'The poster child for AS'

I transformed my anger into advocacy

By Howard Wolinsky

Superman came to Smallville via a spaceship as his native planet Krypton was blown to smithereens. Spider-man came to be when news photographer Peter Parker was stung by a radioactive spider. Batman (Bruce Wayne) became a super-crime fighter after he saw his father and mother killed in cold blood on the mean streets of Gotham City.

I’m no superhero. But I am The Active Surveilor, only armed with information to help you decide how to deal with low-risk prostate cancer. Maybe someday there will be a graphic novel on my odyssey from being a medical reporter on a major metropolitan newspaper to an active surveillance advocate.

But like everyone else I have an origin story. No spider bites or escapes from an alien planet that was blowing up. 

A friend asked me yesterday about my “origin story” regarding prostate cancer. Here it is.

Four things happened that drove me to take on advocacy and my secret identity as The Active Surveillor.

-- Item #1. In 2010, I was diagnosed with low-risk prostate cancer. A surgery-happy urologist and frightened internist put on what surely they thought would lead to a radical prostatectomy.

My PSA test had shot up in a year from 3.2 to 3.95. The internist freaked out. He sent me off to Dr. RP (his real initials and an abbreviation for radical prostatectomy), who called on a Friday night in December 2010 and uttered in a dead-serious tone those most dreaded words “You have cancer.”

It was at the end of an already difficult day. I had fired a contract for failing to execute on a home remodeling.

The urologist had me and my wife consult with him the following Tuesday. He showed us a DVD with his voiceover listing what seemed like a half dozen choices to consider: surgery, cryotherapy, and various flavors of radiotherapy.

The DVD failed to mention active surveillance, a protocol with close monitoring with PSAs, biopsies, and digital rectal exams.

Dr. RP called us into his office to discuss options.

He gave us the shtick, probably his usual patter: “I have good news and bad news. The bad news is you have cancer. The good news is I have an opening in my OR next Tuesday, and I can cure your cancer.”

Right. My cancer? A tiny speck--a single core--of Gleason 6, which some doctors even in 2010 didn’t think was a real cancer. RP never mentioned it was low-risk, but he was shuffling me off to the OR where I faced risks for side effects such as impotence and incontinence for unnecessary surgery. (Most men diagnosed with prostate cancer have low-risk cancer. Six percent of us then chose AS. Now, about 55% do, a shadow of the 94% in Sweden.)

He nearly fell out of his chair when I asked: What about active surveillance?

He said: “I don’t support that modality.” I asked about an MRI, which just was being introduced into the prostate world. He said he didn’t have access to MRIs locally.

Here’s what I did right: I brought my wife Judi with me to witness the visit and take notes. I also recorded the visit in case I needed to refer to it.

I had done my homework when my PSA was rising. BTW, it dropped down to 3.6 as things were developing. I learned about AS. I was a medical writer for the Chicago Sun-Times so I knew how to dig out research.

--Item #2. I learned that Dr. Scott Eggener at U Chicago was an advocate of AS. I got his second opinion the next day from seeing Dr. RP. I had planned it.

Eggener diplomatically said I would fare well with surgery. But he said he didn’t think I needed surgery. He shared some studies showing the benefits of AS by Dr. Laurence Klotz, of Sunnybrook Hospital at the University of Toronto.

Dr. Eggener said I was “the poster boy for AS.” He predicted that in 10 years my cancer would likely would not have grown. I took a leap of faith in science.

In fact, 10 years later, the cancer seemingly has disappeared. Some docs suggested I had had a remission--while others insist my cancer was just hiding.

On my 10th anniversary on AS, Eggener said: “I saved you from the surgery. I wish I could have saved you from all the biopsies.” Back then, I underwent annual transrectal biopsies for five years facing risks of sepsis and other infections. I have not had a biopsy or MRI in six years and follow my cancer with annual PHI (Prostate Health Index) tests, a more sophisticated PSA.

I was angered about how close I came to unnecessary radical surgery, a bloody and long operation with risks for horrible side effects, including penis shortening, loss of libido, impotence, and incontinence. Even a small risk of death.

I started to write on Facebook about my adventures in Prostate Cancer Land and my shifting PSA scores, which rose as high as nearly 9 but eventually settled down to below 5.

One of the lurkers in Facebook was an old friend, Peggy Peck, a founding editor at MedPageToday.com, a doctor news publication.

I met up with Peggy at a medical journalist meeting in Cleveland back in 2016. At that point, I had left with a buyout the Chicago Sun-Times, my home base for more than a quarter-century, where I had been nominated twice for the Pulitzer Prize for exposes on the American Medical Association. (I have written two books about the AMA. Let me know if you want to buy my latest: “Contain and Eliminate: The AMA’s Conspiracy To Destroy Chiropractic.”)

Peggy proposed I do a column “A Patient’s Journey” describing my continuing adventures. I resisted, but the column was a hit. Peggy is always right.

Mike Scott, an early advocate of AS and head of Prostate  Cancer International, picked up on my column and nominated me to be the first patient to speak to ASCO (American Society for Clinical Oncology) Genito-Urinary meeting in Orlando in 2017.

So it came to pass that I was up on the stage before an audience of more than 2,000 with Dr. Klotz and other top docs in urology and radiation oncology.

--Item #3. I had worked out my appearance on stage with the moderators. I was supposed to speak about a half-hour into the program.

But they forgot me. An hour in, I realized I had to do something. So I grabbed the mike and went on a seven-minute rant on how they had a patient on stage and forgot me. I told them, they don’t listen to patients.

I wrote this article: https://www.medpagetoday.com/hematologyoncology/prostatecancer/63251

My anger was growing.

Others wrote about my spontaneous, impudent presentation.

At the time, I was teaching grad students interested in medical writing at Northwestern University’s famed Medill School. I virtually never checked my email at Medill.

—Item #4: But I did one day and found a message from Thrainn Thorvaldsson, a businessman from Iceland who started the first support group in the world devoted to active surveillance.

He had heard about my stand against the docs at ASCO. I was the talk of a meeting he attended in LA of Prostate Cancer Research Institute

I spoke with him and we hatched the idea that became Active Surveillance Patients International (aspatients.org), an international patient education and advocacy group. Mark Lichty and Gene Slattery were our co-founders.

ASPI began to blossom last year with educational programs, drawing men from 16 countries--from Canada and the U.S. to Belgium, Italy, India, Australia and Hong Kong. (Contact Mark at mlichty@aspatients.org to join us and make a donation. We run ASPI on a shoestring.)

This led to the formation of the weekly AS virtual support group on the AnCan platform. (Contact Joe Gallo at joeg@ancan.org. Again, I urge you to make a donation.)

Meanwhile, we’re making an impact on the future of AS. Mark, Joe and I, among others, have been providing feedback to a PCORI-funded study by Prostate Cancer International/University of Maryland and Movember, which is a major funder of research that has finally trained its attention on AS research. These are going to be game-changers that will put AS on the research priority list. 

So this is how I came to be The Active Surveillor.

To read more: Check out my first-person article in STAT News: https://www.statnews.com/2022/01/11/active-surveillance-for-prostate-cancer-the-gift-that-keeps-on-giving/

Also, Jane Brody at NYT wrote about me: https://www.nytimes.com/2020/03/02/well/live/before-prostate-surgery-consider-active-surveillance.html

Feel free to write me at Howard@TheActiveSurveillor.com

Together, we can help men benefit from AS and avoid scalpel and radiation.