Dr. Bert Vorstman skeptical of any Pc treatment. What do you think?

Posted by quaddick @quaddick, 2 days ago

I watched this video 11 days prior to my prostatectomy. Gave me second thoughts briefly. However, after more research, I'm skeptical of his skepticism.
Dr. Vorstman's points:
- there’s no scientific evidence that the Prostate Cancer Awareness and Active Surveillance programs save significant numbers of lives

- countless men are injured in the process of prostate cancer testing and treatment without benefit

- the prostate cancer narrative exploits false hope and false promises by recycling misinformation

- the claims about the benefits of prostate cancer screening and treatment are untrue

A link to his video: https://www.youtube.com/watch
I went from no cancer detected to 2 tumors, one a 3+4 and a 3+3, and a decipher score of .85 in just a year. Seems to me pretty aggressive with a chance of metastasis. Doing nothing as he suggests seems reckless to me.
What do you guys think of his ideas?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for charlesprestridge @charlesprestridge

I am 6months into this journey, with much less knowledge/experience than most on this forum.

Some thoughts from my last six months. I am not for or against any of the different treatment options.

1. PCRI and other leading youtube/internet voices push active surveillance hard and dogmaticly. I feel there should be more balance in their videos and disclaimers. There are straight-forward active surveillance and treatment situations (on both ends of the spectrum). There are unknowns and variables that need to be presented for the patients in the middle.

2. I have seen so many videos stating Gleason 3+3 will never metastasize and will never need treatment. I think these types of statements should to be “qualified” on many if these videos.

3. PCRI and others push hard and dogmatically, there is no longer a reason for a patient to choose a RP (or almost never). Statements are continually made about there is no difference in outcome of RP vs other treatments and many times vs no treatment. Very few discuss most data/studies are based on 5-15 year patient death information. Information about the chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc. I know this information is presented in many different formats and studies. In our 5-20 minute youtube video life, it is almost dismissive of this type of information. The messages are slanted: Don’t ever undergo an RP. Select another treatment. If cancer comes back, take two years of hormone and do another treatment and you will still be “alive” in 10 years. The issues a patient may have to live thru are too minimized.

4. No guidelines/recommendations can cover the variation in persons and conditions. “Click-bait” videos by medical members are not optimum.

OP, I wish you the best in understanding your situation and determing treatment/AS options.

Jump to this post

@charlesprestridge For each of the points you bring up there are historical (sometimes decades-long) reasons why they’re being done. (I’ll cover them one-at-a-time.)

(1). The reason why active surveillance is being “pushed so hard and dogmatically” —> PSA testing has been around since the late 1980s. (I had my first PSA test in 2000.) In the early 2000s, so many men were opting for radical treatment for just a Gleason 6 (usually surgery) when it wasn’t medically necessary, that in 2012 the United States Preventive Services Task Force (USPSTF) recommended against routine prostate cancer screening thinking that stopping screening would stop overtreatment (assigning PSA screening a “D” recommendation: https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening-2012).

Prostate cancer has one of the lowest mortality rates of all cancers (< 12%; compare that to pancreatic cancer which is nearly 80%). The side/after-effects on quality-of-life from radical treatment are often worse than prostate cancer itself.

Many doctors (and insurance companies) followed that USPSTF recommendation, some did not.

That 2012 USPSTF administrative decision received much political pushback (when considering the “B” screening recommendation for breast cancer) , and in 2018 the USPSTF updated their prostate cancer screening recommendation to a “C” (https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening) that was accompanied by the “balance” that you see now —> that low-grade, localized disease (Gleason 6 and some Gleason 7s) can almost always be followed with active surveillance. You will rarely see active surveillance recommended for a 7(4+3), and never for a Gleason 8-10 (or for certain diagnoses with certain other risk factors).

(I was on active surveillance for over 8 years (2012-2021) and didn’t have treatment until my Gleason 6 progressed to a Gleason 7).
==========

REPLY
Profile picture for brianjarvis @brianjarvis

@charlesprestridge For each of the points you bring up there are historical (sometimes decades-long) reasons why they’re being done. (I’ll cover them one-at-a-time.)

(1). The reason why active surveillance is being “pushed so hard and dogmatically” —> PSA testing has been around since the late 1980s. (I had my first PSA test in 2000.) In the early 2000s, so many men were opting for radical treatment for just a Gleason 6 (usually surgery) when it wasn’t medically necessary, that in 2012 the United States Preventive Services Task Force (USPSTF) recommended against routine prostate cancer screening thinking that stopping screening would stop overtreatment (assigning PSA screening a “D” recommendation: https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening-2012).

Prostate cancer has one of the lowest mortality rates of all cancers (< 12%; compare that to pancreatic cancer which is nearly 80%). The side/after-effects on quality-of-life from radical treatment are often worse than prostate cancer itself.

Many doctors (and insurance companies) followed that USPSTF recommendation, some did not.

That 2012 USPSTF administrative decision received much political pushback (when considering the “B” screening recommendation for breast cancer) , and in 2018 the USPSTF updated their prostate cancer screening recommendation to a “C” (https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening) that was accompanied by the “balance” that you see now —> that low-grade, localized disease (Gleason 6 and some Gleason 7s) can almost always be followed with active surveillance. You will rarely see active surveillance recommended for a 7(4+3), and never for a Gleason 8-10 (or for certain diagnoses with certain other risk factors).

(I was on active surveillance for over 8 years (2012-2021) and didn’t have treatment until my Gleason 6 progressed to a Gleason 7).
==========

Jump to this post

@brianjarvis Thanks for the detailed explanation.

Can lowest risk Gleason 6 metastasize (person does not have genetic mutations BRCA1/BRCA2, Decipher test shows low risk, no cribriform, no IDC)?

In other words, if Gleason 6 keeps growing, can it eventually metastasize?

REPLY
Profile picture for charlesprestridge @charlesprestridge

I am 6months into this journey, with much less knowledge/experience than most on this forum.

Some thoughts from my last six months. I am not for or against any of the different treatment options.

1. PCRI and other leading youtube/internet voices push active surveillance hard and dogmaticly. I feel there should be more balance in their videos and disclaimers. There are straight-forward active surveillance and treatment situations (on both ends of the spectrum). There are unknowns and variables that need to be presented for the patients in the middle.

2. I have seen so many videos stating Gleason 3+3 will never metastasize and will never need treatment. I think these types of statements should to be “qualified” on many if these videos.

3. PCRI and others push hard and dogmatically, there is no longer a reason for a patient to choose a RP (or almost never). Statements are continually made about there is no difference in outcome of RP vs other treatments and many times vs no treatment. Very few discuss most data/studies are based on 5-15 year patient death information. Information about the chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc. I know this information is presented in many different formats and studies. In our 5-20 minute youtube video life, it is almost dismissive of this type of information. The messages are slanted: Don’t ever undergo an RP. Select another treatment. If cancer comes back, take two years of hormone and do another treatment and you will still be “alive” in 10 years. The issues a patient may have to live thru are too minimized.

4. No guidelines/recommendations can cover the variation in persons and conditions. “Click-bait” videos by medical members are not optimum.

OP, I wish you the best in understanding your situation and determing treatment/AS options.

Jump to this post

@charlesprestridge (2) When properly phrased, what will be said is that a “true” Gleason 6(3+3) is not a cancer and that it doesn’t metastasize.
> https://youtu.be/NV8QHzbgamI

The next question (of course) is what is a “true” 3+3 and not a 3+3 with something more insidious lurking unseen?

There are two ways to do this:
> One is to simply cut it out (prostatectomy) and then see if the pathology warranted the radical treatment. (What other disease, illness, or injury do we do that with - amputate first, and then figure out later whether or not we should have?)

> The other is with active surveillance. That’s where keeping active surveillance truly “active” comes in. As with any other disease, the goal is to only seek active treatment when treatment becomes medically necessary (otherwise we’d be amputating every appendage or organ with every scratch, bump or bruise). Prostate cancer is no different.

For active surveillance, In addition to regular Total PSA testing, also track:
> % Free PSA
> PSA Doubling Time
> PSA Velocity
> MRI results
> PSA Density
> Biopsy results
> Biomarker (genomic) tests (there are at least a dozen of them)
> Genetic (germline) tests
> Bone/CT/PSMA scan results
> (in addition to all the other standard annual health-related tests that are done.)

For a “true” Gleason 6, you’ll be on active surveillance for a long time (or eventually succumb to something else). If not a “true” Gleason 6, by tracking all those markers appropriately, any change in prostate cancer status will be detected in real-time. That delay also buys time to come up with a plan of treatment should a concerning change ever occur. Then if/when necessary, actively treat.

(In my case, I used that time to thoroughly research and selected Proton radiation as my choice of treatment.)
==========

REPLY
Profile picture for brianjarvis @brianjarvis

@charlesprestridge (2) When properly phrased, what will be said is that a “true” Gleason 6(3+3) is not a cancer and that it doesn’t metastasize.
> https://youtu.be/NV8QHzbgamI

The next question (of course) is what is a “true” 3+3 and not a 3+3 with something more insidious lurking unseen?

There are two ways to do this:
> One is to simply cut it out (prostatectomy) and then see if the pathology warranted the radical treatment. (What other disease, illness, or injury do we do that with - amputate first, and then figure out later whether or not we should have?)

> The other is with active surveillance. That’s where keeping active surveillance truly “active” comes in. As with any other disease, the goal is to only seek active treatment when treatment becomes medically necessary (otherwise we’d be amputating every appendage or organ with every scratch, bump or bruise). Prostate cancer is no different.

For active surveillance, In addition to regular Total PSA testing, also track:
> % Free PSA
> PSA Doubling Time
> PSA Velocity
> MRI results
> PSA Density
> Biopsy results
> Biomarker (genomic) tests (there are at least a dozen of them)
> Genetic (germline) tests
> Bone/CT/PSMA scan results
> (in addition to all the other standard annual health-related tests that are done.)

For a “true” Gleason 6, you’ll be on active surveillance for a long time (or eventually succumb to something else). If not a “true” Gleason 6, by tracking all those markers appropriately, any change in prostate cancer status will be detected in real-time. That delay also buys time to come up with a plan of treatment should a concerning change ever occur. Then if/when necessary, actively treat.

(In my case, I used that time to thoroughly research and selected Proton radiation as my choice of treatment.)
==========

Jump to this post

@brianjarvis Thanks again for the detailed explanation.

Someone with Gleason 6 needs a Urologist that aggressively pursues Active Surveillance. Not just a standard PSA and come back again in one year, the patient/Urologist need to follow an aggressive protocol like you listed above. Am I understanding?

REPLY
Profile picture for charlesprestridge @charlesprestridge

I am 6months into this journey, with much less knowledge/experience than most on this forum.

Some thoughts from my last six months. I am not for or against any of the different treatment options.

1. PCRI and other leading youtube/internet voices push active surveillance hard and dogmaticly. I feel there should be more balance in their videos and disclaimers. There are straight-forward active surveillance and treatment situations (on both ends of the spectrum). There are unknowns and variables that need to be presented for the patients in the middle.

2. I have seen so many videos stating Gleason 3+3 will never metastasize and will never need treatment. I think these types of statements should to be “qualified” on many if these videos.

3. PCRI and others push hard and dogmatically, there is no longer a reason for a patient to choose a RP (or almost never). Statements are continually made about there is no difference in outcome of RP vs other treatments and many times vs no treatment. Very few discuss most data/studies are based on 5-15 year patient death information. Information about the chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc. I know this information is presented in many different formats and studies. In our 5-20 minute youtube video life, it is almost dismissive of this type of information. The messages are slanted: Don’t ever undergo an RP. Select another treatment. If cancer comes back, take two years of hormone and do another treatment and you will still be “alive” in 10 years. The issues a patient may have to live thru are too minimized.

4. No guidelines/recommendations can cover the variation in persons and conditions. “Click-bait” videos by medical members are not optimum.

OP, I wish you the best in understanding your situation and determing treatment/AS options.

Jump to this post

@charlesprestridge (3) You are interpreting today’s statements correctly - “….dogmatically, there is no longer a reason for a patient to choose a RP (or almost never)…..”. Just as we are no longer leeching people as a medical cure, prostatectomies - which have been done for over 150 years - may no longer be medical necessary. (Medicine, science, and technology do progress and provide modern options.). There may be some exceptions (large tumor load, as just one example).

But, when you talk to most guys who choose RP, the rationale is usually, “I just want it out and forget about it.” That’s it.

“Statements are continually made about there being no statistical difference in outcome of RP vs radiation vs active surveillance,…” because more and more data are showing that. Here is the most recent one that I’m aware of (from a paper in 2023): https://www.nejm.org/doi/full/10.1056/NEJMoa2214122

True, there won’t be just a single study that shows all that information you mentioned - clinical trials are typically designed to narrowly test one hypothesis and exclude confounders. However, studies are out there regarding the “…chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc.”

Here for example are a couple of papers on the benefits of exercise during hormone therapy:
> https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+20

> https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

None of these are dismissive nor do they minimize other issues. The studies are simply narrowly focused on the specific purpose of their study. As part of self-advocacy and shared decision-making, you’re going to have to look for whatever you’re trying to find out. (You’ll need time; and that’s what active surveillance provides.)

What you refer to as a “5-20 minute youtube video life,” should instead be spent listening to prostate cancer presentations by the major (and minor) urology centers and the conferences and seminars they present and host, as well as the papers they publish. The most recent information is out there.

Yes, this all can be very overwhelming and confusing if you’ve only recently started this journey. Instead of “Don’t ever undergo an RP,” it’s “have a medically necessary reason to undergo an RP.”

As the paper I cited earlier concludes, with recurrence rates between surgery and radiation being statistically equivalent, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”) And active surveillance has come more and more into that discussion in recent years.
=============

REPLY

Anyone who is skeptical of medical screening for certain diseases in a certain population is entitled to his/her own opinion.
However, it would be best to keep this point of view to themselves, since they have no real expertise in the area - no matter their claims to the contrary.
As a non-political, real-life scenario, imagine someone like RFK Jr. - a lifelong vaccine skeptic - being made head of HHS…would you take medical advice for your children from him?🤔
Phil

REPLY
Profile picture for charlesprestridge @charlesprestridge

I am 6months into this journey, with much less knowledge/experience than most on this forum.

Some thoughts from my last six months. I am not for or against any of the different treatment options.

1. PCRI and other leading youtube/internet voices push active surveillance hard and dogmaticly. I feel there should be more balance in their videos and disclaimers. There are straight-forward active surveillance and treatment situations (on both ends of the spectrum). There are unknowns and variables that need to be presented for the patients in the middle.

2. I have seen so many videos stating Gleason 3+3 will never metastasize and will never need treatment. I think these types of statements should to be “qualified” on many if these videos.

3. PCRI and others push hard and dogmatically, there is no longer a reason for a patient to choose a RP (or almost never). Statements are continually made about there is no difference in outcome of RP vs other treatments and many times vs no treatment. Very few discuss most data/studies are based on 5-15 year patient death information. Information about the chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc. I know this information is presented in many different formats and studies. In our 5-20 minute youtube video life, it is almost dismissive of this type of information. The messages are slanted: Don’t ever undergo an RP. Select another treatment. If cancer comes back, take two years of hormone and do another treatment and you will still be “alive” in 10 years. The issues a patient may have to live thru are too minimized.

4. No guidelines/recommendations can cover the variation in persons and conditions. “Click-bait” videos by medical members are not optimum.

OP, I wish you the best in understanding your situation and determing treatment/AS options.

Jump to this post

@charlesprestridge (4) As for “No guidelines/recommendations can cover the variation in persons and conditions….” —> If you track all those markers….:
> Total PSA
> % Free PSA
> PSA Doubling Time
> PSA Velocity
> MRI results
> PSA Density
> Biopsy results
> Biomarker (genomic) tests (there are at least a dozen of them)
> Genetic (germline) tests
> Bone/CT/PSMA scan results
> And there are even more prostate cancer-related tests than those
> (in addition to all the other standard annual health-related tests that each of us should be having done.)

…..and use them along with the NCCN treatment guidelines, you’ll account for the variation in persons and conditions that today’s science and medicine has the ability to deal with. (Does that cover 100%? Probably not. But, what tests do?)

Agreed that “Click-bait” videos by medical members are not optimum.” But, literature and information produced by recognized urologic and cancer centers, organizations, and individuals should carry some weight.

Make use of every tool at your disposal to understand the full nature of your disease and to determine the appropriate treatment/AS options.
===============

REPLY
Profile picture for jeff1963 @jeff1963

@brianjarvis Thanks again for the detailed explanation.

Someone with Gleason 6 needs a Urologist that aggressively pursues Active Surveillance. Not just a standard PSA and come back again in one year, the patient/Urologist need to follow an aggressive protocol like you listed above. Am I understanding?

Jump to this post

@jeff1963 The answer is “optimally, yes.” But, what you’ll often find is that (generally) urologists, radiation oncologists, and medical oncologists will tell you everything you need to know….but not everything you’d want to know in order to have the best chance at an optimum outcome. (That probably applies to most medical treatments?)

When choosing active surveillance, most will recommend you come back in 6 to 12 months for a follow-up PSA. (But, you might want to request a follow-up PSA in 3-4 months until you’re sure of where you are; then you could stretch it out to 6+ months; and even have a confirmatory biopsy in 12 months.)

They’ll recommend PSA, MRI, and biopsy. You’ll have to request Free PSA, Biomarker (genomic) tests (there are at least a dozen of them), and Genetic (germline) tests. (Many of the others are calculations made by having the other tests.)

Prostate cancer diagnosis and treatment is one of self-advocacy and shared decision-making. The more someone can be better informed to be able to ask questions and have an active role in their treatment, the better.

REPLY

folks beware of absolutists of sny stripe as a retired physician i have read many studies both small and vast a key point to take away is the fact that scientific enquiry is dynamic ie as more information is available true scientists adjust imperfect but the best we have now to my pc i had pc gleasob 6 i was told this is benign and will never change well this turned out to be wrong and in fact approximately 5% of gleason 6 WILL progress to more severe disease ( according to my dr) which should result in treatment unless you want to shorten your life expectancy percentages dont matter if progression happens to you ie 100% is then your risk My treatment was mistakenly delayed because of such thinking please folks dont throw the baby out with the bathwater medicine and its practioners are trying their best to help society liver better and longer.

REPLY
Profile picture for jeff1963 @jeff1963

@brianjarvis Thanks for the detailed explanation.

Can lowest risk Gleason 6 metastasize (person does not have genetic mutations BRCA1/BRCA2, Decipher test shows low risk, no cribriform, no IDC)?

In other words, if Gleason 6 keeps growing, can it eventually metastasize?

Jump to this post

@jeff1963 It’s important to remember what a Gleason score is —> It’s one pathologist’s educated, expert opinion of what is seen under a microscope in the biopsied tissues.

But, being more an art than it is a science, what one pathologist sees as a 3+3, another might see as a 3+4. (Which is why it’s so important to get 2nd opinions on any test, biopsy, or scan that requires a doctor’s opinion or interpretation.)

With a 3+3, all of the cell structures that the pathologist can see under a microscope are all “3” cell structures. What happens with a 6(3+3) Gleason score, is that there may also be some sub-microscopic “4” cell structures that are too small to see, but in time grew large enough to be a visible cell structure in the biopsy samples taken. So, what was a 3+3 eventually becomes a 3+4 as those cells multiply. But, this is not a metastases (i.e., growth distant from the prostate). The “4” cell structures were always there; just too small to see.

In this PCRI presentation, Dr. Scholz mentions that if there is a metastasis of a Gleason 6, that in clinical trials those were shown to have been initially misdiagnosed:
> https://youtu.be/NV8QHzbgamI

REPLY
Please sign in or register to post a reply.