PC treatment: Prostatectomy or Proton Beam Therapy

@ebooneac
Not too muddy the waters as you seem to have narrowed it down to removal or Proton, but you might also want to consider a Radiation machine that has built-in Mri versus fused images. What they can see they can treat. I had the Mridian machine and the only other machine that has a built-in MRI is the Electa unity. I had five treatments that finished in February 2023. I also had spaceoar inserted. The built-in Mri means that the Health tissue outside of your Prostate is exposed to last Radiation than other forms of radiation. That means there is a difference, side effects and quality of life, according to the Mirage randomized trial. These are not easy decisions but good luck. You are definitely in the right spot to get Information.

@climateguy

As a layman, trying to make the best decision possible, I knew that all randomized trials had their strengths and their weaknesses in terms of design. For me, the mirage trial was one of those components in my decision-making process and since February 2023 when I was treated, what I saw in the trial turned out to be true.

In Dr Patrick Walsh‘s book, he discusses biases, and there are many of them in the medical community regardless of one’s experience. Those biases are unintentional but real. I’ve run into those many times.

I had researched the Mridian machine in several ways, including talking to the president of the manufacturer at the time who was also able to give me feedback from hospitals that were using it.

I spoke with six Radiation oncologists specifically about the machine versus Proton Therapy, which was the other choice, I had narrowed myself down to. Those included Radiation oncologists who were either trained or worked at Cornell Weill, Memorial Sloan-Kettering, MD Andersen, Moffitt Cancer Center, Miami Cancer Center and of course, where I was treated at the Orlando Cancer Center, all with substantive experience related to what I wanted.

I have not researched Dr. Roach, and everybody obviously has to make their own decision, but I felt that the expertise in the oncologists experience with the machine and within the industry, and by the way with Proton, as doctors of centers of excellence with every day extensive experience, was enough for me to make my decision for the Mridian machine. The only other machine I would’ve considered would be the Electra unity, another Radiation machine that has a built-in MRI, but slightly different features than the Mridian. If the Proton Therapy machines had a built-in MRI, I might’ve chosen that machine.

Finally, a not so scientific note, I am seeing that hospitals are either refusing or leaning people towards other forms of radiation machines because the popularity of the Mridian machine and the Electra unity, as they are trying to be saved and used for those people with cancer who’s organs move more than the organs of people who have prostate cancer. That seems to be more of an administrative decision related to how many people they need to put through a radiation machine at any given time. I consider this to be one of many biases that are out there again , that are unintentional but applicable, especially since many oncologist take the position that the outcomes are the same no matter what choice you make. One oncologist who happened to also be the second in command of a large well-known cancer hospital surprised me by saying “if you want to use the real time dynamic planning capabilities of the Mridian Machine, then you should try another hospital.“ that was back in the beginning of January 2023 and it seems that that has expanded in some ways to other hospitals. What he should’ve said to me is we don’t normally use it for Prostate Cancer in our hospital but we will in your case and if we have to use that dynamic capability, we will use it.

The Internal debate as you mentioned was not an easy one and nothing is black and white in any of these decisions, whether they involve experts or patients. All we can do is the best we can to collect and correlate the information from as many sources as we can. Good luck.

@climateguy

As a layman, trying to make the best decision possible, I knew that all randomized trials had their strengths and their weaknesses in terms of design. For me, the mirage trial was one of those components in my decision-making process and since February 2023 when I was treated, what I saw in the trial turned out to be true.

In Dr Patrick Walsh‘s book, he discusses biases, and there are many of them in the medical community regardless of one’s experience. Those biases are unintentional but real. I’ve run into those many times.

I had researched the Mridian machine in several ways, including talking to the president of the manufacturer at the time who was also able to give me feedback from hospitals that were using it.

I spoke with six Radiation oncologists specifically about the machine versus Proton Therapy, which was the other choice, I had narrowed myself down to. Those included Radiation oncologists who were either trained or worked at Cornell Weill, Memorial Sloan-Kettering, MD Andersen, Moffitt Cancer Center, Miami Cancer Center and of course, where I was treated at the Orlando Cancer Center, all with substantive experience related to what I wanted.

I have not researched Dr. Roach, and everybody obviously has to make their own decision, but I felt that the expertise in the oncologists experience with the machine and within the industry, and by the way with Proton, as doctors of centers of excellence with every day extensive experience, was enough for me to make my decision for the Mridian machine. The only other machine I would’ve considered would be the Electra unity, another Radiation machine that has a built-in MRI, but slightly different features than the Mridian. If the Proton Therapy machines had a built-in MRI, I might’ve chosen that machine.

Finally, a not so scientific note, I am seeing that hospitals are either refusing or leaning people towards other forms of radiation machines because the popularity of the Mridian machine and the Electra unity, as they are trying to be saved and used for those people with cancer who’s organs move more than the organs of people who have prostate cancer. That seems to be more of an administrative decision related to how many people they need to put through a radiation machine at any given time. I consider this to be one of many biases that are out there again , that are unintentional but applicable, especially since many oncologist take the position that the outcomes are the same no matter what choice you make. One oncologist who happened to also be the second in command of a large well-known cancer hospital surprised me by saying “if you want to use the real time dynamic planning capabilities of the Mridian Machine, then you should try another hospital.“ that was back in the beginning of January 2023 and it seems that that has expanded in some ways to other hospitals. What he should’ve said to me is we don’t normally use it for Prostate Cancer in our hospital but we will in your case and if we have to use that dynamic capability, we will use it.

The Internal debate as you mentioned was not an easy one and nothing is black and white in any of these decisions, whether they involve experts or patients. All we can do is the best we can to collect and correlate the information from as many sources as we can. Good luck.

@bens1
The problem recommending the Meridian machine in 2023 could’ve been the fact that the company that made it was Having major financial problems and went out of business, actually bankrupt, in late 2023. In 2024 another company took over the Meridian equipment and has continued to improve it. There was a time in there that it was not being supported at all, and that did cause some problems.

@bens1 Mack Roach is quite critical of the MIRAGE trial
His critique starts at minute 15:00 and goes to 24:45 https://www.youtube.com/watch

He started out his remarks saying: "I have great respect for the investigators. Dr Kishan is one of the top young people coming up. But the study is problematic."

After describing his objections, he sums up:

"...they haven't convinced me that it's any advantage. I mean if it's the most convenient place for you to go and you think the doctor is good go for it but don't be convinced that you need to travel to a distant location so you can get this MRI guided treatment"

More about Mack Roach: https://www.ucsfhealth.org/providers/mack-roach
Quoting from the bio: [ He is a ] "global authority on treatment planning for prostate cancer. Roach served as senior author for the American College of Radiology's guidelines on the subject."

My RO has a view similar to Dr. Roach. I haven't completely made up my mind, except that I am certain that I know less than any of the oncologists I pay attention to on either side of this MRI-Linac debate.

@climateguy It's a challenge with newer devices, because better technical specs don't necessarily lead to better 5- or 10-year outcomes. And for obvious reasons, it takes a long time to collect that data.

PSMA-PET scans and proton-beam radiation are two examples of expensive technology that looks far superior on paper, but has failed so far to demonstrate improved longer-term outcomes for most patients (though that could change as more data becomes available).

@northoftheborder
I’m a little uncertain about what you are. saying

“ PSMA-PET scans and proton-beam radiation are two examples of expensive technology that looks far superior on paper, but has failed so far to demonstrate improved longer-term outcomes”

PSMA PET scans and proton radiation do two totally different things. PET scans aren’t a long-term procedure, You do them again as time goes on.

Did you mean to say Pluvicto and proton radiation?

@jeffmarc Sorry for the confusion. No, they're two separate examples of things that are technically superior, but have not (yet) been able to denonstrate improved medium-/long-term outcomes for most prostate-cancer patients.

@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.