This just in: My 'Academy Award' moment for advocacy and activism on behalf of patients on Active Surveillance

Thanks to PCRI and Harry Pinchot.

By Howard Wolinsky

I’m having my “Academy Award” moment on Sunday at the Prostate Cancer Research Institute meeting in LA.

PCRI is presenting me with its Harry Pinchot Award for Advocacy during its annual meeting. I won’t be there in person, but I taped a segment—literally my 15 minutes of fame, which you can watch at PCRI.org at 3:30-3:45 p.m.Eastern.

(Why not show up early and watch UCSF’s Dr. Matt Cooperberg present an update on Active Surveillance at 10:30 a.m. Sunday? Again, register at PCRI.org.)

I was touched and humbled that fellow prostate cancer patients nominated me for this honor, named after the late Harry Pinchot, PCRI’s patient advocate, who died from prostate cancer.

When Alex Scholz, CEO of PCRI, called me to tell me the news several months ago, something happened that usually doesn’t. I was silent. I was at a loss for words. (I know some of you won’t believe that.)

Then, something else happened. I kept my mouth shut and didn’t say a word for months. Again, not my usual M.O.  I’m a journalist who wants to get the story out. I kept this news to myself.

But I got a phone call and an email from friends this afternoon congratulating me. So I guess it’s time to share it with my readers.

I recorded my “Academy Award” speech Friday with Alex and Drs. Mark Scholz, co-founder of PCRI, and Mark Moyad, of the University of Michigan (Go Blue!), who runs PCRI’s sessions with finesse and humor.

Moyad and Scholz are the top banana and second banana, the Abbott and Costello, the Martin and Lewis, the Carney and Gleason (the comedian, not the blood test), and the Rubble and Flintstone of Prostate Cancer Comedy.

(Scholz (left) and Moyad, the straight man and funny man of prostate cancer.)

Alex, who calls me “The Legend,” [She’ll have to explain why] congratulated me for using my skills as a healthcare reporter to become an advocate to help my fellow patients with low-risk prostate cancer and their care supporters.

She said this was in line with the legacy of Harry Pinchot, who was PCRI’s first employee. Harry served as PCRI’s program director for over a decade and was known as “Helpline Harry” because of his devotion to helping other patients with prostate cancer.

Joel Nowak, founder of ABC Cancer, and Darry Mitteldorf, founder of Malecare, both strong advocates, are previous winners of the Pinchot Award. The award has not been given out since 2019.

(A great video on Harry Pinchot.)

Harry’s cancer and mine are very different. His was a killer. I am not even sure mine should be considered a cancer. Mine looks like cancer, but doesn’t act like one.

Harry and I became cancer experts to help ourselves and other patients. Harry dug into the medical library at UCLA to learn the latest information on prostate cancer. I used by medical reporting chops to find my way.

Harry’s goal, like mine, was to help patients be informed about prostate cancer so they can make the best decisions for themselves with the help of their doctors.

Harry lost his 13-year battle with prostate cancer in January 2008. Alex said the award recognizes “unsung heroes like Harry, who are out there making a difference in other people’s lives.”

I hope I have lived up to the high standards set by Harry and am honored to be put in the same class with him. I am not sure I am “unsung.” I have been crooning about AS for 13 years.

SUNDAY, SEPTEMBER 24, 2023

8:30am - 10:00am PDT | An Update on Active Surveillance with Matthew Cooperberg, MD

10:00am - 1:00pm PDT | Advanced Prostate Cancer Treatments & Side Effects with Eugene Kwon, MD

1:00pm - 1:30pm PDT | Sponsored Presentation

1:30pm - 1:45pm PDT | PCRI Honors Howard Wolinsky with the Harry Pinchot Award (My 15 minutes of fame.)

1:45pm - 4:00pm PDT  | 2023 Update | 10th Annual Moyad and Scholz Free for All! Any Question on Any Aspect of Prostate Cancer! | Mark Moyad, MD & Mark Scholz, MD

4:00pm | Closing Remarks

(PCRI agenda.)

I explained to the Scholzes the role PCRI and Dr. Scholz played in my “cancer.”

Dr. Scholz and his late patient Ralph Blum in August 2010 published the book “The Invasion of the Prostate Snatchers.” The book exposes the story of the overdiagnosis and overtreatment of prostate cancer, destroying the quality of life of a generation of men with urinary and bowel incontinence and impotence as a result of unnecessary treatment.

That’s my generation.

Starting in June 2010, when a biopsy showed I had what was then (not now) considered a precursor for prostate cancer. Six months later, at the recommendation of famed uropathologist  Dr. Jonathan Epstein, I had a follow-up biopsy that confirmed I had a single core of a microscopic amount of Gleason 6 (now Grade Group 1) “cancer.” I should add that cancer never again was seen in five biopsies.

A urologist, whom I refer to as “the Notorious Dr. R.P.,” urged on me to undergo a prostatectomy. STAT. He said he had a vacancy in the OR. He offered me a “cure” the following Tuesday.

I asked about Active Surveillance--close monitoring--I had done my homework as Harry Pinchot urged.

R.P. said he didn’t support “that modality.” (Note: He does now, 13 years later.)

At that moment, I was transformed from a health reporter and journalism professor into a patient advocate and activist.

I was angry. I didn’t want other men to undergo potentially treatments without knowing the potential consequences. I started a mini blog in Facebook that led husbands, fathers, brothers, uncles, and friends of my FB followers to me to hear about AS. It was urology’s best-kept secret. Only 6% of us went on AS then compared to 60% now in the U.S.

But we can do better. AS uptake is 90%+ in the UK, Sweden, and the state of Michigan now.

One of the “lurkers” in Facebook was Peggy Peck, a long-time friend and co-founding editor of MedPage Today, who in 2016 asked me to do a blog/column, “A Patient’s Journey,” for her online health news publication. The blog was a hit.

Thanks to MedPageToday and also Medscape Medical News for carrying my stories.

The next year, thanks to Mike Scott, Prostate Cancer International, a strong advocate, I was invited to speak to several thousand cancer specialists at probably the biggest prostate cancer meeting, the American Society of Clinical Oncologists Genitourology Cancers Symposium.

Sounds great, right? They had leading prostate cancer specialists on the stage with me, such as Dr. Laurence Klotz, “the father of AS.”  I was the first patient ever to speak to the ASCO GU group.

But the panel forgot me on the stage, as I sat right next to them.  As the clock was running out, I grabbed the mic, threw away my notes, and went on a seven-minute rant on how doctors don’t listen to patients. I didn’t realize it, but ASCO GU gave me a gift by forgetting me and pissing me off again.

(I wrote about this in my column: https://www.medpagetoday.com/hematologyoncology/prostatecancer/63251)

It was the rant heard ‘round the tiny prostate cancer world. Thrainn Thorvaldsson, a visionary patient from Iceland, who started a support group there, heard about my rant at the PCRI meeting. He contacted me, and we hatched plans for an international support and education group.

Thrainn recruited Mark Lichty and Gene Slattery at the PCRI meeting. We formed what became Active Surveillance Patients International (ASPI).

ASPI has reached thousands of men in 30 countries, from Canada to the UK, Australia and Russia, Brazil to Singapore and Pakistan.

I reminded the Scholzes and Dr. Moyad, that PCRI was an early supporter of ASPI.

I also stressed that none of us accomplish much on our own.

Now it’s time for my Academy Award speech:

I have to thank my wife of 52 years, Judi, who has put up with this nonsense that, at times, has been frustrating and distracting as I try to help other men with this complicated problem and field calls at home from anxious patients, including long-time friends and perfect strangers. Likewise, thanks to sons Adam and David.

Thanks to Drs. Scott Eggener, of the University of Chicago, and Brian Helfand, of NorthShore University HealthSystem, who have shepherded my prostate care over the past 13 years. Mark Zuckerberg and Facebook/Meta for giving me a space to reach other low-risk prostate cancer patients.

I told Scholzes and the Moyad that I thought that the Pinchot Award recognition that goes out to Thrainn, Mark, and Gene as well as to the AnCan Foundation, which worked with us to create the first AS-only support group that meets every week and holds webinars featuring the top leaders in the field. Also, thanks to Rick Davis, Joe Gallo, Jim Schraidt, Hugh Idstein, Garry Tosca, and Ken Mason, and all my friends in Canada, Phil Segal, Bob Allan, and Anthony Henry, and a long list of others, including the 1,000-plus readers of The ActiveSurveillor.com Substack newsletter.

I apologize to anyone I forgot.

The Scholzes are giving me the hook.

The late U.S. Supreme Court Justice Thurgood Marshall presented an award to me from the Bar Association of the 7th Federal District for my exposes on the abuse of patients in Illinois state mental hospitals. (My editor accepted in my absence.) Tipper Gore, then America’s Second Lady, and Brenda Edgar, Illinois’ First Lady, presented me with an award for coverage of mental health issues.

But I also treasure the recognition from PCRI in the memory of Harry Pinchot.

Watch the video award ceremony on Sunday, or when PCRI posts it online. It’s worth it, if for no other reason, to see the comedy routine of Dr. Moyad, a longtime follower of my blog in MedPage Today, who described me as an “educational tour de force.”

I told him Dr. Klotz calls me a “force of nature,” which I consider a compliment.

But Moyad insisted his appellation was better than Klotz’s.

You decide. (More details to come.)

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Don’t miss: Active Surveillance Patient International Sept. 30 webinar on lifestyle and low-risk PCa

By Howard Wolinsky

During September's Prostate Cancer Awareness Month, Active Surveillance Patients International (ASPI) is sponsoring a free webinar on lifestyle research and low-risk prostate cancer from 12-1:30 p.m. Eastern, Saturday Sept. 30.

There’s still time to register here for “Applied Research and Lifestyles and Low-Risk Prostate Cancer: 

https://zoom.us/meeting/register/tJwvdOGoqjwuE9CC8AI45nYdsj63e-iUnop6

(Dr. Stacey Kenfield, on right, & Dr. June Chan, working out. Mario Sanchez UCSF.)

The program focuses on how men can take some control over their lifestyle, including eating, exercise, and exposure to known carcinogens. The program also will cover how mental health behavior may help the patient adhere to a healthy lifestyle. Please submit any questions ahead of the program to contactus@aspatients.org.            

The program includes:

—Dr. June Chan, of UCSF, on “The Role of Exercise for Deterring Prostate Cancer Progression/Death”;

—Dr. Stacey Kenfield, of UCSF, on “The Role of Diet for Men Living with Prostate Cancer”;

—Chan on “Lifestyle Scores & Prostate Cancer Progression”;

—UCSF dietician Greta Macaire on “Practical Advice on Diet for Men Living with Prostate Cancer”;

(UCSF dietitian Greta Macaire)

For more information:

Meanwhile, get the UCSF pamphlet on diet recommendations for men with prostate cancer: https://urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/basic-page/diet-recommendations-pamphlet.pdf

And diet tips:

https://urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/basic-page/eating-tips-english.pdf