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 jimbo12 @jimbo12

1. I am an outlier.
2. I feel bound, however, to comment.
3. I know NOTHING about medicine.
4. I am now 88.
5. In 2010 a bit of prostate cancer appeared on some test.
6. I was offered watchful waiting or radiation.
7. I chose a month's radiation.
8. I then forgot about the matter after the radiation. My PSA was ok.
9. In about 2021, my primary care doctor told me my PSA was high.
10. I took a test. No cancer.
11. They then offered a super expensive test. If I failed to show up, I would have to pay for the test.
12. They discovered some cancer in my lymph nodes.
13. I was offered watchful waiting, hormone therapy, or radiation.
14. I --in 100% ignorance -- chose hormone therapy.
15. It was Lupron.
16. Being really stupid, I had no idea that lack of testosterone would -- in my case -- take away my muscle mass.
17. I stopped Lupron in 2022 (after only 2 shots).
18. This is 2026. My previous muscle mass still has not returned (probably because I am so old).
19. For three years, I have not dared to walk even around my neighborhood.

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@jimbo12 That sounds really tough. Once a patient is in their 80s, a lot of practitioners will recommend against more-extreme measures like ADT or radiation, on the assumption that quality of life matters more than quantity of life at that stage.

The problem is that there's an idea that the same applies to younger prostate-cancer patients, which it most certainly does not. When I was diagnosed with stage-4 prostate cancer at age 56, I'd had potentially decades of life ahead of me, and wanted to fight — HARD — to try to win them back.

The moral is that there's not just one situation called "prostate cancer", and people (even doctors) who go around making blanket statements like "Prostate cancer is slow developing" or "You're more likely to die with prostate cancer than of it" are conflating too many different things.

With the aggressive prostate cancer that strikes young (in your 40s, 50s, or early 60s) and spreads fast, you're *far* more likely to die of it than with it, unless you take drastic measures quickly. That's what killed famous people like Johnny Ramone (55), Frank Zappa (52), Dan Fogelberg (56), Bill Bixby (59), James Michael Tyler (59), Gary Cooper (60), and Jack Layton (61). It's only in the past few years that this type of cancer has become manageable after it metastasises, so instead of just palliative care, we have the option of new treatments that can (in many cases) keep us alive for years while treating advanced prostate cancer as a chronic disease.

But the aggressive treatment that made sense for me with fast-moving PCa at age 56 might not have made sense for you with slow-moving PCa around age 82–3. It's not as likely that you had the extra strength and health reserves to tolerate the side-effects of ADT or radiation the way I did in my 50s, and I'm so sorry that things worked out badly for you. It's also ridiculous that you have to live in a society that will make you pay for an expensive-but-essential medical test if it comes out negative, but that's a separate thread. 😠

My point is just that we need to be clear that we're not always talking about the same thing when we say "prostate cancer". That's why we need to ignore the quacks on YouTube — they oversimplify to get followers and likes, because that's how they make money or advance their careers. (I don't mean the legit researchers, like some of the Mayo practitioners, who aren't afraid to talk about the nuances and complexity.)

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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).
==========

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@brianjarvis Yeah that 2012 decision didn't workout to well with men showing up 6 years later with much higher grades of cancer. Some doctors still prescribe to the 2012 mandate, and sadly so.

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Profile picture for quaddick @quaddick

@charlesprestridge
It was PCRI videos that convinced me to choose radiation, but it was a PCRI video about the Prostox tests that convinced me to get them. My Prostox test results put me in high risk for serious life long urinary complications from all forms of radiation treatment, so I'm getting surgery.

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@quaddick I think you are the first patient that I have heard from that tested high risk for all forms of radiation, even low dose IMRT. AI said, "Approximately 1%–2% of patients test as "High Risk" for all standard forms of radiation therapy, including lower-dose options." You are in that unlucky 1-2%, but it sure was a good thing that you checked on this.

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This is a lot on info to digest. Am 67, was diagnosed GL7 4+3 in 4 of 16 specimens, the rest were 3+3 and below, PSA 61 and rising, SVA. Was given the option of surgery, which I declined, or Radiation + 2 years Lupron. I opted Radiation, 5 week course, opted for Orgovyx and told my MedOnc I would do short term, 6 months to see how I handle the side effects and go from there.

From what I have gleaned, mostly on this site, is the ADT is the worst part of the treatment. I intend to continue working and while not "athletic" I am quite active, lots of walking, lots of exercise, lots of working in garden and lawns. For me, quality of life is the most important factor in my decisions.

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Profile picture for northoftheborder @northoftheborder

@jimbo12 That sounds really tough. Once a patient is in their 80s, a lot of practitioners will recommend against more-extreme measures like ADT or radiation, on the assumption that quality of life matters more than quantity of life at that stage.

The problem is that there's an idea that the same applies to younger prostate-cancer patients, which it most certainly does not. When I was diagnosed with stage-4 prostate cancer at age 56, I'd had potentially decades of life ahead of me, and wanted to fight — HARD — to try to win them back.

The moral is that there's not just one situation called "prostate cancer", and people (even doctors) who go around making blanket statements like "Prostate cancer is slow developing" or "You're more likely to die with prostate cancer than of it" are conflating too many different things.

With the aggressive prostate cancer that strikes young (in your 40s, 50s, or early 60s) and spreads fast, you're *far* more likely to die of it than with it, unless you take drastic measures quickly. That's what killed famous people like Johnny Ramone (55), Frank Zappa (52), Dan Fogelberg (56), Bill Bixby (59), James Michael Tyler (59), Gary Cooper (60), and Jack Layton (61). It's only in the past few years that this type of cancer has become manageable after it metastasises, so instead of just palliative care, we have the option of new treatments that can (in many cases) keep us alive for years while treating advanced prostate cancer as a chronic disease.

But the aggressive treatment that made sense for me with fast-moving PCa at age 56 might not have made sense for you with slow-moving PCa around age 82–3. It's not as likely that you had the extra strength and health reserves to tolerate the side-effects of ADT or radiation the way I did in my 50s, and I'm so sorry that things worked out badly for you. It's also ridiculous that you have to live in a society that will make you pay for an expensive-but-essential medical test if it comes out negative, but that's a separate thread. 😠

My point is just that we need to be clear that we're not always talking about the same thing when we say "prostate cancer". That's why we need to ignore the quacks on YouTube — they oversimplify to get followers and likes, because that's how they make money or advance their careers. (I don't mean the legit researchers, like some of the Mayo practitioners, who aren't afraid to talk about the nuances and complexity.)

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@northoftheborder

I'm inclined to believe that factors such as finances, a person's character, and their support network influence success in the fight against cancer.

Finances make various treatment methods available; if one doesn't work, another is used. Many poor people are doomed by definition because they don't have access to advanced treatments.

A person's character influences how they respond to help. A complex character makes it difficult to make informed decisions.

Finally, those around a person determine their motivation and determination. In some cases, if a person is poor but has friends and relatives with financial means, this also offers an additional chance.

Of course, these three factors, in various combinations, must be in harmony. For example, Steve Jobs had a lot of money and was surrounded by people who motivated him, but he didn't listen to doctors or his family.

In other words, these three factors must work together.

If we take celebrities as examples, there are many who had overly large egos and often didn't listen to anyone, so I don't think it's rational to use them as examples.

My uncle died of lung cancer. He lived for many years as an outcast, with no money, no connections to his family, and a nasty temper.

In my opinion, the fight against cancer begins with the three factors I listed above, followed by other, secondary factors, such as the doctors' competence, the body's response, and others.

And most importantly, primary factors (finances, character, support from those around you) are inextricably linked with secondary factors. If there's disharmony, everything will collapse. Of course, this isn't an absolute statement, but rather something that increases the likelihood of survival.

I've read many books about how famous athletes, writers, and others recovered from cancer, but they were saved more by the opportunities available to them. Think of that champion cyclist, I don't remember his name. I highly doubt he would have beaten cancer without the help of America's best doctors. Ordinary people don't have such opportunities!

I think my point is clear, right?

Thank you!

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Profile picture for denis76 @denis76

@northoftheborder

I'm inclined to believe that factors such as finances, a person's character, and their support network influence success in the fight against cancer.

Finances make various treatment methods available; if one doesn't work, another is used. Many poor people are doomed by definition because they don't have access to advanced treatments.

A person's character influences how they respond to help. A complex character makes it difficult to make informed decisions.

Finally, those around a person determine their motivation and determination. In some cases, if a person is poor but has friends and relatives with financial means, this also offers an additional chance.

Of course, these three factors, in various combinations, must be in harmony. For example, Steve Jobs had a lot of money and was surrounded by people who motivated him, but he didn't listen to doctors or his family.

In other words, these three factors must work together.

If we take celebrities as examples, there are many who had overly large egos and often didn't listen to anyone, so I don't think it's rational to use them as examples.

My uncle died of lung cancer. He lived for many years as an outcast, with no money, no connections to his family, and a nasty temper.

In my opinion, the fight against cancer begins with the three factors I listed above, followed by other, secondary factors, such as the doctors' competence, the body's response, and others.

And most importantly, primary factors (finances, character, support from those around you) are inextricably linked with secondary factors. If there's disharmony, everything will collapse. Of course, this isn't an absolute statement, but rather something that increases the likelihood of survival.

I've read many books about how famous athletes, writers, and others recovered from cancer, but they were saved more by the opportunities available to them. Think of that champion cyclist, I don't remember his name. I highly doubt he would have beaten cancer without the help of America's best doctors. Ordinary people don't have such opportunities!

I think my point is clear, right?

Thank you!

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@denis76 Yes, finances matter especially in the U.S., where the treatment you get depends on your financial means.

But even in countries with universal healthcare (every other rich country, and many/most middle-income ones), finances still have a secondary impact on your healthcare. Can you afford to take time off work? Do you have adequate food and shelter? Can you get to medical appointments? Can you travel to get better treatment in another city? How much stress is the struggle for daily existence putting on you? (Stress suppresses the immune system, and you need a healthy immune system to help suppress new cancer flareups.)

Ditto for your mention of support networks. Being in the middle of a loving circle of friends and family made a big difference for me, even when I was confined to bed and a wheelchair. I wouldn't want to fight cancer alone.

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Profile picture for copyman @copyman

Very interesting topic. Along with biopsies possibly spreading cancer could all the other tests like cat & pet scans contribute to cancer getting worse? Do these test benefits really outweigh the risk? Have many studies been done with people that have low to intermediate risk PC that decide to do nothing and their survival rate would be? Personally I think the survival rate would be close to treatment. The studies already show that radiation treatments will most likely cause another cancer years after treatment. I wonder if life expectancy would be close to the same avoiding biopsies, numerous scans, radiation treatments, etc,etc... Does anyone ever get "cured" from prostate cancer with current treatments or is it just keep getting PSA tests the rest of your life? And if/when cancer comes back start all over again with biopsies, more dangerous pet/ct scans and treatments. 50+ Years ago when there was no PSA or DRE tests done on men they most likely died with PC not from it living into their 80's. It's really hard to decide what is right once you have cancer and fall into the medical system.

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@copyman Well, thousands of men die every year worldwide from PCa - and that’s even WITH treatment. So how many men in years past were dying from undiagnosed PCa? Probably many but the cause of death would be something like ‘heart failure’ or ‘pneumonia’, etc…How many men didn’t even make it into their 80’s from a variety of diseases, including PCa?
There is statistical proof that life expectancy for males in the US is markedly higher than it was 100 years ago and a lot of that is diagnostic screening, testing and treatment.
Is it perfect? NO, and I get where you are coming from on an emotional level. Sometimes this all seems like a con, a remedy in search of a problem and I agree that net, net the results are sometimes discouraging.
It does make you wonder…but please think back to 2012 when routine PSA’s were dismissed as overkill and there was the idea that more men were being harmed than saved. We now know this is NOT the case, as evidenced by the surge in more advanced PCa cases…
It turns out that screening, indeed, does save lives…
Phil

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