Reflecting on 14 years on AS for low-risk PCa

The future's so bright I gotta' wear shades

By Howard Wolinsky

This week, I am observing the 14th anniversary my being diagnosed with Gleason 6 low-risk prostate cancer, then rushed by my first urologists to undergo radical surgery ASAP, declining surgery and finding a second urologist who said I was the “poster boy” for Active Surveillance (AS).

It’s a time for reflections on AS, then the path not taken and now the path taken by most men like me diagnosed with low-risk PCa.

In my time on AS, I’ve seen evolution care for most, but some of us have been left behind, especially minority men and men living in inner-city and rural AS deserts. For me this has been a merry-go-round, low-impact approach to a cancer that virtually never kills and that never spreads in its “pure” form.

For others, I know AS is more of a roller-coaster like KingDa or the Steel Dragon, a wild ride with emotional stress that leads men who could remain on AS but choose to undergo aggressive treatment in hopes it will reduce their concern about living with a cancer even though it’s not likely to harm them.

For the record, my case likely isn’t exactly like yours.

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I recently took my first PSA (prostate-specific antigen) blood test in more than a year.

Good news: The results were “stable” on the merry-go-round, according to my urologic oncologist Brian Helfand, MD, PhD. He has managed my “wimpy” cancer since 2016.

My PSAs generally have been between mid-4s to low 5s with a couple of spikes in the 8s. My PSA was 5.17 ng/mL on November 30, 2024 compared to 5.01 ng/mL in September 2023. Not bad for an old guy of 77.

Helfand cleared me to fly for another year on AS lite with a de-intensified protocol—developed by him and me to suit my needs as a patient with very low-risk prostate cancer. Since 2016, I have been monitored with the Prostate Health Index, which includes PSA. I haven’t had an MRI or biopsy since 2016.

If my PSA or PHI rises dramatically, then I will undergo an MRI to “make sure no major changes or concerns,” Helfand said.

Many sticklers would say I am not on AS. Others say I am following a Watchful Waiting protocol, a less intense version of AS.

Whatever you call it, I know I have virtually no risk of developing a deadly prostate cancer—though in medicine they never say zero.

More good news. I underwent GoPath Diagnostics’ PROSTATENOW, which includes more than 200 prostate cancer-risk associated mutations for calculating genetic risk scores for multiple racial groups. Helfand, who helped develop this test, said my results were “essentially normal with an overall average disease risk which also bodes well for outcomes in AS.”

[Note: I took the PROSTATENOW test on a lark. I was visting the founder of GoPath, Jim Lu, MD, when he suggested I take his test. If you have already been genetically tested, I suspect you probably don’t need a check-up.]

This backs up the results I had in the Promise study. If you have been diagnosed with any type of PCA, you should take the free germline test from Promise.

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Honestly, I have debated whether to drop AS altogether. I wrote about this last year in MedPageToday International authorities on prostate cancer agreed with me that there is a need for guidelines for AS for men over 75 who are on AS. In fact, Kevin Shee, MD, of University of California, SanFrancisco, and his colleague the renowned AS pioneer Peter Carroll, MD, MPH, just published a paper inspired by my question. (I plan to write more about this soon.)

In doing this newsletter, I regularly meet and interview experts specializing in prostate cancer. Many seemed shocked that I have been on AS for more than a decade. But I know many men who have been on AS longer, 20 years or more.

What these urologists know, and we patients generally don’t, is that the dropout rate from AS is high: 50% five years after diagnosis and 75% 15 years after diagnosis. Mileage on AS can vary whether you have Gleason 6 (Grade Group 2) and Gleason 3+4=7).

I call this AS’s dirty little secret. Some surveillors quit because their cancer has “progressed” to higher Gleason scores,

Others quit because of emotional distress from living with with a cancer, even an indolent one. This is call “anxious surveillance.” And major medical groups whose members care for patients on AS don’t have guidelines to screen all patients with prostate cancer for emotional distress.

I co-led a study of 460 patients that found that about 55% had some emotional distress (anxiety, stress, depression) around the time they are about to undergo PSA, biomarker, MRI or biopsy testing or are waiting for the results, and 10% have it bad enough that they would consider being treated aggressively. A leading clinical psychologist who studies and treats men with prostate cancer has told mes: “Prostatectomy is not a cure for anxiety.” I add that the same is true for treated with radiation.

During my time on AS, there has been an evolution in protocols and some effort to customize care.

When I was diagnosed in 2010, only 6-10% of American patients went on Active Surveillance. With growing research on the safety and other upsides of AS, a change in the urology guard, about 60% of Americans with low-risk prostate cancer go on AS today.

But the uptake of AS in low-risk patients.rates in the U.S. overall doesn't compare favorably to the 90%+ in Michigan and the 95%+ in Sweden and the U.K.

The American Urological Association has set a goal for AS uptake in low-risk patients in the U.S. of 80%. They can do better.

Several AS experts have told me if I had a rising PSA path today, I probably wouldn’t have been diagnosed. AS can prevent or delay aggressive treatment and its potential side effects, such as incontinence and erectile dysfunction, but, depending on your individual situation, you now can avoid AS through judicious use of MRIs and biomarkers.

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There have been major advances in AS since in 2010 when a urologist tried to rush me into his OR. He told me he didn’t “support that modality (AS).”

One small victory, the Notorious Dr. R.P., my first urologist, now recommends AS to some of his patients. One small victory for mankind.

Here are some others:

—Biopsies. When I started on AS, I underwent annual biopsies based on a protocol from Johns Hopkins. All told, I had six biopsies—only one had a single core of Gleason 6. That so-called cancer was seen once in December 2010—and then never again.

We patients generally were not informed of the risks of sepsis, especially from transrectal biopsies. Now patients may undergo biopsies every other year, or even every three to five years. And many patients are demanding that their doctors offer transperineal biopsies that virtually are safe from deadly sepsis.

—MRIs. In 2011, I joined the first cohort to undergo prostate MRIs.

Insurance companies were resistant to paying for prebiopsy MRIs. It seems strange to say now, but insurance companies would only cover MRIs if you had confirmed prostate cancer. This approach was ass-backward. This approach shouldn’t be happening now, but it is. I hear regularly from men whose urologists rush them into biopsies before MRIs. Ass-backwards.

—Changed goals for patients with lower-risk PCa.

The goal way back in 2010 was to help men avoid risks from radical prostatectomy and radiation, including incontinence and ED. It was worthwhile then as we were being led like lambs to the slaughter, but now is outmoded,

Few men with low-risk prostate cancer now undergo prostatectomies as radiation has become safer and more popular. But 40% of low-risk men are treated. Way too high.

Now, I think, the goal is evolving to avoid biopsies and diagnosis of prostate cancer, by avoiding unnecessary biopsies. Biopsies carry risks for deadly sepsis. An estimated 2,000 American men a year die from sepsis from transrectal biopsies. I can’t believe that the U.S. tolerates this. (More below.)

—Emergence of prebiopsy MRIs, genetic tests, biomarkers, and now AI tests help men avoid unnecessary biopsies and get some indication on how aggressive their lesions are. Typically, this testing can reduce the need for biopsies, by 50-60%. Fourteen years ago, we didn’t have these choices.

--Impending demise of the Digital Rectal Examination (DRE). The DRE is no one’s favorite, not doctors, nor patients, especially Black patients. A growing number of doctors want to wave bye-bye to the so-called “finger wave.”

Part 1: Up yours. The case for DREs.

May 23

(Can you answer the anonymous questionnaire on your thoughts on DREs? Go here: https://forms.gle/QVXTXmuTrHjTppKq8)

Read full story

Personally, I must have had dozens of DREs. I am happy to avoid them, but did not find them very uncomfortable. I was a member of this consensus panel calling for an end to the practice.

Bye-bye 'finger wave'? More MRIs before biopsies? Movember consensus recommends sweeping changes to AS protocols

January 29, 2023

By Howard Wolinsky

Read full story

I did a survey last September on AS patients’ views on DREs. Generally, they are fine with the finger waggle. Some men feel exams are incomplete without a DRE. Some, especially Black men, consider the DRE a dealbreaker.

From my unscientific survey:

You can still be heard on DREs. Go to https://forms.gle/QVXTXmuTrHjTppKq8)

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Generally, things have improved in AS in the past 14 years. Let me note some areas that have been neglected.

—Emotional distress issues. The American Urological Association (AUA) and the American Society for Radiation Oncology (ASTRO) are leaders in prostate cancer care. But they stand alone among major medical organizations in not having guidelines recommending routine screening for emotional distress in prostate cancer patients.

The diagnosis of prostate cancer contributes to the risk for emotional distress (stress, anxiety, depression) and financial toxicity (such as job and insurance discrimination).

Meanwhile, online and in-person support groups, created for AS patients only, have been filling the gap for many patients suffering from emotional distress from their cancers. Contact such groups as ASPI (Active Surveillance Patients International) and the AnCan Foundation’s virtual support group for AS.

Read my interview with “Deep Prostate” to get some of the insider thinking about this issue.

EXCLUSIVE! Read all about it: 'Deep Prostate' spills the beans on why AUA has no guideline for screening PCa patients for emotional distress

December 5, 2023

By Howard Wolinsky

Read full story

—U.S. lags on transperineal biopsies that protect against potentially deadly and disabling sepsis. The American Urological Association since 2023 has given equal weight to transrectal and transperineal biopsies. That’s some progress, but no men should die from prostate biopsies. Urologists generally have a high opinion of their infection rates. But patients can die from a prostate-biopsy induced sepsis a month or more after the event.

The European Association of Urologists since 2021 gave preference to transperineal. When will AUA act to protect patients?

As a consumer reviewer of AUA’s proposed guidelines, I told the AUA guideline panel that the AUA was watching the house burn down before calling in the fire brigade. A new multi-center ramdomized study has shown transperineal biopsies were safer than transrectal biopsies.

—Special needs of minority men largely have not been addressed. Minority men, especially Black, Latino, Asian/Pacific Islanders, and Native Americans, need to be better informed about their risks for prostate cancer but also, when appropriate, about the option of Active Surveillance. The same holds true for rural and inner-city men who live in AS deserts.

—Redefine Gleason 6 (Grade Group 1) as a noncancer. I have been campaiging for this change to spare men from the cancer diagnosis and stigma, mental distress and financial toxicity. Check out https://ascopubs.org/doi/full/10.1200/JCO.22.00123 Based on my study mentioned earlier, Santa CDC (Centers for Disease Control), against all odds, approved a $1 million grant for a study of Blacks and Latinos and their views of AS issues.

—Genetic testing is far more common in the U.S. than Europe. I suggest that it’s time that germline DNA tests—tests for DNA we inherit from our parents as opposed DNA from our cancers—be provided to all newly diagnosed patients to help guide the course of management of their disease.

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I’m sure I missed some changes in AS over the past 14 years. Please let me know what you think I missed. Write to me at howard.wolinsky@gmail.com. If you have hit a landmark in your AS, let me know if you want to write about your cancer “journey.”

Send me a prost-a-nniversary card, if you wish, as I leave my pros-mitzvah (13th) year and edge toward my 15th anniversary, my AS Quinceañero year. It’s a thing.

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What are you waiting for: Time to register for the ‘Active Surveillance 2025’ is running out

By Howard Wolinsky

The Active Surveillor’s first webinar, “AS ‘25,” is less than a month away.

If you are a paid subscriber, sign up for your free pass. (Check your email.)

If you are an unpaid subscriber, please sign up for a paid subscription:

If you feel you can’t afford a subscription ($80/year), contact me at howard.wolinsky@gmail.com and we’ll work something out. Meanwhile, an anonymous donor has created a fund for Active Surveillor who can’t afford a subscription. He’s paying it forward.

If you are on, or, are considering surveillance, you don’t want to miss this program.

Speakers for “Active Surveillance 2025” include:

--Jonathan Epstein, MD, former chief pathologist at Johns Hopkins University School of Medicine, one of the world's leading pathologists. Epstein, now based in New York, will be making his first appearance before a patient audience in almost two years,

—Brian Helfand, MD, PhD, chief of urology at NorthShore University HealthSystem outside Chicago, an expert not only in prostate cancer but also in molecular biology.

—Christian Pavlovich, MD, who runs the Active Surveillance program at Johns Hopkins and recently co-authored a major study on diet.

—Timothy Showalter, MD, MPH, medical director of Artera AI, which has made news with its prostate test to help patients decide whether to go on AS.

Hope to see you there.

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Unsolicited testimonial

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Thank you for making the difference you have in this growing area which seems to have been heavily transformed since I first was diagnosed back in 2015. Outstanding!

Jerry Runnels