(Editor’s note: This topic is near and dear to me. So I went on a bit long. Again. Here’s a summary: Active Surveillance can carry physical (risks from transrectal biopsies), emotional distress (anxiety, depression, stress)and financial burden (insurance and job discrimination). Other countries like U.K. and Australia avoid this, especially with prebiopsy MRI scans. Also, biomarker tests can help about half of patients with low-risk prostate lesions avoid even being diagnosed with cancer.—HW)
By Howard Wolinsky
When I started on Active Surveillance in December 2010, the goal was to avoid unnecessary aggressive treatment carrying risks for side effects impacting quality of life, such as erectile dysfunction and urinary incontinence.
But I sense a new goal emerging at last in the U.S.: Avoid unnecessary diagnosis by avoiding unnecessary biopsies.
Australian genito-urinary (G-U) oncology opinion leader Declan Murphy, FRACS, FRCS, told me the U.S. has been slow to consider this approach. We still have a ways to go.
“The ‘new goal’ is one that relates to the diagnosis of prostate cancer in the first place. We want to avoid even finding cancers like yours at the outset, and thereby avoid the burden of AS. This is also not a new goal (although could argue it is new in the U.S., where there is still way too much over-diagnosis),” said Murphy, consultant urologist and director of GU Oncology at Peter MacCallum Cancer Centre, Melbourne, and Clinical Professor at the University of Melbourne.
(Dr. Declan Murphy, University of Melbourne)
A new era
Murphy and his colleagues led the way into this era back in 2018 with the PRECISION study in Nature in 2018, advocating greater use of Magnet Resonance Imaging scans. I remember discussing this research with my urologist and saying that even though I MRIs made me feel claustrophobic I thought this was the save of the future—and my doctor saying then that MRI wasn’t ready for prime time and biopsies were the “gold standard.”
European Association of Urologists Guidelines changed immediately after PRECISION, and in Australia the national helath plan began providing full reimbursement of MRIs for all men with suspicion of prostate cancer (a la PRECISION), and for all men on AS. “One of the key benefits of that strategy is a reduction in over-diagnosis of low-grade cancer,” Murphy said.
As usual, guidelines and urologists have lagged behind in the U.S. vs. Australia and Europe, as they have with Active Surveillance itself as well as transperineal biopsies—to the detriment of us patients.
Scott Eggener, MD, spells out the new approach in a proposal for a new study: “Modern screening and diagnostic protocols specify use of imaging and liquid biomarker tests to identify which patients with elevated PSA should proceed to biopsy. …and if only GG1 (Gleason 6) is expected, abiopsy is usually not done.” (I am on the advisory board for the new study, and Eggener put me on AS in 2010.)
Skipping biopsies?
It’s typically reported that liquid biopsies can help about 40% to nearly 60% of patients avoid biopsies. Check out IsoPSA, Stockholm 3 and MPS2. There are others as well. Some are billed as helping patients avoid not biopsies but also magnetic resonance imaging (MRI).
MRI itself is considered a biomarker and can rule out clinically significant cancers.
Still, MRIs have their issues, too. MRIs can be difficult for non-expert radiologists to read. MRIs are better at ferreting out more advanced lesions and often can overlook tiny low-risk cancers or higher-risk cancers that pose no problem at the present time. I consider that a feature not a bug. (Remember, I am offering an opinion as a patient; I can’t offer medical advice.)
Many doctors probably will recommend a systematic biopsy initially. (Critics call this a “random biopsy.”)
If patients with low-risk cancer bypass biopsies, they can avoid getting diagnosed with a harmless, lame Gleason 6, which some experts think should not be considered a cancer since they say a “pure” Gleason 6 looks like a cancer but doesn’t act like one. Doctors like Eggener and Laurence Klotz, MD, one of the developers of AS in the late ‘90s, have said repeatedly that Gleason 6 (virtually) never spreads and (virtually) never kills—in medicine, there are always exceptions.
We do want to avoid unnecessary biopsies, especially of the dominant transrectal variety—which some critics call “transfecal biopsies”— responsible for about 2,000 deaths from sepsis in the U.S. and an additional 1,000 internationally, according to Norwegian researchers—though AMerican urologists are skeptical.
Avoiding an unnecessary biopsy can help patients avoid unnecessary diagnosis and treatment of Gleason 6 cancers,
Matt Cooperberg, MD, MPH, of the University of California, San Franicsco, a leader in research on AS, said it remains unclear what to do with MRIs and other biomarkers, such the new blood and urine liquid biopsies in terms of managing biopsies and AS.
He noted in European Urology this summer: “The updated American Urological Association/American Society for Radiation Oncology guideline endorses the use of MRI in AS, but explicitly as an adjunct to rather than a replacement for biopsy-based surveillance.”
I asked Cooperberg how widely MRI is used to guide biopsies in the U.S. He told me he didn’t know and is trying to find that number. Experts agree it’s considerably less than 50% and is mainly emphasized in academic urology practices.
Yet, pre-biopsy MRIs are not exactly a hot ticket in the U.S.
The very successful MUSIC progran program in Michigan last year only had 50% participation in preopsies last year and participation is up to 58% thus far in 2024, Kevin Ginsburg, MD, co-director of the prostate program and a urologic oncologist at Wayne State in Detroit, told me. (Over 90% of patients with low-risk prostate go on AS in Michigan, 30 percentage more than the national average in the U.S.)
Peter Carroll, MD, MPH, told a meeting of Active Surveillance Patients International on Sept. 28. that he thought it was “ridiculous” that so many men going for biopsy without first undergoing a pre-biopsy MRI.
The role of insurers
I learned the hard way that once you get a positive biopsy—even for a “wimpy” Gleason 6 like mine—you are tagged a “cancer patient” for the rest of your life even though that cancer is something you can live with and won’t die from. Many insurance comanies still don’t buy that idea: A cancer is a cancer.
Contrast the U.S. and the U.K.: MRIs rule prostate care in Britannia.
Caroline Moore, MD,professor of urology at University College London, who led a consensus panel on AS funded by Movember, said protocols in the U.S. put many low-risk patients on AS “who may well have remained undiagnosed if they had been in the UK, as many men with a negative MRI don’t get a biopsy unless they have other worrying features. This means more men are able to avoid the risks from biopsies, such as discomfort and infections.”
Moore said the number of patients on AS has been on the decline in the U.K. thanks to pre-biopsy MRIs. It’s also dropping in institutions such as UCSF. (More on that soon.)
What? The Active Surveillor is dissing Active Surveillance? That’s right. A little.
AS, if appropriate, beats “definitive treatment” despite AS’potential physical, mental and financial side effects. But it would be even better if wcoulde avoid surveillance, which entails regular exams, PSAs, MRIs, and biopsies.
The burden of AS
Guys with more advanced prostate can carry a heavy load—with aggressive treatment, horrible side effects from Androgen Deprivation Therapy (such as memory loss, ED, osteoporosis, MIs, and the list goes on), metastses, and, rarely, death.
In contrast, AS must seem like a walk in the park, and in many ways it is. But we each have our own mountains to climb.
With AS, the burden can include potential for death from sepsis (rare but real) from transrectal biopsies; emotional distress (anxiety, depression, and stress); financial toxicity (job and insurance discrimination); cancer stigma from the diagnosis, and AS fatigue from all the tests, which can drive some patients to undergo “definitive” treatment,
My burden thus far in almost 14 years? Not more than I can handle. But I’ve had six (transrectal) biopsies, two MRIs (I get claustrophobic but can white knuckle my way through), more than 20 PSA tests and about as many urology visits.
I’ve been lucky. I have been mainly anxiety-free, but I had few days of distress after I first was diagnosed and saw a community urologist who laid my cancer risks on thick thick—urging me to undergo immediate surgery. He didn’t inform me I had very low-grade(Gleason 6/Grade. Group 1) prostate cancer that didn’t need treatment at all.
(A urologist friend, Gerald Chodak, MD, of the University of Chicago, relieved my tension. He told me that most men our age—then 63—have low-risk prostate cancer. He told me when he got his prostate cancer—he wanted to have what I had. He made me laugh. Unfortunately, Dr. Chodak died young from an aneurysm—never having been diagnosed with prostate cancer.)
I had a single microscopic core Gleason 6. I had a bad prostate day in December 2010 that continues to impact me to the present. My cancer was never seen again in additional biopsies—another wrinkle in my so-called journey. I could have missed being diagnosed and avoided this burden all together.
Dr. Paul Pinsky, NCI
On the subject of AS burdens, Paul Pinsky, PhD, MPH, chief of the Early Detection Research Branch of the National Cancer Institute, speaking for himself in a New England Journal of Medicine editorial on Sept. 25, said: “Active surveillance has its own costs and harms, and a substantial proportion of patients eventually choose curative therapy as a result of psychological and family pressures, even in the absence of evidence of disease progression (which is relatively infrequent). Furthermore, even for patients who continue to undergo active surveillance in the long term, important downsides include anxiety, health care system costs, and complications of the required periodic biopsies.”
He notes that evidence from randomized trials has shown that mortality from prostate cancer among patients undergoing AS, or even watchful waiting (less-aggressive surveillance), is relatively low and not significantly higher than that among patients who undergo initial curative treatment. “Therefore, a consensus is emerging that avoiding detection of [Grade Group 1) disease is a worthy goal of screening strategies.”
The role of the insurance industry in our burden
Why were pre-biopsy MRIs not available until recently in the U.S.? Likely, it was because insurers would not cover an MRI costing thousands of dollars in the U.S. unless the biopsy came first proving a cancer was present. Carroll said it has been getting increasingly easy for patients to have their insurers cover pre-biopsy MRIs.
Meanwhile, we patients are getting a peek behind the curatin how insurance industry actx as the behind-the-scenes wizards of so much of what is done or not done in medicine, including AS.
(The Wizard of Oz exposed as a man behind the curtain.)
Evidence is building in favor of the MRI-first strategy—this will help patients and likely insurers.
A major randomized Swedish/Norwegian study, GÖTEBORG-2, published September 25, 202 in New England Journal has shown “omitting biopsy in patients with negative MRI results eliminated more than half of diagnoses of clinically insignificant prostate cancer, and the associated risk of having incurable cancer diagnosed at screening or as interval cancer was very low.” They focused on men with a PSA level of 3 ng per milliliter or higher and performed only targeted biopsy of MRI-positive lesions to see if they would reduce the risk of detecting clinically insignificant prostate cancer while still enabling the detection of clinically significant prostate cancer at a curable stage.
Check out columnist Dr. Antonio Westphalen, MD, of the University of Washington, on this study:
(Editor’s note: MRI-first or prebiopsy MRI scans can save many patients from unnecessary diagnosis of low-risk Grade Group 1 prostate cancer. A new Swedish/Norwegian study, reviewed by columnist Antonio Westphalen, MD, a prostate radiology guru at the University of Washington. He told me the new study, which he told me is “probably one of the best studi…
But Jonas Hugosson, M.D., Ph.D., and his colleagues are cautious as we should all be about omitting biopsies from surveillance plans.
They said: “(P)rostate cancer is diagnosed by systematic biopsy in a substantial number of patients with negative MRI results, 19 to 28% of whom have clinically significant cancer, defined by an International Society of Urological Pathology (ISUP) grade of 2 (Gleason 3+4) or higher.”
They adddc: “Whether it is safe to delay diagnosis in this group is not known. Will the cancer progress and later become visible on MRI but still be at a curable stage, or will it be diagnosed too late for cure?”
Let’s flip their findings—72-81% of us who are biopsied have clinically insignificant cancers. Yet we get pulled into AS and all that means.
So researchers suggest that if your PSA has been rising and your doctor is recommending a biopsy, try to get a pre-biopsy MRI before going down the biopsy highway—and make it a targeted biopsy. (And I’ll add that you ought to try to make it a transperineal biopsy, if possible, to avoid risk of sepsis and other infections.)
We patients and our doctors face a balancing act in determining how to best use the tools we have—PSAs, biomarkers, MRIs, biopsies, and now AI.
Overdiagnosis and overtreatment of prostate cancer are major concerns. But on the other side of the coin, underdiagnosis and undertreatment of advanced cancers remain a threat.
I have been involved in a campaign led by Eggener to rename Gleason 6/GG 1 lesions as a noncancer to try to reduce the psychological and financial burden of being diagnosed low-risk prostate “cancer.”
Murphy predicts that our campaign inevitably will fail. Entrenched interests, especially the majority of pathologists, about half of urologists, uncertain patients, and insurance companies will shut us down.
He added: ”Instead of trying to ‘rename’ GG1 cancer, the U.S.should just use MRI and not do a biopsy if the scan is normal. Never make the diagnosis in the first place!
“That has been routine care in the U.K. and Australia for very many years [even before 2018 patients were self-funding mpMRI, costing only USD$300, a fraction of the cost in the U.S]. But in the U.S., the vast majority of men have a prostate biopsy (TRUS), just because PSA is up a bit, [and] no MRI.”
ProtecT researchers to speak Oct. 26 to ASPI
By Howard Wolinsky
Active Surveillance Patients International (ASPI) is hosting a webinar at noon EST, Saturday Oct. 26, featuring Drs. Freddie Hamdy of Oxford University, and Jenny Donovan of the University of Bristol in England, who led the famed Protect Trial in the United Kingdom that showed that Active Surveillance (they call it Active Management) is as safe and effective as radical prostetectomy and radiation therapy.
ASPI recently gave its “special” award to recognize the researchers, their team, and the 1,634 patients who made this study possible over the past 25 years.
Travel writer Steves describes his cancer journey and why he chose the ‘ectomy route’
By Howard Wolinsky
Travel writer Rick Steves has filled in some of the blanks on his decision to undergo a prostatectomy even though his urologist told him he had “the good kind” of prostate cancer,
He has gone public with the fact that he likely had a unfavorable intermediate-risk prostate cancer and a PSA of 55. (FYI, the highest PSA level ever recorded was 23,162 ng/mL in a prostate cancer patient.)
Sounds like he made the right decision. Congrats to Steves on making it successfully through surgery and for finally communicating his experience so clearly in the end. I wish more celebs with prostate cancer did such a good job—especially any on Active Surveillance.
In August, Steves announced he had been diagnosed with what his doctor called “the good kind” of priostate cancer. Yet many of us were puzzled when he said he planned to undergo a radical prostatectomy. The “good kind” to most of us usually means no surgery or radiation.
Inquiring minds wanted to know why he didn’t choose Active Surveillance (AS). So we asked him then. I especially wanted to know his PSA, Gleason score and whether he was offered surveillance.
I felt that Steves was a friend, whose videos and books have guided me on my own non-cancer journeys. I wanted to support him on his new cancer journey.
He spells out this trip on his Facebook pageTurns out he had a Gleason score of 4—don’t know but likely 3+4 —and a PSA of 55—facts not previously disclosed.
He wrote: “I promised you an update when I shared this news back in August — and I’m happy to say that I’m home now after successful surgery and a night in the hospital. (Packing light for my homecoming, I left my prostate there.) Since I was first diagnosed, I’ve thought of cancer as the latest adventure in a lifetime of travels — and like always, I’m excited to share a trip report with you.”
He added: “Psychologically, I was inclined to embrace the “ectomy” route — cut it out. And in my case (where the cancer is, how it’s acting, and my willingness to deal with — or live with — the side effects), it seemed surgery was my best option. After talking with my doctor and carefully considering each treatment strategy, I chose to undergo a robotic radical prostatectomy.”
If I had been in his boots, I would have done the same thing. I appreciate his positive ‘tude and humor that can send patients into depression. This attitude will help him in his recovery.
Steves writes about his prostatectomy: “I wake up feeling great, chatty, and making jokes I think are clever… clearly on some serious medicine. Thankfully, my doctor has a good report: Surgery went well, there was no sign of any spread, and the cancer seems to have been embedded deep in my prostate, which is now at the lab.
“Before the surgery, I had two visions of my cancerous prostate: a small apple with an invisible rot at its core and an old dandelion with missing spores. My wish was the apple, and that’s what I got. But we won’t really know how “it went’ until the lab reports are in. And that’s when I hope to hear the words ‘cancer-free.’”
Steve adds: I’m making a point to celebrate the vibrancy that fills my world... to give thanks for everything that works well in my body... and to meditate on how communities, technologies, and livable environments that we enjoy are not accidental — they happen when good people care and do good things.
“I’m looking forward to many more years of happy travels — and, of course, I’ll be sure to bring you along!”
“Howard, Always look forward to hearing from you about the latest prostate news. Your efforts are appreciated by those of us in the PC family!” Richard Dixon
Thanks, Richard.
“AS25”: Jan. 4 for paid subscribers to TheActiveSurveillor.com
TheActiveSurveillor.com newsletter is planning its first event for paid subscribers only: “Active Surveillance ‘25”. The session featuring experts on genomic and AI and prostate cancer, will be held at noon Eastern time, Saturday, January 4, 2025. Subscribe or re-up below before rates increase in late December. I’ll resend registration links to paid subscribers again soon. If you can’t afford a subscription, contact me privately and we’ll work something out.
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Lifting the 'burden of AS' with prebiopsy MRIs & biomarkers to avoid unnecessary biopsies, diagnoses, treatment
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(Editor’s note: This topic is near and dear to me. So I went on a bit long. Again. Here’s a summary: Active Surveillance can carry physical (risks from transrectal biopsies), emotional distress (anxiety, depression, stress)and financial burden (insurance and job discrimination). Other countries like U.K. and Australia avoid this, especially with prebiopsy MRI scans. Also, biomarker tests can help about half of patients with low-risk prostate lesions avoid even being diagnosed with cancer.—HW)
By Howard Wolinsky
When I started on Active Surveillance in December 2010, the goal was to avoid unnecessary aggressive treatment carrying risks for side effects impacting quality of life, such as erectile dysfunction and urinary incontinence.
But I sense a new goal emerging at last in the U.S.: Avoid unnecessary diagnosis by avoiding unnecessary biopsies.
Australian genito-urinary (G-U) oncology opinion leader Declan Murphy, FRACS, FRCS, told me the U.S. has been slow to consider this approach. We still have a ways to go.
“The ‘new goal’ is one that relates to the diagnosis of prostate cancer in the first place. We want to avoid even finding cancers like yours at the outset, and thereby avoid the burden of AS. This is also not a new goal (although could argue it is new in the U.S., where there is still way too much over-diagnosis),” said Murphy, consultant urologist and director of GU Oncology at Peter MacCallum Cancer Centre, Melbourne, and Clinical Professor at the University of Melbourne.
(Dr. Declan Murphy, University of Melbourne)
A new era
Murphy and his colleagues led the way into this era back in 2018 with the PRECISION study in Nature in 2018, advocating greater use of Magnet Resonance Imaging scans. I remember discussing this research with my urologist and saying that even though I MRIs made me feel claustrophobic I thought this was the save of the future—and my doctor saying then that MRI wasn’t ready for prime time and biopsies were the “gold standard.”
European Association of Urologists Guidelines changed immediately after PRECISION, and in Australia the national helath plan began providing full reimbursement of MRIs for all men with suspicion of prostate cancer (a la PRECISION), and for all men on AS. “One of the key benefits of that strategy is a reduction in over-diagnosis of low-grade cancer,” Murphy said.
As usual, guidelines and urologists have lagged behind in the U.S. vs. Australia and Europe, as they have with Active Surveillance itself as well as transperineal biopsies—to the detriment of us patients.
Scott Eggener, MD, spells out the new approach in a proposal for a new study: “Modern screening and diagnostic protocols specify use of imaging and liquid biomarker tests to identify which patients with elevated PSA should proceed to biopsy. …and if only GG1 (Gleason 6) is expected, a biopsy is usually not done.” (I am on the advisory board for the new study, and Eggener put me on AS in 2010.)
Skipping biopsies?
It’s typically reported that liquid biopsies can help about 40% to nearly 60% of patients avoid biopsies. Check out IsoPSA, Stockholm 3 and MPS2. There are others as well. Some are billed as helping patients avoid not biopsies but also magnetic resonance imaging (MRI).
MRI itself is considered a biomarker and can rule out clinically significant cancers.
Still, MRIs have their issues, too. MRIs can be difficult for non-expert radiologists to read. MRIs are better at ferreting out more advanced lesions and often can overlook tiny low-risk cancers or higher-risk cancers that pose no problem at the present time. I consider that a feature not a bug. (Remember, I am offering an opinion as a patient; I can’t offer medical advice.)
Many doctors probably will recommend a systematic biopsy initially. (Critics call this a “random biopsy.”)
If patients with low-risk cancer bypass biopsies, they can avoid getting diagnosed with a harmless, lame Gleason 6, which some experts think should not be considered a cancer since they say a “pure” Gleason 6 looks like a cancer but doesn’t act like one. Doctors like Eggener and Laurence Klotz, MD, one of the developers of AS in the late ‘90s, have said repeatedly that Gleason 6 (virtually) never spreads and (virtually) never kills—in medicine, there are always exceptions.
(Check out this article in the Journal of Clinical Oncology calling for redefining Gleason 6 as a non-cancer: https://www.nejm.org/doi/full/10.1056/NEJMoa2406050 I am a co-author with Eggener et al.)
We do want to avoid unnecessary biopsies, especially of the dominant transrectal variety—which some critics call “transfecal biopsies”— responsible for about 2,000 deaths from sepsis in the U.S. and an additional 1,000 internationally, according to Norwegian researchers—though AMerican urologists are skeptical.
Avoiding an unnecessary biopsy can help patients avoid unnecessary diagnosis and treatment of Gleason 6 cancers,
Matt Cooperberg, MD, MPH, of the University of California, San Franicsco, a leader in research on AS, said it remains unclear what to do with MRIs and other biomarkers, such the new blood and urine liquid biopsies in terms of managing biopsies and AS.
He noted in European Urology this summer: “The updated American Urological Association/American Society for Radiation Oncology guideline endorses the use of MRI in AS, but explicitly as an adjunct to rather than a replacement for biopsy-based surveillance.”
I asked Cooperberg how widely MRI is used to guide biopsies in the U.S. He told me he didn’t know and is trying to find that number. Experts agree it’s considerably less than 50% and is mainly emphasized in academic urology practices.
Yet, pre-biopsy MRIs are not exactly a hot ticket in the U.S.
The very successful MUSIC progran program in Michigan last year only had 50% participation in preopsies last year and participation is up to 58% thus far in 2024, Kevin Ginsburg, MD, co-director of the prostate program and a urologic oncologist at Wayne State in Detroit, told me. (Over 90% of patients with low-risk prostate go on AS in Michigan, 30 percentage more than the national average in the U.S.)
Peter Carroll, MD, MPH, told a meeting of Active Surveillance Patients International on Sept. 28. that he thought it was “ridiculous” that so many men going for biopsy without first undergoing a pre-biopsy MRI.
The role of insurers
I learned the hard way that once you get a positive biopsy—even for a “wimpy” Gleason 6 like mine—you are tagged a “cancer patient” for the rest of your life even though that cancer is something you can live with and won’t die from. Many insurance comanies still don’t buy that idea: A cancer is a cancer.
Contrast the U.S. and the U.K.: MRIs rule prostate care in Britannia.
Caroline Moore, MD, professor of urology at University College London, who led a consensus panel on AS funded by Movember, said protocols in the U.S. put many low-risk patients on AS “who may well have remained undiagnosed if they had been in the UK, as many men with a negative MRI don’t get a biopsy unless they have other worrying features. This means more men are able to avoid the risks from biopsies, such as discomfort and infections.”
Moore said the number of patients on AS has been on the decline in the U.K. thanks to pre-biopsy MRIs. It’s also dropping in institutions such as UCSF. (More on that soon.)
What? The Active Surveillor is dissing Active Surveillance? That’s right. A little.
AS, if appropriate, beats “definitive treatment” despite AS’potential physical, mental and financial side effects. But it would be even better if wcoulde avoid surveillance, which entails regular exams, PSAs, MRIs, and biopsies.
The burden of AS
Guys with more advanced prostate can carry a heavy load—with aggressive treatment, horrible side effects from Androgen Deprivation Therapy (such as memory loss, ED, osteoporosis, MIs, and the list goes on), metastses, and, rarely, death.
In contrast, AS must seem like a walk in the park, and in many ways it is. But we each have our own mountains to climb.
With AS, the burden can include potential for death from sepsis (rare but real) from transrectal biopsies; emotional distress (anxiety, depression, and stress); financial toxicity (job and insurance discrimination); cancer stigma from the diagnosis, and AS fatigue from all the tests, which can drive some patients to undergo “definitive” treatment,
My burden thus far in almost 14 years? Not more than I can handle. But I’ve had six (transrectal) biopsies, two MRIs (I get claustrophobic but can white knuckle my way through), more than 20 PSA tests and about as many urology visits.
I’ve been lucky. I have been mainly anxiety-free, but I had few days of distress after I first was diagnosed and saw a community urologist who laid my cancer risks on thick thick—urging me to undergo immediate surgery. He didn’t inform me I had very low-grade(Gleason 6/Grade. Group 1) prostate cancer that didn’t need treatment at all.
(A urologist friend, Gerald Chodak, MD, of the University of Chicago, relieved my tension. He told me that most men our age—then 63—have low-risk prostate cancer. He told me when he got his prostate cancer—he wanted to have what I had. He made me laugh. Unfortunately, Dr. Chodak died young from an aneurysm—never having been diagnosed with prostate cancer.)
I had a single microscopic core Gleason 6. I had a bad prostate day in December 2010 that continues to impact me to the present. My cancer was never seen again in additional biopsies—another wrinkle in my so-called journey. I could have missed being diagnosed and avoided this burden all together.
Dr. Paul Pinsky, NCI
On the subject of AS burdens, Paul Pinsky, PhD, MPH, chief of the Early Detection Research Branch of the National Cancer Institute, speaking for himself in a New England Journal of Medicine editorial on Sept. 25, said: “Active surveillance has its own costs and harms, and a substantial proportion of patients eventually choose curative therapy as a result of psychological and family pressures, even in the absence of evidence of disease progression (which is relatively infrequent). Furthermore, even for patients who continue to undergo active surveillance in the long term, important downsides include anxiety, health care system costs, and complications of the required periodic biopsies.”
He notes that evidence from randomized trials has shown that mortality from prostate cancer among patients undergoing AS, or even watchful waiting (less-aggressive surveillance), is relatively low and not significantly higher than that among patients who undergo initial curative treatment. “Therefore, a consensus is emerging that avoiding detection of [Grade Group 1) disease is a worthy goal of screening strategies.”
The role of the insurance industry in our burden
Why were pre-biopsy MRIs not available until recently in the U.S.? Likely, it was because insurers would not cover an MRI costing thousands of dollars in the U.S. unless the biopsy came first proving a cancer was present. Carroll said it has been getting increasingly easy for patients to have their insurers cover pre-biopsy MRIs.
Meanwhile, we patients are getting a peek behind the curatin how insurance industry actx as the behind-the-scenes wizards of so much of what is done or not done in medicine, including AS.
(The Wizard of Oz exposed as a man behind the curtain.)
Evidence is building in favor of the MRI-first strategy—this will help patients and likely insurers.
A major randomized Swedish/Norwegian study, GÖTEBORG-2, published September 25, 202 in New England Journal has shown “omitting biopsy in patients with negative MRI results eliminated more than half of diagnoses of clinically insignificant prostate cancer, and the associated risk of having incurable cancer diagnosed at screening or as interval cancer was very low.” They focused on men with a PSA level of 3 ng per milliliter or higher and performed only targeted biopsy of MRI-positive lesions to see if they would reduce the risk of detecting clinically insignificant prostate cancer while still enabling the detection of clinically significant prostate cancer at a curable stage.
Check out columnist Dr. Antonio Westphalen, MD, of the University of Washington, on this study:
Prebiopsy MRIs get strong support in new Scandinavian study
(Editor’s note: MRI-first or prebiopsy MRI scans can save many patients from unnecessary diagnosis of low-risk Grade Group 1 prostate cancer. A new Swedish/Norwegian study, reviewed by columnist Antonio Westphalen, MD, a prostate radiology guru at the University of Washington. He told me the new study, which he told me is “probably one of the best studi…
But Jonas Hugosson, M.D., Ph.D., and his colleagues are cautious as we should all be about omitting biopsies from surveillance plans.
They said: “(P)rostate cancer is diagnosed by systematic biopsy in a substantial number of patients with negative MRI results, 19 to 28% of whom have clinically significant cancer, defined by an International Society of Urological Pathology (ISUP) grade of 2 (Gleason 3+4) or higher.”
They adddc: “Whether it is safe to delay diagnosis in this group is not known. Will the cancer progress and later become visible on MRI but still be at a curable stage, or will it be diagnosed too late for cure?”
Let’s flip their findings—72-81% of us who are biopsied have clinically insignificant cancers. Yet we get pulled into AS and all that means.
So researchers suggest that if your PSA has been rising and your doctor is recommending a biopsy, try to get a pre-biopsy MRI before going down the biopsy highway—and make it a targeted biopsy. (And I’ll add that you ought to try to make it a transperineal biopsy, if possible, to avoid risk of sepsis and other infections.)
We patients and our doctors face a balancing act in determining how to best use the tools we have—PSAs, biomarkers, MRIs, biopsies, and now AI.
Overdiagnosis and overtreatment of prostate cancer are major concerns. But on the other side of the coin, underdiagnosis and undertreatment of advanced cancers remain a threat.
I have been involved in a campaign led by Eggener to rename Gleason 6/GG 1 lesions as a noncancer to try to reduce the psychological and financial burden of being diagnosed low-risk prostate “cancer.”
Murphy predicts that our campaign inevitably will fail. Entrenched interests, especially the majority of pathologists, about half of urologists, uncertain patients, and insurance companies will shut us down.
He added: ”Instead of trying to ‘rename’ GG1 cancer, the U.S.should just use MRI and not do a biopsy if the scan is normal. Never make the diagnosis in the first place!
“That has been routine care in the U.K. and Australia for very many years [even before 2018 patients were self-funding mpMRI, costing only USD$300, a fraction of the cost in the U.S]. But in the U.S., the vast majority of men have a prostate biopsy (TRUS), just because PSA is up a bit, [and] no MRI.”
ProtecT researchers to speak Oct. 26 to ASPI
By Howard Wolinsky
Active Surveillance Patients International (ASPI) is hosting a webinar at noon EST, Saturday Oct. 26, featuring Drs. Freddie Hamdy of Oxford University, and Jenny Donovan of the University of Bristol in England, who led the famed Protect Trial in the United Kingdom that showed that Active Surveillance (they call it Active Management) is as safe and effective as radical prostetectomy and radiation therapy.
REGISTER HERE: https://zoom.us/meeting/register/tJclduCoqjIqHd0sFUmKUi1jduD28vcbvhm6
(Dr. Freddie Hamdy and Dr. Jenny Donovan.)
ASPI recently gave its “special” award to recognize the researchers, their team, and the 1,634 patients who made this study possible over the past 25 years.
Travel writer Steves describes his cancer journey and why he chose the ‘ectomy route’
By Howard Wolinsky
Travel writer Rick Steves has filled in some of the blanks on his decision to undergo a prostatectomy even though his urologist told him he had “the good kind” of prostate cancer,
He has gone public with the fact that he likely had a unfavorable intermediate-risk prostate cancer and a PSA of 55. (FYI, the highest PSA level ever recorded was 23,162 ng/mL in a prostate cancer patient.)
Sounds like he made the right decision. Congrats to Steves on making it successfully through surgery and for finally communicating his experience so clearly in the end. I wish more celebs with prostate cancer did such a good job—especially any on Active Surveillance.
In August, Steves announced he had been diagnosed with what his doctor called “the good kind” of priostate cancer. Yet many of us were puzzled when he said he planned to undergo a radical prostatectomy. The “good kind” to most of us usually means no surgery or radiation.
Inquiring minds wanted to know why he didn’t choose Active Surveillance (AS). So we asked him then. I especially wanted to know his PSA, Gleason score and whether he was offered surveillance.
I felt that Steves was a friend, whose videos and books have guided me on my own non-cancer journeys. I wanted to support him on his new cancer journey.
He spells out this trip on his Facebook page Turns out he had a Gleason score of 4—don’t know but likely 3+4 —and a PSA of 55—facts not previously disclosed.
He wrote: “I promised you an update when I shared this news back in August — and I’m happy to say that I’m home now after successful surgery and a night in the hospital. (Packing light for my homecoming, I left my prostate there.) Since I was first diagnosed, I’ve thought of cancer as the latest adventure in a lifetime of travels — and like always, I’m excited to share a trip report with you.”
He added: “Psychologically, I was inclined to embrace the “ectomy” route — cut it out. And in my case (where the cancer is, how it’s acting, and my willingness to deal with — or live with — the side effects), it seemed surgery was my best option. After talking with my doctor and carefully considering each treatment strategy, I chose to undergo a robotic radical prostatectomy.”
If I had been in his boots, I would have done the same thing. I appreciate his positive ‘tude and humor that can send patients into depression. This attitude will help him in his recovery.
Steves writes about his prostatectomy: “I wake up feeling great, chatty, and making jokes I think are clever… clearly on some serious medicine. Thankfully, my doctor has a good report: Surgery went well, there was no sign of any spread, and the cancer seems to have been embedded deep in my prostate, which is now at the lab.
“Before the surgery, I had two visions of my cancerous prostate: a small apple with an invisible rot at its core and an old dandelion with missing spores. My wish was the apple, and that’s what I got. But we won’t really know how “it went’ until the lab reports are in. And that’s when I hope to hear the words ‘cancer-free.’”
Steve adds: I’m making a point to celebrate the vibrancy that fills my world... to give thanks for everything that works well in my body... and to meditate on how communities, technologies, and livable environments that we enjoy are not accidental — they happen when good people care and do good things.
“I’m looking forward to many more years of happy travels — and, of course, I’ll be sure to bring you along!”
Rick Steves reveals he has "good kind" of prostate cancer. But if that's so, why is he undergoing prostate surgery next month?
By Howard Wolinsky
Unsolicited testimonial
“Howard, Always look forward to hearing from you about the latest prostate news. Your efforts are appreciated by those of us in the PC family!” Richard Dixon
Thanks, Richard.
“AS25”: Jan. 4 for paid subscribers to TheActiveSurveillor.com
TheActiveSurveillor.com newsletter is planning its first event for paid subscribers only: “Active Surveillance ‘25”. The session featuring experts on genomic and AI and prostate cancer, will be held at noon Eastern time, Saturday, January 4, 2025. Subscribe or re-up below before rates increase in late December. I’ll resend registration links to paid subscribers again soon. If you can’t afford a subscription, contact me privately and we’ll work something out.
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