Part II: New Year's resolutions for AS patients
Your first resolution should be to do your surveillance. Here's more.
(Editor’s note: This picks up on Part 1 of New Year’s resolution: https://howardwolinsky.substack.com/publish/post/153764859) This more focused on prostate issues.)
By Howard Wolinsky
(7) If you can, avoid unnecessary biopsies, unnecessary diagnoses, and unnecessary Active Surveillance. This starts with being careful not to be sucked in for an unnecessary biopsy.
Fourteen years ago, I started getting annual biopsies as recommended then for AS,. Damn thing. The cancer was seen only once—a 1 mm. Gleason 6—and then never again.
So I got diagnosed with cancer and went on what turned out to be unnecessary AS. Prominent urologists tell me over and over I probably wouldn’t have been diagnosed with cancer if I was starting my journey today.
The cancer diagnosis was a life changer. I had what my doctor called a “wimpy cancer”—a Gleason 6/Grade Group 1—that looked like cancer but didn’t act like one. It would virtually never kill or spread. But still had potential psychological effects, like anxiety and the emotional distress—and financial toxicity—like insurance and job discrimination.
I went from being a mild-mannered medical reporter on a major metropolitan newspaper to a champion for and advvocate for other men like me, with lower-risk prostate cancer. We have been called the Rodney Dangerfields of the cancer world—we get no respect—and very little funding for research from the likes of the National Cancer Institute and the (Advanced) Prostate Cancer Foundation.
I follow a well-known journalism saying printed in 1893 by my fellow Chicago journalist Finley Peter Dunne: “The job of the newspaper is to comfort the afflicted and afflict the comfortable.”
And don’t get me wrong: I have enjoyed meeting and writing for you all and trying to help other men from being mistreated by the system.
I had a heart-to-heart with my current urologist in 2018 and based on the study in the New England Journal of Medicine that found with MRI use the propotion of men diagnosed eith prostate cancer could be reduced. I told him patients like us were going to revolt against having so many biopsies. Since then, I have been on a de-intensified AS—AS lite—and only have annual PHI (Prostate Health Index) tests, an expanded PSA.
If your PSA is rising, don’t rush in for a biopsy. See if you can undergo a prebiopsy MRI. If you undergo a biopsy and end up being diagnosed, you’ll be tarred with a diagnosis that can trigger emotional distress and and cause financial issues.
Artera AI’s new prostate test and some biomarker tests like IsoPSA, Stockholm3, My Prostate Score 2.0, etc. can help about half of us avoid unnecessary biopsies.
My friend Bob Allan, of the Active Surveillance Nationwide Support Group, Canada, urges caution.
He said: “We have a number of patients that have rising PSA (=about 10) but negative MRI. The prebiopsy MRI does not always work. It is hard for a patient who has rising PSA and negative MRI not to go for a biopsy. They want to be diagnosed so they can "FIX" IT! You are asking a patient with negative MRI and rising PSA to sit tight! A tough ask.”
Your call.
(8) If you must have a biopsy, see if you can undergo a transperineal biopsy, which bypasses the germy rectum. Transrectal biopsies—some critics call them transfecal biopsies—can result in potentially disabling and deadly sepsis. Norwegian researchers have reported that 3,000 men a year—2,000 in the U.S.— die from sepsis caused by prostate biopsies.
Many U.S. urologists are skeptical that they unknowingly are killing their patients with transrectal biopsies. But European Association of Urologists endorsed TP as the preferred biopsy in 2021.
The American Urological Association hasn’t gone that far—TR and TP are considered to have similar standing in the U.S.— and American urologists are slowly adopting TPs. Readers of this publication favor TPs, though they can be hard to get in the U.S.
Maybe 10% of biopsies in the U.S. are transperineal. But change is in the air.
This small survey of The Active Surveillor readers found most are opting for transperineal. You guys are on the leading edge.
And even more of you anticpate having a TP—if you need a biopsy.
I suspect that 2025 will be the year when researchers can satisfy the American Urological Association with a new randomized study that proves the benefit of TP. I heard through the grapevine—a very reliable source in UK—that a major study soon will be published.
Keep your fingers, eyes, and toes crossed. If you need a biopsy, I’d suggest seeing if you can get a TP if you can.
(Check these out re the debate: https://www.medscape.com/viewarticle/991496 Info on first randomized study to show benefit from TP:
(9) If you are diagnosed with any prostate cancer, remain calm. This is a slow-growing cancer in most cases. And Gleason 6 (Grade Group 1)essentially never kills or spreads—or so the gurus tell us. See #3. I once stayed in a hotel in Costa Rica near an active volcano. The hotel had signs up telling us:
(10) Get a second opinion. If you have a biopsy and question your results get a second opinion, especially from a uropathologist if a general pathologist read your biopsy.
In the “Active Surveillance 2025” webinar on Jan. 4, I asked Jonathan Epstein, MD, one of the world’s top uropathologists, whether patients who get Gleason 6 scores in their first reads should get second opinions anyway. He advised that patients should still get second opinions from specilized uropathologists to be sure. He said odds are it will remain a Gleason 6, but it will be in the patient’s interest to be sure.
(BTW, if you attended the session on Jan. 4, please respond to the survey link I sent to attendees. Also so, coverage will be forthcoming from the confab and, on advice of enthusiastic attendees, I will share a link for the video.)
I know many guys who were headed for aggressive treatment, only to have a world-class expert downgrade their Gleason scores and set a new course for managing the low-risk cancer. The reads can go the other way. Be safe, get a second opinion.
You can get overreads (second opinions) for MRIs as well. And, finally, if you are uncomfortable with the suggested treatment, get a second opinion. Ideally, both a urologist and a radiation oncologist should be looking over each other’s shoulders to get you the best recommendation. Some centers have multi-disciplinary teams make recommendations.
Check out AS 101 with Dr. Epstein regarding second opinions: https://aspatients.org/meeting/second-opinions-and-biopsies/
See how Keith Day reversed the course of his treatment by loading up on second opinions:
(11) If you’re meeting with a urologist and covering important material about your diagnosis and treatment, bring a spouse/buddy, a notebook, or use the handy voice recorder on your mobile phone.
These are memory aides that will help your recall of what happened and may save you follow-up calls. It’s not easy to remember everything discussed, especially if you’re nervous.
I’d especially recommend recording your doctor visits.
Ask permission first—though most states allow recording with single-person consent—and your consent is enough.
I have had mixed reaction to doing this—or trying to.
My former doctor freaked out when I asked permission to record. I didn’t record, but my standalone recorder sat on the table and made the doctor twitchy. I don’t know what he was afraid of. Maybe a recording had served as evidence in a suit?
Every time I put my mobile down on the desk in future visits, he gave me a nervous look and nervously double-checked to see if my recorder was off.
But my current doctor says he wouldn’t say anything different if a recorder was on or not.
Further advice: It’s your life at stake here. Don’t be intimidated. Write your questions out in advance. Don’t leave until you get all your questons answered. Check out the doctor’s notes available on the portal afterward—make sure everything is correct and that you understand what’s going on. And BTW, don’t be araid of hurting your doctor’s feelings if you seek a second opinion. Most doctors know this is routine and important for your safety and confidence in results. Don’t be bullied physicians and records departments who get in the way of a second opinion. You own the records and you should be able to do with them whatever you wish.
(12) Find out about your PSA density (PSAD). Ask your urologist, who probably is tracking this important number but not sharing, or calculate it yourself.
Divide the patient's total PSA level (ng/mL) by the measured volume of their prostate (in mL), obtained through MRI or ultrasound. Essentially, the, formula is: PSAD = PSA level / Prostate volume.
(There are PSAD calculators as well like https://www.mdcalc.com/calc/2076/prostate-tumor-volume-density)
The math is simple, but PSAD is considered a very powerful tool in differentiating between benign prostate enlargement and prostate cancer, as a higher PSAD value may indicate a higher likelihood of cancer, even if the total PSA level is within normal range.
According to Dr. Christian Pavlovich, head of the AS program at Johns Hopkins, PSA density less than 0.1 is very favorable, PSA density less than 0.15 is also associated with a low progression risk, while a PSA density of 0.2 or greater raises a concern for a cancer that may need treatment.
Pavlovich, another speaker at AS 2025, said, pSAD provides a more accurate picture of prostate cancer risk by taking into account the size of the prostate gland, allowing doctors to better differentiate between a high PSA level due to a large benign prostate and one potentially caused by cancer, especially when considering active surveillance or further diagnostic steps like biopsy. A higher PSA density generally indicates a greater likelihood of clinically significant prostate cancer, even if the overall PSA level is relatively low.
(13) How much time do you have left? Ask your urologist about your projected longevity. Typically, urologists can eyeball you and size you up based on your appearance, activity within the context, co-morbities like diabetes and heart disease, and actuarial tables.
This is an important factor in deciding what approach should be taken to manage your care. Again your doctor probably knows, but may not have told you. If you have an estimated five years left and are stable, you might even leave AS since a prostate cancer is not likely to be a threat and you could be too old for aggressive treatment.
I’m 78 and have 10.1 years left, and am still weighing whether to stop surveilling early since everything has been stable. My urologist says he expects I have even more years in me. He told me: “My patients don’t die from actuarial charts.”
(14) Get a DNA check-up of prostate-cancer genes you inherited. As many as 60% of prostate cancers have a genetic component, according to the National Cancer Institute, such as BrCa2 mutations. If something is found, it may impact the course of your treatment, and also this information is important for both male abd female relatives. A free test is available if you have been diagnosed with PCa from the Promise trial at Hopkins and the University of Washington. Go here and get ready to spit for science.
(15) If you’re an AS newbie or a vet who wants to brush up, check out Active Surveillance 101. This is a video course on AS, prepared by leading support groups in the U.S. and Canada, in which the major topics in the field, including PSAs, biopsies, genetics, diet and exercise are covered by experts, who are interviewed by an AS patient and his savvy spouse.
(16) Remember, you’re not in this alone. I never thought I’d be a support group guy. But I have found the groups are useful in easing anxiety, getting tips on dealing with the system, learning how others cope, and just making common cause with others going through the same thing. See below for some support groups. I’d recommend support and educational groups that focus on Active Surveillance, other groups can be useful as well.
Peer-oriented prostate cancer support and education groups
By Howard Wolinsky
There are support groups and there are support groups.
I, for one, never thought I’d be supporting support groups.
But when I saw broader groups that tried to cover the full range of prostate cancer—from very very low-risk to very very high-risk—I determined that for most men on Active Surveillance, specialized support worked.
So I helped start two support groups for men on surveillance: the AnCan virtual support group for AS and Active Surveillance Patients International (ASPI).
I expressed some of my reasons in these articles:
United we fall; divided we stand
Patient advocate Thrain Thorvaldsson and founded the first AS-only group in Iceland. He contacted me in 2017 after I called out urologists for not listenting to patients at the American Society of Clinical Oncology’s Genito-urinary Congress. After I wrote this article about my experience, I began my life as an advocate and activist. Thrainn, Gene Slattery, Mark Lichty and I co-founded ASPI.
I know some men like to attend meeting for the full “reluctant brotherhood, others don’t.
Here’s a list of groups I know about. Let me know about other groups you have found to be helpful.
—Active Surveillance Patients International (ASPI)
—Active Surveillance Nationwide Support Group, Canada
— AnCan’s virtual support for AS
—Prostate Cancer Research Institute
—Prostate Cancer United Kingdom online support group for AS
—Prostate Forum of Orange County
—Tri-Cities Prostate Cancer Support Group in British Columbia,
MRI-invisible lesions: A good sign—like a Gleason 6?
By Howard Wolinsky
Did you know that it’s possible for prostate cancer can be confirmed by a pathologist but the lesion can be invisible in an MRI?
Is this a good thing? Many researchers think it is.
Dr. Mark Emberton, Professor of interventional oncology at University College London and Dean of its Faculty of Medical Sciences, will be speaking to the ASPI webinar about MRI-invisible lesions on Saturday, January 25, 2025, from noon – 1:30 p.m. Eastern (5:00pm-6:30pm UK time). Emberton is a pioneer on the use of MRIs in diagnosing, classifying and monitoring prostate cancer.
Don’t be invisible. Register here: https://zoom.us/meeting/register/tJYldu-qqzojGNEzCkgPQuTOWYGhcL80Dhec'
MRI-invisible lesions are considered a good thing comparable to Gleason 6.
Professor Emberton’s clinical research is aimed at improving the diagnostic and risk stratification tools and treatment strategies for prostate cancer (PCa). He specializes in the implementation of new imaging techniques, nanotechnologies, bio-engineering materials and non-invasive treatment approaches, such as high intensity focused ultrasound and photo-dynamic therapy.
His research has been published in over 300 peer-reviewed scientific papers in journals including BMJ, Lancet Oncology and European Urology. He has also contributed to the development of guidelines for the management of PCa and lower urinary tract symptoms, published by the International Society of Geriatric Oncology and the European Association of Urology.
If you have questions, please send them to: contactus@aspatients.org