Pollyanna and the hard realities of spousal/partner support for patients on Active Surveillance

What's been your experience? Please answer the survey below.

By Howard Wolinsky

I never have claimed my prostate cancer journey is typical. In fact, I say it’s the opposite.

With this cancer, you’re only as good as your last PSA (prostate-specific antigen) test, PHI (prostate health index), MRI, or biopsy (hopefully transperineal).

I’ve been lucky—other than one time a biopsy showed a single core of 1 mm. of Gleason 6 in December 2010. That’s been it. Five biopsies in total. One tiny same of low-risk prostate cancer,

I had some bad luck obtaining term-life insurance and a prostatectomy-happy urologist (I call him the Notorious Dr. R.P.), who tried to push me into unnecessary surgery, Other than that I have had low numbers and low stress and grateful for the value of second opinions.

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I was lucky that a cousin of mine, whose dad died from prostate cancer and who himself was found to have a Gleason 6, recommended the book, “The Invasion of the Prostate Snatchers” by patient Ralph Blum and his doctor Mark Scholz, MD, of Prostate Cancer Research Institute fame.

The book gave me the courage to fend off Notorious Dr. RP, He never told me I had low-risk cancer. He wasn’t alone. More than 90% of doctors in those days pushed the treatment trail.

I knew enough to explore my options and found out about Active Surveillance.

Dr. R.P. did not support AS then. He does offer it now. Times changed.

I could have had the surgery and encountered the risks for erectile disorder and incontinence. 90-94% of newly men diagnosed with low-risk “cancer” like me treated in 2010; 40% (still too many) are treated now in the U.S.

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My second and third urologists—authorities on AS--have said I am “the poster boy” for AS. They have said I have “wimpy” or “lame” prostate cancer, and that if my PHI (prostate health index, a type of PSA)) were any lower that I wouldn’t have prostate cancer at all.

Lucky again to live in the Chicago area, a mecca for Active Surveillance.

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How about lucky in love?

I recently did a post in The Active Surveillor about how my wife Judi supported me during my past 14 years on Active Surveillance.

But in the post, I came off Pollyannaish, having an unjustifiably optimistic outlook and a tendency to find the positive in every situation. (Named after the title character in the 1913 book, “Pollyanna.”) I was focused on my experience.

That’s not everyone’s.

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Did you face more of a struggle to reach a consensus with a spouse re AS?

I am curious about your experience on the AS RR. Let me know what you think: Please answer the questionnaire here: https://forms.gle/ff2SGLT8285ngyMF9

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After the post came out, one reader said: “This is an interesting and endearing story, Howard. It isn't my story. Despite [my wife] having many more medical issues than I have, she was in favor of a prostatectomy from day one. AS concerned her, and she was never in favor of it. [His best friend was, for sure, my main support during this time.

“So, PCa was never a couple’s disease in this household. I’m sure every home is slightly different from the benchmark case if one exists.”

This is shocking, and this patient typically is a Pollyanna himself on other matters.

The note shocked me into going back in time and reviewing many of my encounters with other men with low-risk prostate cancer who went on AS or had considered it,

I realized I had spoken with many other patients with Gleason 6 or favorable 3+4 whose spouses offered no support. The partner feared the patient was putting his safety at risk, or the partner felt he or she couldn’t handle the burden of caring for a patient with cancer.

That’s why a group of us started the AS virtual support group from the AnCan Foundation, which meets weekly, and Active Surveillance Patients International, which meets monthly. I encourage anyone who’s not getting support or who wants to hear first-hand about coping with this disease to attend these meetings.

I should note that few partners/spouses attend these meetings for AS.

That’s why multiple support groups, including this newsletter, organized a beginner’s guide to AS, featuring Nancy White, an AS expert and spouse, and her patient-husband Larry White, MD, interviewing leaders in the field.

(The AS 101 video series is available at https://aspatients.org/a-s-101/).

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(Clockwise from upper left: Epstein, Helfand, Showalter, and Pavlovich.)

Clock is ticking: The Active Surveillor’s ‘AS 25’ webinar coming up Jan. 4, 2025

By Howard Wolinsky

Paid subscribers and founding members get a free pass to “AS25,” a special program this newsletter is hosting noon-1:30 p.m., Saturday ,Jan. 4, 2025.

If you want to join us, get a paid subscription here:

This is the first such program TheActiveSurveillor.com has hosted. I am providing a premium to paid subscribers and trying to keep this newsletter afloat.

If you can’t afford it, or have special circumstances (such as living in a country facing a banking boycott from the U.S. or are a “working” musician), let me know and we’ll work it out.

The main point of linking subscriptions to free entry to the program is in effect making a donation to keep this newsletter afloat. Sorry. It may seem free, but I devote considerable time to producing the newsletter two or three times a week, turning down more lucrative work.

I will report on any news coming out of the webinar.

One bit of the news. Famed uropathologist Jonathan Epstein, MD, is making his first appearance at a patient meeting in almost two years. He had kept a low-profile since resigning from Johns Hopkins in February 2024 following a dispute with Hopkins, his professional home for almost 40 years.

Dr. Epstein will be speaking on a panel on what happened in prostate cancer in 2024 and what’s on tap for 2025.

Previously announced panelists are:

—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.

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Unsolicited testimonial

"I support your work bcause you are so insanely busy jumping from one topic & idea to another. You always manage to find something that I find interesting & useful. I also have the privilege to throw out possible subjects for an article you might write. You are able to pull strings to get a number of interesting & verbal people together for a chat that a schlub like me can join & ask questions about."—Ken Mason, moderator, AnCan.

Ken, Thanks for the kind words. Keep your ideas coming. Howard