PC treatment: Prostatectomy or Proton Beam Therapy

Posted by ebooneac @ebooneac, Jan 15 7:53am

67, very healthy and fit. No symptoms. PSA creeping up in last few tests, 5.6 in latest.

In recent biopsy 11 of 12 cores positive. Most at 3+3, one at 4+3. Doc says we are past active surveillance. MRI scheduled soon to assess spread. Seems my best choices for treatment are prostatectomy or proton beam therapy. Surgeon says surgery is better, will meet with the Emory PBT Doc after MRI. Apparently, it all comes down recovery time and what long term side effects that you want to endure.

Comments, success, regrets?

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Profile picture for jeff Marchi @jeffmarc

@northoftheborder
I know I personally had a PSMA PET scan and it found a metastasis on my spine. I got it zapped three years ago, and I have been undetectable since.

I know so many people I can’t count how many that had PSMA PET scans that found metastasis that were zapped and most are doing just fine. Scholz believes strongly in Waiting for the PET scan to show metastasis and have them treated. He feels it is extending the lives of many people doing it that way instead of salvage radiation

I don’t think there’s any doubt that the PSMA PET scan has proved useful long-term for many people that have had metastasis found. Before that scan, there was no way to find them, though a CT scan was marginally helpful, It’s just not the same.

I know one guy had over 15 metastasis zapped and he’s still around at least a couple years after having it done. Normally, they do chemo for that, but he went for multiple SBRT sessions.

Proton radiation has been used for over 30 years. The guy that invented it had his prostate cancer treated decades ago with it. He lived to Over 100.. They’ve been doing that type of radiation on children for brain tumors.

I’m not so sure these particular techniques are unproven.

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@jeffmarc And likewise, the long-term benefits of proton over (considerably less expensive) photon-beam radiation for overall survival and quality of life are also yet to be proven, at least for prostate cancer.

That doesn't mean that proton-beam RT itself isn't as effective as photon-beam; just that the evidence doesn't exist yet to justify the huge extra cost (in most cases).

In the U.S., a proton-beam facility is often a business venture: it's justified as long as it produces enough revenue to cover the capital and operating cost and turn a reasonable profit, so once someone builds one, they market it hard and try to keep in in constant use.

Much of the rest of the world does medicine on a traige basis, so they want hard evidence that the enormous cost of a proton-beam facility (up to 30× that of an SBRT facility) actually makes a measurable difference in the long run, vs using the money to build more SBRT facilities in under-served areas. I think they're persuaded that it does for brain cancer, but not (yet) for most other types.

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Profile picture for northoftheborder @northoftheborder

@jeffmarc And likewise, the long-term benefits of proton over (considerably less expensive) photon-beam radiation for overall survival and quality of life are also yet to be proven, at least for prostate cancer.

That doesn't mean that proton-beam RT itself isn't as effective as photon-beam; just that the evidence doesn't exist yet to justify the huge extra cost (in most cases).

In the U.S., a proton-beam facility is often a business venture: it's justified as long as it produces enough revenue to cover the capital and operating cost and turn a reasonable profit, so once someone builds one, they market it hard and try to keep in in constant use.

Much of the rest of the world does medicine on a traige basis, so they want hard evidence that the enormous cost of a proton-beam facility (up to 30× that of an SBRT facility) actually makes a measurable difference in the long run, vs using the money to build more SBRT facilities in under-served areas. I think they're persuaded that it does for brain cancer, but not (yet) for most other types.

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@northoftheborder
Not sure you heard my comments about the cost of proton sites going down dramatically.

It used to be they had to build a building to house the proton machine. They now can put it in one or two rooms in an existing building. This is expected to make the cost of putting in proton equal to the cost of putting in photon. This will result in proton radiation being much more frequently used.

From Dr. Rossi in San Diego
Protons deposit most of their energy at the end of their path, a phenomenon called the Bragg peak, before stopping completely. This allows radiation oncologists to deliver a high dose of radiation directly to the tumor and then have the radiation cease, avoiding unnecessary exposure to healthy tissues.

Proton beams can be precisely shaped to conform to the exact contours of the prostate tumor, which is crucial for accurate cancer control and protecting nearby organs.

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Profile picture for jeff Marchi @jeffmarc

@northoftheborder
Not sure you heard my comments about the cost of proton sites going down dramatically.

It used to be they had to build a building to house the proton machine. They now can put it in one or two rooms in an existing building. This is expected to make the cost of putting in proton equal to the cost of putting in photon. This will result in proton radiation being much more frequently used.

From Dr. Rossi in San Diego
Protons deposit most of their energy at the end of their path, a phenomenon called the Bragg peak, before stopping completely. This allows radiation oncologists to deliver a high dose of radiation directly to the tumor and then have the radiation cease, avoiding unnecessary exposure to healthy tissues.

Proton beams can be precisely shaped to conform to the exact contours of the prostate tumor, which is crucial for accurate cancer control and protecting nearby organs.

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@jeffmarc Thanks. That's good news that the cost is coming down.

You mention the technical capability:

"Proton beams can be precisely shaped to conform to the exact contours of the prostate tumor, which is crucial for accurate cancer control and protecting nearby organs."

The challenge now is to find evidence that the improved technical capability actually leads to significantly-improved 5–10 year patient outcomes. That's still the missing piece of the research puzzle. If they do eventually find that evidence, and the cost of proton-beam facilities comes down close to that of photon-beam, then we can expect to see much wider availability in the future.

But right now, those are still "if"s (last I've seen). So the "(more) accurate cancer control" remains an informed hypothesis.

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Do research on your own. Look for a study with anti cd-40 most cancer centers are doing them.

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Profile picture for northoftheborder @northoftheborder

@jeffmarc Thanks. That's good news that the cost is coming down.

You mention the technical capability:

"Proton beams can be precisely shaped to conform to the exact contours of the prostate tumor, which is crucial for accurate cancer control and protecting nearby organs."

The challenge now is to find evidence that the improved technical capability actually leads to significantly-improved 5–10 year patient outcomes. That's still the missing piece of the research puzzle. If they do eventually find that evidence, and the cost of proton-beam facilities comes down close to that of photon-beam, then we can expect to see much wider availability in the future.

But right now, those are still "if"s (last I've seen). So the "(more) accurate cancer control" remains an informed hypothesis.

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@northoftheborder "... significantly-improved 5–10 year patient outcomes."

The problem with a single metric is:

Treatment A: You survive for 10 years, but during that time your are incontinent, ED, & have brain fog, pain, & whatever. In the last three months you quickly deteriorate & die.

Treatment B; You survive for 5 years, with no issues until the last three months, when you quickly deteriorate & die.

Which do you choose? More importantly, how do researchers rank treatments A & B?

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Profile picture for Read & learn & live! @readandlearn

@northoftheborder "... significantly-improved 5–10 year patient outcomes."

The problem with a single metric is:

Treatment A: You survive for 10 years, but during that time your are incontinent, ED, & have brain fog, pain, & whatever. In the last three months you quickly deteriorate & die.

Treatment B; You survive for 5 years, with no issues until the last three months, when you quickly deteriorate & die.

Which do you choose? More importantly, how do researchers rank treatments A & B?

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@readandlearn Absolutely right. But I don't think this is about a quality vs quantity of life trade-off like the one you describe.

Does anyone know of studies showing a significant reduction in ED, incontinence, etc for proton vs photon after 5–10 years? Proton's improved accuracy *should* theoretically help with that, but the proof is pudding (or a couple of other words starting with "p").

And note that the absence of evidence isn't evidence of absence. It is quite possible that researchers will discover these long-term benefits in time, even if they're still speculative right now.

p.s. I don't think there are any claims that proton- vs photon-beam radiation would have an impact on brain fog — that would be more related to hormone therapy and/or chemo.

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Profile picture for Read & learn & live! @readandlearn

@northoftheborder "... significantly-improved 5–10 year patient outcomes."

The problem with a single metric is:

Treatment A: You survive for 10 years, but during that time your are incontinent, ED, & have brain fog, pain, & whatever. In the last three months you quickly deteriorate & die.

Treatment B; You survive for 5 years, with no issues until the last three months, when you quickly deteriorate & die.

Which do you choose? More importantly, how do researchers rank treatments A & B?

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@readandlearn Yes. Exactly my dilemma. I feel great now. Whatever treatment I choose, am I then starting a self inflicted physical decline of surgical injury and medication side effects. Or, choose to do nothing and take my chances. I have only seen one small study of men that chose to do nothing. As with everything else I have seen, results are mixed.

If I choose treatment, and the results are similar, the chance of recurrence is similar, the salvage is similar and the prospect of long term medication is similar, I am going to choose the treatment that I think will cause the fewest long term side effects. Incontinence and proctitis being the worst I can imagine.

Presently, I am thinking about a one and done strategy. If treatment works, great. If not, I then will take my chances. I don't see myself on long term medication lingering in the world of side effects.

My options will become a bit clearer as my first post biopsy MRI will be in a couple of weeks.

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Profile picture for Read & learn & live! @readandlearn

@northoftheborder "... significantly-improved 5–10 year patient outcomes."

The problem with a single metric is:

Treatment A: You survive for 10 years, but during that time your are incontinent, ED, & have brain fog, pain, & whatever. In the last three months you quickly deteriorate & die.

Treatment B; You survive for 5 years, with no issues until the last three months, when you quickly deteriorate & die.

Which do you choose? More importantly, how do researchers rank treatments A & B?

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@readandlearn
While your two scenarios sound possible that really isn’t the way it happens. People don’t usually quickly deteriorate and die From prostate cancer. Proton, photon or others.

It’s a more drawn out thing and there are many treatments people can have that keep them going for years after they have problems with reoccurrence.

I’ve had incontinence for 10 years and ED for 16. Had brain fog for at least six years, but it doesn’t stop me from doing anything. I just can’t remember the names of things sometimes and have to look it up. Had three reoccurrences in those 10 years but I’ve been undetectable for the last 26 months due to the drugs we have available. Still haven’t had chemo, Pluvicto Or a PARP inhibitor.

I know a lot of other people in similar situations.

So I wonder what your point really was. Something about a single treatment Causing issues?

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Profile picture for jeff Marchi @jeffmarc

@readandlearn
While your two scenarios sound possible that really isn’t the way it happens. People don’t usually quickly deteriorate and die From prostate cancer. Proton, photon or others.

It’s a more drawn out thing and there are many treatments people can have that keep them going for years after they have problems with reoccurrence.

I’ve had incontinence for 10 years and ED for 16. Had brain fog for at least six years, but it doesn’t stop me from doing anything. I just can’t remember the names of things sometimes and have to look it up. Had three reoccurrences in those 10 years but I’ve been undetectable for the last 26 months due to the drugs we have available. Still haven’t had chemo, Pluvicto Or a PARP inhibitor.

I know a lot of other people in similar situations.

So I wonder what your point really was. Something about a single treatment Causing issues?

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@jeffmarc "While your two scenarios sound possible that really isn’t the way it happens. People don’t usually quickly deteriorate and die From prostate cancer. Proton, photon or others."

I agree. I was just trying to make the two endings the same, in order to compare only length of life vs quality of life with regard to the initial treatment.

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