News from ASCO meeting: New blood test finds more metastatic cancers, reduces overdiagnosis/overtreatment low-risk. Also, debate on low-risk GL6 goes to status quo.
(Editor’s note: Join ASPI for a webinar, “How AI will Prevent Overdiagnosis and Overtreatment of Prostate Cancer” at noon-1:30 pm Eastern, Saturday, February 24. There will be top panelists talking about how AI will be used to help patients decide whether to go on Active Surveillance or whether they need Androgen Deprivation Therapy if they are going from AS to radiation treatment. Click on the registration link: https://zoom.us/meeting/register/tJ0vcOGspzsvH9DFyNB7ih5eRw_Vnw_DNw-J#/registration
(Also, President Biden gets a “State of the Union” message. But I may have him beat with my “Prostate of The Union” on NPR’s “Today Explained” with Noel King. Please give it a listen:
By Howard Wolinsky
The American Society of Clinical Oncology Genitourinary Congress in San Francisco is one of the giant events on the prostate cancer chicken dinner circuit.
Something like 3,000 medical oncologists, radiation oncologists, urologic oncologists, advanced practice nurses, and trade show reps hear about the latest and greatest in their world. It’s the House that Cancer Built.
Two items in particular at ASCO impact men with lower-risk prostate cancer who are on the Active Surveillance.
First off, Scott Eggener, MD, urology vice chairman at UChicago, presented a study showing the Stockholm3 blood test—as a follow-up “reflex” test to the go-to prostate-specific-antigen test (PSA) blood levels—could help find more high-risk cancers and also could spare men with low-risk Gleason 6 cancers from unnecessary biopsies.
Stockholm 3 helped prevent more than half of unnecessary biopsies without sacrificing accuracy.
Stockholm3 has been used mainly in the Scandinavian countries. But Eggener and colleagues validated the value of the test for the first time in a diverse North American population, involving 17 centers in the U.S. and Canada.
Read about the study here: https://www.medpagetoday.com/meetingcoverage/mgucs/108457
Stockholm 3 is expected to be available in the U.S. in the first quarter this year. The price has not been set.
Michael Leapman, MD, of Yale’s prostate center, reviews Stockholm3 in his column below.
NOTE: I will be sharing soon an exclusive interview with the medical director of the company that is developing Stockholm3
Secondly, Eggener, a leader in the movement to rename Gleason 6 as a noncancer, showed up again at ASCO in a debate over whether Gleason 6 should be relabeled as a non-cancer to spare men on AS from emotional distress and financial toxicity, such as insurance discrimination. See below.
The Stockholm 3 model is a blood test for prostate cancer that incorporates multiple pieces of information to generate an estimate of how likely a person is to have prostate cancer.
It includes a patient’s PSA level, several plasma protein markers, a large panel of genetic data (single nucleotide polymorphisms), as well as clinical information such as age, family history, and prior history of prostate biopsy.
The upsides of the test are that, if used as intended, the tool could help reduce the use of prostate biopsy and detection of clinically insignificant (indolent) prostate cancer. The downsides include costs of testing and the possibility that test results may not be acted on as intended – such as the use of biopsy in the setting of low predicted risk, or vice versa.
(Send your questions about AS and urology, radiology, pathology, sexual health, and lifestyle via email to mailto:pros8canswers@gmail.com, or if that doesn’t work, cut and paste: pros8canswers@gmail.com
(Keep the questions short and sweet. They should be of general interest. Sign with your real name, or just initials, tell me where you live, how long you‘ve been on AS, and how it’s going for you. Share a whimsical signature if you’re so inclined. Like ‘Dapper Dan from Idaho” or “Lost in Flossmoor.’)
Michael S. Leapman, MD, MHS. is an associate professor of urology and clinical program leader, the Prostate & Urologic Cancers Program, Yale Cancer Center, New Haven. He has a special interest in low-risk prostate cancer, Active Surveillance, nerve-sparing robotic prostatectomy, focal therapy, high-risk disease, molecular imaging, and PSMA PET scans. Send Dr. Leapman questions on Active Surveillance at mailto:pros8canswers@gmail.com
Opposition to renaming Gleason 6 as a noncancer wins in a debate at ASCO
By Howard Wolinsky
The idea of renaming Gleason 6 (Grade Group 1) as a non-cancer was the subject of a hot debate at the
2024 American Society of Clinical Oncology Genitourinary (ASCO GU)--and also a major article in the Wall Street Journal last week in San Francisco.
The audience at the outcome was divided on the issue at 50-50. But after the debate, the support of the status quo won 64-36.
“The Oxford debate outcome at ASCO GU was a loss of 16% to renaming BUT gotta take into account the nature of the audience,” noted Rick Davis, founder of AnCan Foundation, who witnessed the debate and addressed the assembly.
The debate pitted Scott Eggener, MD, University of Chicago urologic oncology, a leading proponent of renaming Gleason 6 a non-cancer, against Martin Gleave, MD, head, Department of Urologic Sciences, University of British Columbia, Vancouver, BC.
Eggener emphasized that this proposed nomenclature change is not motivated by any underlying financial/economic incentives. In fact, renaming GG1 disease, would reduce the number of patients with prostate cancer and thus “adversely” impact financial/economic reimbursements for physicians such as Eggener. "The rationale for this proposed change is that although we have come a long way in managing these patients, we still have huge problems with over-screening, over-diagnosing, and over-treating prostate cancer patients,” he said.
Eggener has argued that the cancer designation causes emotional distress and financial toxicity, such as insurance discrimination, in men who are given this diagnosis. (https://www.urotoday.com/conference-highlights/asco-gu-2024/asco-gu-2024-prostate-cancer/149344-asco-gu-2024-public-health-would-dramatically-improve-if-gleason-6-grade-gourp-1-weren-t-called-cancer.html)
(A survey of 460 patients led by AnCan’s Virtual Support Group for Active Surveillance, found that 50% of these men experience emotional distress and 16% experience financial toxicity, such as insurance discrimination.)
Gleave contended the proposed change is “flawed” and “misguided.” (https://www.urotoday.com/conference-highlights/asco-gu-2024/asco-gu-2024-prostate-cancer/149346-asco-gu-2024-renaming-gleason-3-3-grade-group-1-against.html?acm=_12512)
He said: “It seems that reclassification aims to fix one wrong with another wrong (i.e., fixing the poor active surveillance uptake for GG1 by renaming it), as ‘this wrong would set in motion unintended consequences that would create more problems than it wants to solve, especially when the uncoupling of detection from treatment is already happening.’'
There was an inherent bias in the audience, which primarily was made up of medical oncologists, who Eggener told me was “an audience who never ever see patients with GG1.”
Eggener, who put me on active surveillance in 2010, said of the debate: “I was happy with it, albeit surprised with the voting. Dr Gleave won fair and square. Though (there was) somewhat non-scientific voting…unclear how many voted pre/post, had to do it online with a log-in.”
I have worked with Eggener on this issue and know he views this as a “career goal.”
In 2021, Eggener debated Ming Zhou, MD, Pathologist-in-Chief, at an AnCan webinar on this issue. Pathologists in particular oppose renaming Gleason 6. Eggener won over a patient audience and Zhou in the end switched sides:
The Wall Street Journal also took the Gleason 6 debate to the general public last week. If you have a subscription, you can read the story at: https://www.wsj.com/health/wellness/prostate-cancer-low-risk-treatment-rename-185b6e3f under the title: “The Cancer That Doctors Don’t Want to Call Cancer.”
I reviewed the Journal article in TheActiveSurveillor.com at https://howardwolinsky.substack.com/p/when-is-a-cancer-not-a-cancer-wall
Meanwhile…AS man sticks it to the man, favors a name change for Gleason 6
By Howard Wolinsky
Dr. Adam Kibel, chair of urology at Brigham and Women’s in Boston, has been a strong opponent of renaming Gleason 6 as a noncancer. He worries, in part, that if Gleason 6 suddenly were named a noncancer—something that has happened with a few other lesions—that men would drop out of active surveillance and put their lives at risk.
That, in his view, apparently would be the road to perdition: more men would be diagnosed with more advanced terminal cancers. And I suppose this would open doctors up to malpractice if the worst happens. (I don’t take a doctor’s liability seriously since this would be the patient’s choice.)
But Dr. Kibel please share your data for your position.
As I have pointed out in The Active Surveillor many times, our patient-centered survey of 460 men on or previously on AS found that an underwhelming 5% said they would drop surveillance if Gleason 6 were renamed, And 82% said they would continue on surveillance.
I presented this data a year ago in an off-site meeting during the see-and-be-seen ASCO meeting. Dr. Kibel made a powerful case there against renaming Gleason 6, but he I guess he missed mine showing how the Gleason 6 cancer diagnosis can lead to emotional distress and financial toxicity, such as insurance discrimination.
Brush up here: https://academic.oup.com/jnci/article/115/10/1236/7243176?login=false
Well, based ion this article, amazingly I just heard from one of the good doctor’s patients, a 60-year-old man on AS, who asked me to withhold his name. He told me planned to stay on AS—even if the name were changed— and would so inform Kibel.
(Dr. Adam Kibel)
Kibel’s patient wrote me:
A name change would not change the way I follow up with Dr. Kibel. I would continue with my 6-month follow-ups, PSA testing, MRIs, and biopsies.
It is no different than treating my coronary artery disease or detached retina, I continue to follow up with my doctors even though these ailments do not affect my daily life. I continue to follow up just for my general health.
Changing the name would also help with obtaining life insurance coverage, as you mentioned [in the TheActiveSurveillor article]. My term policy is ending in March and no company will write a policy with that diagnosis. I was finally able to continue my current policy, at 10 times less coverage and 492% increase in yearly premium with no medical questions or examinations.
I am for the name change, it will not change how I follow up with my treatment.
He added: “I will let Dr. Kibel know that I would continue to see him even if my cancer was re-classified. You are welcome to use my letter, but I would like to remain anonymous. Very few people know of my diagnosis.
“I believe I am being treated well at Brigham and Woman’s and getting the care I need. IF I had not requested a second opinion from Dr. Kibel, I would have had surgery, and who knows what long-lasting side effects I might still be suffering from.”
Dr. Kibel, please consider this an open invitation to sound off the issues.
Uropathology top gun Jonathan Epstein and Kibel wrote the objection to renaming Gleason: https://ascopubs.org/doi/10.1200/JCO.22.00926
Eggener and five others [including me] opened the debate here: https://ascopubs.org/doi/10.1200/JCO.22.00123 in the best-read article in the Journal of Clinical Oncology from ASCO in 2022.
Putting the Glee in Gleason: And away we go with more prostate humor
By Howard Wolinsky
Jeff Coleman is a witty fellow and a winner of TheActiveSurveillor.com’s first “Putting the Glee in Gleason Humor Contest.”
I always like to hear from Jeff, a frequent visitor to the AnCan Virtual Support Group for Active Surveillance. He’s a quipster and a self-acknowledged smart-aleck. He keeps things light even when we have a weighty subject at hand.
In 2020, Jeff, of Eldersburg, Maryland, outside of Baltimore, was diagnosed with high-volume Gleason 3+3=6 prostate cancer.
Here are some of his prostate comedy stylings:
During the COVID-19 pandemic people were worried about the “corona” virus. I think men with prostate issues may be more worried about the “no bona” virus!
ED is described as having a difficult time getting an erection. This may be the only instance in which the word “difficult” is not synonymous with the word “hard”!
Speaking of ED, I thought about trying Viagra. They say for an erection lasting longer than four hours I should go see my doctor. I don’t know. He’s really not that attractive.
Jeff won a copy of “The Invasion of the Prostate Snatchers” by Dr. Mark Scholz and his late patient Ralph Blum. Scholz autographed the book.
(Jeff and his winnings.)
Only a month away. No excuses. What’re you waiting for? Sign up for ZERO support group on AS in March
By Howard Wolinsky
For the past three years, I have run a special Active Surveillance support group for ZERO. Last year, our virtual support meeting drew 60 patients to talk about AS. By far, it was the biggest session of any at the annual ZERO Summit.
Be there or be square: 11 a.m. Eastern on March 12, 2024.
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZUsfuqgrjIoG9AWf7voMhzT_UjdqbQQbQPA
The Stockholm3 test is a blood-based test that measures various biomarkers and genetic markers which, when combined with some clinical data uses an algorithm to generate a risk score to “predict” prostate cancer.
Like all other prostate cancer screening tests it's meant to be used along side the highly unreliable PSA and DRE tests.
And, like all other screening tests for prostate cancer, it’s marketed as “useful” for predicting prostate cancer. However, this all-inclusive prostate cancer label is deceptive for two main reasons. First, not all prostate cancers are equal i.e. the Gleason 6 is a bogus cancer and many other prostate cancers grow extremely slowly taking 40 years or more to get to half a centimeter in diameter from the time of mutation. Second, it’s essentially the 10 to 15% of high-grade prostate cancers that are potentially lethal.
In conclusion, not only is the Stockholm3 test costly but it’s ability for detecting high-grade cancers early enough to save significant numbers of lives is unproven.
Dr. Vorstman, What do you think of Stockholm3 tedst, which doesn't aim to replace but to improve results from PSA. What are sensitivity and specificity? And what are they for PSA? Howard