14 Comments

While I respect Dr. Vorstman's work and perspective, I'd like to play a bit of devil's advocate and hear his rationale regarding the following from Cancer.net :

"Prostate cancer is the second leading cause of cancer death in men in the United States. It is estimated that 34,700 deaths from this disease will occur in the United States in 2023. In 2020, an estimated 375,304 people worldwide died from prostate cancer.

🤷‍♂️However, the death rate dropped by half from 1993 to 2013 as a result of advances in screening and treatment🤷‍♂️. .................................. If treatments are generally not effective, as he implies, what drove the death rate down by 50% from 1993 to 2013?

Expand full comment

Thank you for pointing out the profoundly unsettling numbers of false positives caused by PSA tests. The way that prostate cancer is current treated is often quite aggressive and the side effects of these treatments can be profound.

As an example, one of the medicines that's often used to treat prostate cancer can increase the risk of a man getting dementia by 26%, but this is almost never talked about. To me, this is really crazy and men should be treated better.

https://mattcook.substack.com/p/beware-this-treatment-for-prostate

Expand full comment

First to you, Martin (Gewirtz), and of course you, Howard, thank you, profoundly! My reason for signing up immediately for the newsletter aside from insight and what I considered equal if not MORE important, was, the platform newsletter provides to challenge status quo. Yes, Martin, erring on side of caution 'til science in is rational no matter how good the argument found in present research but to deny soothsayer is to obfuscate understanding choices which are ours despite the immense influence of the machine-AMA. We need more not less argument how effectual on ineffectual present research when we present before our provider. Vitriol here which I too may one day come to accept, summons remarks of Oncologist this week as part of National Survivors Cancer Week: PTSD found in those with cancer. Not hard to understand.

Expand full comment

Great job Howard - "Still running against the wind." - Bob Seger

> the history of medicine has recorded numerous examples of tests and treatments now abandoned - the prostate cancer arena is facing many serious concerns for veracity.

> tests and treatments can only be deemed safe and effective if they are supported by irrefutable and reproducible scientific data.

> John Ioannidis MD determined some time ago that most published research is false. Why? Because most published material is not founded on sound scientific principles and loaded with healthy doses of assumptions, opinions, judgements, approximations and beliefs. And, at times, blatant fabrications and conflicts-of-interest.

> arguments based on opinions, assumptions and beliefs only broadcast ignorance. Naysayers would do well to read the books "The Great Prostate Hoax" and "The Rise and Fall of the Prostate Cancer Scam."

> several of us - Horan, Ablin, Piana, Prasad and others have been examining the so-called data on which prostate cancer testing and treatment is founded. Where is the irrefutable and reproducible scientific evidence supporting that particular recommendation? read more https://lundberginstitute.org

> let's review just the PSA - even the word specific in prostate specific antigen is a fraud - The PSA has a false-positive rate of 78 percent because it is neither specific to the prostate or specific to prostate cancer; its so-called cut-off value of 0-4 n g/ml is an arbitrary and misleading metric; a PSA above 4 does not mean a diagnosis of prostate cancer; large prostates commonly generate high PSAs; the PSA value can be artificially raised or lowered without a cancer being present or progressing; the PSA cannot distinguish between aggressive and non-aggressive cancers; lowering the PSA does not lower a risk of cancer and, the subset of high-grade, aggressive and potentially deadly prostate cancers may produce little to no PSA and can go undetected.

> someone emailed me this morning concerned about their prostate MRI - he got 3 opinions - one from the local university, one from the Mayo and one from MD Anderson - all different and not reassuring in the least.

> sadly, the prostate cancer testing and treatment industry is a 32.7 billion dollar market for which there is no hard evidence that significant numbers of lives are being saved.

> the most redeeming feature of AS is that it slammed the brakes on the risky and non life-saving radical "treatments". However, we have no hard longterm data that AS saves significant numbers of lives. We need to discover a marker that detects only the 10-15% potentially lethal prostate cancers and then find a treatment that's SAFE and saves significant numbers of lives.

> challenge me with hard data.

cheers

bert

Expand full comment

For me, it was the PSMA PET scan and not an MRI or biopsy that provided what I wanted to know about my cancers status. Perhaps that imaging test will be used more soon.

Expand full comment
author

Martin,

Active Surveillance, like other areas in medicine, has many debates.

Should Gleason 6 be redefined as a noncancer?

Should there be a very low-risk diagnosis?

Should the transperineal approach be preferred over transrectal?

AS has evolved in the past decade and more. It will change again as AI and polygenic risk scoring is more widely adopted.

So I am glad to host Dr. Vorstman's commentary.

Also as a career journalist, I support free speech and the First Amendment. Personally, I like to hear contrary points of view.

Howard

Expand full comment

Howard,

Since you chose to reply to my comment (you invited readers to “sound off”) which you’re certainly free to do, I’ll respond.

- You state “AS has many debates.” Perhaps you meant that there are debates within the “prostate cancer” community - I know of no debates around AS - only from the writer you chose to showcase. The G6 debate has been ongoing for more than a decade; you chose to enter it and take a side for which you’ve clearly taken a position, for your own reasons. But it’s a PCa medical community debate - not an argument for or against Active Surveillance.

- I have not been privy to a debate about “very low- risk” diagnoses. Yes, NCCN and now AUA guidelines differ, but is there really a debate? And even if there is, it’s, again, not an argument for or against Active Surveillance.

- We both know, too well, about the debate around TPUS / TRUS bxes. Great divide between US and outside-US practices and opinions/studies. But, that aside, it’s not about a debate for or against Active Surveillance.

I believe we’re both in agreement that “AS has evolved in the past decade and more.” And, that it’s a positive that purportedly 60% of newly diagnosed men in the US (90% in MI, thanks to MUSIC) not to mention higher numbers in some European countries and the UK - are choosing AS as a management option; of course, calling into question what’s transpiring with the other 40%. In the US. Ergo, I’d agree with you that AS is still evolving here. And much of that - while patients are free to make their own choices - are also in the hands of doctors who, with or without guidelines, largely drive the patient-MD discourse upon delivering low to intermediate favorable diagnoses. Fear and anxiety, as we know, play a large part, and I believe (correct me if I’m wrong) we’re both on the same page insofar as to the “how” urologists deliver the news.

- So then we come to your last assertion that this is a first amendment issue. I know the first amendment well; rulings and precedents are set that it’s one’s first amendment rights to put out false information.

So this is where I’d ask you about what line you draw between being an advocate and a journalist. Surely, you regard yourself as an advocate as you were a co-founder of ASPI. But you also have been a life long journalist. As you must know, ASPI, as a non-profit, has a mission to provide information to men who are newly diagnosed or already on AS to empower them on their journey of shared informed decision-making with their medical teams. The Active Surveillor is read by many ASPI followers - in fact, it is readily available to those who visit the ASPI website. So, wearing your journalist hat and advocate and ASPI co-founder hat (you write often about your co-founding ASPI) do you believe that disseminating an interview with a “uro heretic,” as you describe Vorstman, is within ASPI’s mission? Or, more to the point, how are patients on AS served by reading a “free speech” rant that AS should not even exist?? Which hat are you wearing? Would you provide a first amendment platform too, let’s say for arguments sake, to someone like Marjorie Taylor Greene, if she argued against the HIM Act, now in front of Congress with lobbying efforts by ZERO and other policy advocates, if she called the issue of African American screening (or deficiencies therein) a great American hoax?

I’d posit that you have a choice as a journalist in how you present others’ opinions and first amendment rights to assert them just like broadcast and print news editors can pick and choose who to showcase, even when an individual may spout false information (again, their first amendment right) - weighing whether or not it’s in the public’s interest to do so (or, one can argue, whether or not it’s in THEIR best interests insofar as viewership and $ is concerned.)

Maybe your M.O. is to attract controversy, leading to more readers. Or maybe not. Only you know.

All that I know as an advocate who cares about patients and puts them #1, is that the first amendment opinions of an “Active Surveillance denier,” as I’d label Vorstman, does nothing to contribute to the thousands on AS, or advance it as an option for men. Even with your disclaimer, you’re giving him a platform damages the very cause you purport to have supported all these years and, I have no doubt, continue to support.

So, I’m flummoxed.

Expand full comment
author

Martin,

Dr. Vorstman, you and everyone else is entitled to their opinion.

I write this newsletter as a veteran journalist who happens to be a veteran AS patient.

I am a co-founder of ASPI but I do not present myself as a spokesman for ASPI. When appropriate, such as in the case of the Chodak Award and other ASPI awards in which I have served on a committee, I may mention my involvement.

For example, I just went to Grand Rapids, Michigan to present an ASPI award to the pioneering MUSIC program.

I was on the awards committee, nominated MUSIC and live close to Grand Rapids. So I presented the award for ASPI at those request of Mark Lichty, my co-founder. I think that's appropriate.

I don't say I speak for ASPI. In fact, I left the board because I had a book contract. But I also left because I wanted to leave the board and feel free to express my own opinions, which may differ from ASPI's views.

As a journalist and editor of The Active Surveillor, I see the value of sharing opinions I don't agree with it. In a democracy, we should make up our own minds.

I have had Dr. Vorstman, with whom I disagree. I also have had super-advocate Tony Crispino write an essay on his strong opposition to renaming Gleason 6 as a noncancer.

I did not censor either of them, but felt their views should be shared. Likewise, Jonathan Epstein, MD, has asked me to present his views against renaming Gleason 6.

I gladly shared the views of Epstein, Crispino, and Vorstman.

And I share the views of Martin Gewirtz.

Expand full comment
Jun 19, 2023·edited Jun 19, 2023

Howard,

- First, I want to reiterate that all my entries here are my own personal opinion and not that of any entity or organization. Strictly as a patient advocate.

- I feel as if you are obfuscating my main point around your airing an “opinion,” as you call it, which, by its very nature, is dangerous (and is, yes, protected by the first amendment) - the negation of Active Surveillance. And you’ve obfuscated my point through emphasizing your well-intentioned goals of airing a variety of viewpoints as a journalist. Perhaps I didn't make myself clear. Dr. Vorstman's views on many facets of PCa are not foreign to me. What IS new to me is his repudiation of Active Surveillance as a management option for PCa, and current screening protocols, as stated:

"HW: Should men skip PSAs?

BV: Absolutely.

HW: Should they not go on AS?

BV: Yes. Stop PSA testing and active surveillance."

My point is simple. I’m going to call out anyone who bellows for a halt to a management option for PCa that has been catching on for over 25 years: saving lives and saving men from unnecessary and over-treatments. That said, many men ARE STILL GETTING TREATED for Gleason 6s, some NOT EVEN BEING TOLD about the AS option. So when I read that a “doctor” is calling for a halt to AS, yes, I'm going to opine that, either you needn't have made the choice to give him a platform as a “first amendment” right - OR - if you still chose to give a “uro-heretic,” as you call him, a platform, then why not - side-by-side - ask another urologist (we know plenty) who would surely debunk his manipulation of data, his falsehoods, but most importantly, his negation of AS (yes, again ** ad nauseum*** all protected under the first amendment). This is done consistently through all kinds of media where balanced reporting is a time-honored practice - at least, in many circles.

Are scientists working on better screening tools than the PSA (pretty much regarded as a “check-engine light”) and more accurate biomarkers? They should be. In a perfect world, could we use optimum methods to track only those with intermediate to high grade disease which need treatment, leaving those men with low grade to die with their PCa than from it? Absolutely. BUT WE’RE NOT THERE YET. And this includes other cancers as well. Other diseases. From A to Z.

So, in the present moment, we have Active Surveillance burgeoning in Europe and elsewhere, and slower in the US. It’s saving lives. Right now - as I write this. We have an imperfect PSA test, which, at this moment, is the essence of the HIM act, currently before Congress and the focal point for many PCa support organizations in lobbying for its passage. Would Dr. Vorstman go up to the Hill to lobby against it? (I'm not asking him to answer that).

I’ll continue to advocate for patients and provide the most up-to-date information for them if and when I have it. When I don’t, I’ll point them elsewhere. And since I don’t provide medical advice, it’s not in my purview to advise anyone to even start or stop Active Surveillance. But I’ll sure point it out as an option that exists. What I WON’T do is provide false information and manipulated data which could lead anyone to negate Active Surveillance as an option. That would surely be unethical of me.

But far be it from me to judge anyone else’s ethics, or violation of the principle, “First Do No Harm.”

Expand full comment

Thank you Martin for your post. Glad to see your comments on this topic. Very well stated and most appreciated.

Expand full comment
author

Thanks, Steve. MUSIC is expanding. I see that it is moving into Florida and Virginia and maybe a few more spots.

Great question. Maybe the doctor can answer?

Expand full comment

Thank you Howard for sharing Dr. Vorstman's opinions.

I'm wondering what Vorstmsan would do if he was diagnosed with prostate cancer. Then aging it appears he doesn't believe in testing for prostate cancer.

It would be great if the "Music program" would expand to more states.

Expand full comment
Jun 17, 2023·edited Jun 18, 2023

I am a patient on AS for five years, a Board certified patient advocate, a Board member of Active Surveillance Patients International, a presenter at the AUA 2023 conference on behalf of patients voices vis a vis shared informed decision-making, and a writer on AS myself with a blog at

https://www.welcometoactivesurveillance. I think it’s highly unfortunate for The Active Surveillor to give Vorstman a platform for him to manipulate and falsely depict proven scientific data around screening and detection of PCa. I find no credibility whatsoever in his writing and I would caution all readers to do their own research and consult with their medical teams, including oncologists, while on Active Surveillance.

His rejection of Active Surveillance as a management protocol for men who choose it with low and favorable intermediate PCa (in his final paragraph) is flawed and should disqualify him as a reputable medical source for information and guidance.

The opinion expressed above is my own, and not representative of any entity or organization.

Expand full comment
Comment deleted
Expand full comment

absolutely agree rob - we can't just be continuing to accept the drivel about standard-of-care and continue to injure and not produce significant life extension. If a test or treatment can't be supported by irrefutable and reproducible evidence why would you cry and want the messenger crucified so the deception can be continued? That simply broadcasts ignorance. We have enough data now that shows that the current tests and treatments used in the prostate cancer arena are an absolute fraud. We need to drill down and find the tests and treatments that have a 85%+ reliability for detecting just the 10-15% killer cancers early enough for proven life-extension. We need an absolute game changer - we need to stop doing tests and treatments that are an embarrassment to the scientific community - cheers

Expand full comment