Considering Tulsa Pro or Proton radiation (full gland)

@bjroc When I was diagnosed with prostate cancer (in April 2012), my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, it was about self-advocacy and shared decision-making.

As for convincing others about proton and prostate cancer —> I’m not sure why proton radiation works so much better than photon radiation with other types of cancer treatments, and wonder if the laws of quantum physics change for prostate cancer???? Or does patient compliance play a role in the outcome?

Yes, there are some specific photon (x-ray) technologies, that by simulating what’s inherent in proton radiation, control the beams and get similar results. Have you asked if they have those specific photon machines?

I’m not familiar with TulsaPro and am not sure what the salvage treatment options are post-TulsaPro (and not sure if proton is appropriate). If it’s only a single lesion being treated, I’d look at other options that are targetable and controllable - like focal therapy (e.g., cryo), brachytherapy, or SBRT (all with many months of ADT).

Good luck!

@brianjarvis As far as I can tell it is the doctors turning me down for proton, of course maybe they know something so hard to say for 100% sure but no doctor said it was my insurance they just gave me a firm no need for proton in the prostate world at all.

@brianjarvis Several studies have shown proton is not superior to photon in terms of outcomes and quality of life. It is not the panacea people make it out to be. Use your favorite search engine.

Also there is some thought that PC is better controlled with fewer higher doses, than more lower doses.

Stay Strong Brother(s) We Got This.

Hi,
Proton therapy is more targeted, resulting in less damage to surrounding healthy organs and tissue. This often causes fewer side effects, such as reduced fatigue or lower risk of gastrointestinal issues.
X-ray therapy is effective but can damage healthy tissues in the path of the beam. They are two very different types of external beams. Based on your comments on 2-3mm overlap, that why it is wise to use the spaceAOR gel as extra insurance in my humble non medical opinion. By using the gel and in the hands of an experienced technician the bladder damage should be minimal or non existent.

@clevelandguy The gel spacer only works for the rectum - there is no barrier for the bladder.
Phil

@toolbelt This gets into a much lengthier discussion; only highlights here….

Yes, recent large-scale studies comparing proton and photon therapies - such as COMPPARE (comparing effectiveness, side effects, and patient-reported quality of life) and PARTIQoL (comparing quality of life and tumor control) - indicated similar tumor control rates and patient-reported quality of life (QOL) outcomes.

Taking a step back…..

The results of large-scale studies, which use hundreds or thousands of subjects, are great at determining what the average results and outcomes should be expected across large populations, and for comparing the averages of one option against the averages of another option. Insurance companies use that information because it provides them an estimate of what their average costs will be across populations. Institutions use them for the same reason - in determining what will the average impacts and costs will be (of various things they have to scale for).
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But, for predicting what a single individual’s results will be, large scale studies aren’t helpful. They can only express the outcome “on average.”
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Decades before either protons or photons were used for cancer (or other) treatments, in scientific research it was shown that protons (heavy subatomic particles) have properties that photons (x-rays) do not have, in that they do not pass through a target area and out the other side (and less scatter as well).
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And (eventually) when they applied this scientific theory to use proton radiation on solid tumor cancers, they found proton radiation to be generally superior for solid tumors located near critical, sensitive structures due to its precise targeting and reduced exit dose (i.e., Bragg-Peak characteristic), leading to fewer side effects.
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So, the question has to be asked —> if proton radiation has been shown to be generally superior for other solid tumors, why do these recent studies show that photon radiation QOL outcomes are similar to proton (i.e., why is proton generally not superior)?
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Back in 2020 when I was making my photon vs proton treatment decision, these were the level of discussions my RO and I had. Some early findings from both these studies were out there, however we went with proton anyway.

@brianjarvis

I think brianjarvis is saying exactly the right thing, that is why I wanted proton. But the doctors have little say anymore, everything is dictated by insurance run guidelines or otherwise disinterest of doctors who deal with too much paperwork. It isn't happening now or in near future to move toward more affordable proton and standard use of proton. I was even told by several places that the Varian proton machines are being discontinued but searches online do not show that (Varian was bought by Siemans). So that is one less proton system sold.

I think in a decade or more things may change and swing back to what brianjarvis has carefully laid out and is no doubt true but it takes many more good articles and the way articles are that is a huge side business too. Various interests promote agendas by repeat articles everywhere which just makes for too many articles saying the same things and real science slowing down even more. It will take time, lots of time. But for me today, I need to decide something, nobody will even offer me proton so what can I do, I am left with hoping I get one of the better x-ray/photon setups in the Varian ETHOS or Varian Truebeam both available to me locally, there is also a cyberknife too which seems a bit older.

Proton is one of the futures, so are better easier focal therapy like the Vapor/Vanquish and maybe Tulsa Pro if they get more bugs out because I had it and it is buggy still. So there might be a better future if the business interests stay out and doctors go back to science instead of production low end treatments and so on. What can we do, unfortunately not too much I find, I am a patient in need now.

@brianjarvis

I think brianjarvis is saying exactly the right thing, that is why I wanted proton. But the doctors have little say anymore, everything is dictated by insurance run guidelines or otherwise disinterest of doctors who deal with too much paperwork. It isn't happening now or in near future to move toward more affordable proton and standard use of proton. I was even told by several places that the Varian proton machines are being discontinued but searches online do not show that (Varian was bought by Siemans). So that is one less proton system sold.

I think in a decade or more things may change and swing back to what brianjarvis has carefully laid out and is no doubt true but it takes many more good articles and the way articles are that is a huge side business too. Various interests promote agendas by repeat articles everywhere which just makes for too many articles saying the same things and real science slowing down even more. It will take time, lots of time. But for me today, I need to decide something, nobody will even offer me proton so what can I do, I am left with hoping I get one of the better x-ray/photon setups in the Varian ETHOS or Varian Truebeam both available to me locally, there is also a cyberknife too which seems a bit older.

Proton is one of the futures, so are better easier focal therapy like the Vapor/Vanquish and maybe Tulsa Pro if they get more bugs out because I had it and it is buggy still. So there might be a better future if the business interests stay out and doctors go back to science instead of production low end treatments and so on. What can we do, unfortunately not too much I find, I am a patient in need now.

@brianjarvis

I think brianjarvis is saying exactly the right thing, that is why I wanted proton. But the doctors have little say anymore, everything is dictated by insurance run guidelines or otherwise disinterest of doctors who deal with too much paperwork. It isn't happening now or in near future to move toward more affordable proton and standard use of proton. I was even told by several places that the Varian proton machines are being discontinued but searches online do not show that (Varian was bought by Siemans). So that is one less proton system sold.

I think in a decade or more things may change and swing back to what brianjarvis has carefully laid out and is no doubt true but it takes many more good articles and the way articles are that is a huge side business too. Various interests promote agendas by repeat articles everywhere which just makes for too many articles saying the same things and real science slowing down even more. It will take time, lots of time. But for me today, I need to decide something, nobody will even offer me proton so what can I do, I am left with hoping I get one of the better x-ray/photon setups in the Varian ETHOS or Varian Truebeam both available to me locally, there is also a cyberknife too which seems a bit older.

Proton is one of the futures, so are better easier focal therapy like the Vapor/Vanquish and maybe Tulsa Pro if they get more bugs out because I had it and it is buggy still. So there might be a better future if the business interests stay out and doctors go back to science instead of production low end treatments and so on. What can we do, unfortunately not too much I find, I am a patient in need now.

@bjroc Have you consulted with the University of Florida Proton Therapy Institute? All they do is proton so if they say you're not an appropriate candidate I'm sure they'll give you a good reason. I consulted with them and was very impressed, but went with a highly recommend hospital with proton much closer to my home. If I lived closer to Jacksonville or I didn't have a proton center closer they would have been my choice.