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 jeff Marchi @jeffmarc

I should’ve commented on your particular case.

With that high A decipher score You need to be careful.

One 3+3 and one 3+4 is not a major case yet. What percentage of Tumor was found in the 3+4 and what percentage of it was a 4?

That’s pretty critical to find out whether or not you have to do something immediately. If it’s only five or 10% of four, then you might be able to do active surveillance for a little while.

I’m not sure you’ve seen these videos. They discusses who is a good case for AS.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


Here is a video by Dr. Epstein discussing active surveillance and more

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@jeffmarc
Thanks, good comments as usual. Here's the percentage of cancer in my biopsy cores you asked about:
A. Prostate, lesion 1, biopsy:
- Adenocarcinoma of the prostate, Grade Group 2 (Gleason Score 3+4 = 7/10), in 3 of 3 cores, involving 45% of needle core
by volume
- Gleason pattern 4 comprises 15% of tumor volume
- Perineural invasion is identified.
B. Prostate, lesion 2, biopsy:
- Adenocarcinoma of the prostate, Grade Group 1 (Gleason Score 3+3 = 6/10), in 1 of 3 cores, involving 5% of needle core
by volume
- Perineural invasion is not identified.

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Profile picture for wwsmith @wwsmith

A 3+4 with a 0.85 Decipher is dangerous in that it can rapidly progress. I had a 3+4 case with a 0.81 Decipher and consulted both local doctors and MD Anderson (center of excellence) doctors in Houston. The result was aggressive treatment, 2 forms of radiation and 1 year of ADT. See my bio for more details.

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@wwsmith ,
Thanks, my initial decision after much research was to have radiation, but I got both of the Prostox tests and they came back high risk of late genitourinary complications, so I'm going with RALP instead.
Good luck on your own journey.

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Profile picture for northoftheborder @northoftheborder

The history behind this is that 30+ years ago, oncologists didn't have as many secondary diagnostic tools, so they'd overtreat any suspect PSA just to be safe.

Now they have a crazy-rich range of tools, from better biopsies to vastly-improved imaging to germline and epigenetic gene tests, so they can get a lot of confirmation that a slightly-elevated PSA actually *means* something before charging in with a scalpel or radiation. They can literally look inside your body and even peek into your DNA.

And even if treatment is necessary, both surgery and radiation have advanced significantly and have many fewer side-effects than they did in the 1990s.

People (doctors or otherwise) who argue against routine PSA screening still have their heads stuck in the era of fax machines, Nirvana, The X Files, Netscape Navigator, and the Clinton presidency.

Fortunately, prostate cancer diagnosis and treatment have progressed a long way since then, which is why I'm still alive to write this rant. 🙂

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@northoftheborder ,
"People (doctors or otherwise) who argue against routine PSA screening still have their heads stuck in the era of fax machines, Nirvana, The X Files, Netscape Navigator, and the Clinton presidency. "
LMAO

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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.

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@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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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?

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@jeff1963 ❝In other words, if Gleason 6 keeps growing, can it eventually metastasize?❞

Yes, but for "normal" prostate cancer, you'd see a rise in PSA first as a warning, and a then a rising Gleason score (e.g. 4+3) before that happened.

Not all prostate cancer is "normal," though, and that's why the 2012 recommendation against routine PSA screening turned out to be so tragically wrong.

Neuro-endocrine prostate cancer is very rare, but it can metastatise while expressing very little PSA (< 2.0, sometimes < 1.0).

Some prostate cancer can also be hyperactive (my word, not science's), escaping the prostate almost immediately, before there are any detectable tumours or enlargement in the prostate itself and setting up shop somewhere else.

The majority of prostate cancer cases (about 95%, I think) follow the well-known path of growing slowly in the prostate and taking years or decades to metastatise, if ever. But since prostate cancer is such a common disease, that still leaves thousands of people with de-novo advanced prostate cancer like mine, which might have been prevented with regular PSA screening.

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Doing research after my diagnosis I came over several MDs, and particularly urologists, who made similar claims. They ALL ran some private clinic offering « alternative » treatments. These ranged from the totally unproven (injecting chemotherapy agents directly into the affected areas in the prostate) to things like applying ciberknife to the whole gland irrespective of Gleason score.

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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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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
The problem is people do die of prostate cancer.

My father died of it in 2008 at 88 years old. The last few weeks were pretty terrible, He was on morphine and couldn’t communicate he was in so much pain.

I remember when he told me Lupron stopped working and there wasn’t anything else for treatment.

He started off with radiation as his initial treatment.

Some people do go into long-term remission. I don’t know about cure.

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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 While a biopsy can very rarely pull a few cancer cells out of the prostate and leave them behind, there's no evidence that they actually spread cancer (the isolated cells likely just die). Large studies have shown no negative impact on overall survival from biopsies, and often, a strong positive impact. This is the kind of misleading half-truth that we see so often online: fear-mongers tell about the first part, but skip the second (more important) one.

MRI and ultrasound have no impact on cancer. CT and PET scans use a minuscule amount of ionizing radiation, so there's a small chance (one in thousands) of developing some kind of new cancer, often relatively mild and easily treatable.

They don't order a CT or PET scan, though, unless you have a much bigger risk from something dangerous going undetected, so even then, there's a significant net benefit.

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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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