, had I been treated with conventional radiation, would have damaged critical structures including lung, bowel, spleen, pulmonary vessel, and spinal cord. Rad oncs that used conventional radiation could not treat these spots safely they stated, but Rossi with his technology was able to do so. To date no complications or side effects have surfaced from these treatments dating back to 2017. PSMA scans have verified efficacy of these treatments with no recurrence.

The same principal holds true for pediatric patients, protons are used to successfully and safely treat tumors in areas that rad oncs using conventional radiation cannot treat. This is done daily at most proton centers.

TA and others above stating proton centers have avoided a randomized comparison of protons vs photons are wrong. 2 such studies are underway, one at Mass General the other headed by Nancy Mendenhal at Florida protons. Data is being gathered from patients at multiple centers across the US. The Mass General study has been underway for a number of years, Florida less years. When complete data will be published.

Sadly whenever the topic of protons is addressed on this forum, many with no experience having never consulted with rad oncs regarding protons vs photons offer their opinions based on cost of protons, capital outlay of facilities, what they've read on line, erroneous explanations of physics/Bragg peak, or beams vs particles to justify their opinions. Hopefully those reading their opinions will seek out factual information from experts before choosing a treatment option and not base treatment on the opinions offered on this forum.

j-o-h-n profile image
j-o-h-n in reply to wilcoxsaw

Great Jab........ Now I'm waiting for your left hook....BABA BING! - BADA BOOM!

Good Luck, Good Health and Good Humor.

j-o-h-n

It sounds like you are talking about therapy to the prostate but a word of caution in general. Before having had proton radiation, I wish I had done a better job grilling the RO on how many treatments he had done to my specific met location and what the results were. The procedure did not go well in so many ways. Just because an RO may have done thousands of procedures, it doesn't mean they have a track record on a specific procedure.

SportsFanx99 profile image
SportsFanx99

The very last sentence of TA’s first 2016 link above, mentions that pencil beam scanning “may be able to improve toxicity even further.” Here is a recent study that attempts to explore the scanning techniques:

mdpi.com/2072-6694/16/2/403

I had 44 fractions of pencil beam scanned proton therapy in 2020, in Irving Tx, with Dr. Andrew Lee. Dr. Lee helped “pioneer” proton therapy at MD Anderson after being “recruited” to establish the Irving center in 2015.

3.5 years later, everything is as initially advertised (no side effects), PSA is now 0.52, and still slowly decreasing. PSA gets checked in 4 month intervals, and Dr. visits have been reduced to every other year. Truth in advertising, I was in the low risk category.

The usual issues with proton therapy have historically been cost and access. Insurance is covering it with much greater frequency now, as mine did in 2020, so with insurance coverage, the net cost (out of pocket max) to the patient will be the same, regardless of which treatment is chosen.

I was fortunate to live in easy driving distance to a center, so access was not an issue for me. More and more centers are coming online, so the issue of access continues to decrease.

Proton therapy is not indicated for all prostate cancer cases, but like the original poster, I remain a proponent of it when it is.

here is TA’s link:

healthunlocked.com/redirect...

wilcoxsaw profile image
wilcoxsaw in reply to SportsFanx99

From TAs analysis per his link :"Bryant et al. report on their retrospective analysis of the records of 1,327 men consecutively treated between 2006 and 2010."This data presented for comparison by TA is 14+ years old, before the advent of the use of scanning beam proton

technology( California protons one of the first to use this technology exclusively did not begin treating patients until approximately 2014), the use of up-to-date imaging technology, and was prior to the use of image guided radiation treatment.

This retrospective data presented is no longer up to date or accurate, and in the medical science world data from the year range 2006 to 2010 has long since become antiquated as many advances have taken place since that time and should not be used for comparison of one type of treatment to another.

As I mentioned previously in this post, two large randomized studies currently underway, the COMPPARE and PARTIQoL, comparing proton to photon treatment will accurately address the efficacy of both treatments including side effect profiles.

Hopefully those seeking treatment choices will seek out up-to-date information from medical professionals and up-to-date studies if available and not base their treatment choices on the opinions offered on this forum.

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