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by Howard Wolinsky   |   July 23, 2020

Transforming from  journalist to activist for active surveillance for PCa

Ten years ago, I got “the dreaded call” on a Friday night from a local urologist in a suburb outside Chicago. He started speaking in mournful tones.“You’ve got cancer,” he said. “Can you come to my office next Tuesday to discuss your options?” After my PSA had risen to 3.9, my family physician freaked out and referred me to this young, University of Chicago-trained urologist. He gave me a needle biopsy that was inconclusive. I had a second opinion at Johns Hopkins that said there was no sign of cancer but only of a then suspected pre-cancer. The pathologist recommended that I get a follow-up in six months.

I did. The finding was I had a tiny sliver — less than a millimeter — of cancer in only one of 14 needle biopsies. The way the urologist talked, it sounded life-threatening. It wasn’t. It was a slow-growing cancer. Cancer. We Americans have been trained to be scared when we hear that two-syllable, six-letter word. Cancer. Cut it out of me. Like yesterday.

Back in 2010, that was a typical response. I wasn’t the typical patient. I was a veteran medical reporter for the Chicago Sun-Times. I have written many stories about prostate cancer over the years. Of course, I was in my 30s and 40s. I never thought that PCa would be me. I was wrong.

My wife Judi and I went to the urologist’s office. He somberly led us into a room where he played a DVD with his voiceover offering the options for men like me. Options included radical surgery, a variety of flavors of radiation, and cryotherapy … maybe seven options all told were offered with potential side effects such as incontinence and impotence. When we consulted with the urologist, we talked the choices over. I finally asked what about active surveillance (AS).

What is AS anyway? It comes down to following the cancer with regular PSA tests and digital rectal exams plus occasional biopsies. MpMRIs were just starting to be used 10 years ago to monitor the disease.The private-practice urologist said he didn’t support that approach, which had only been available since the 1990s at a few institutions. In fact, maybe only 6 – 10% of men like me with low-risk Gleason 3+3 prostate cancer made that choice then, if it was even offered. You had to look for it in most cities.

Fortunately, a friend at the University of Chicago told me about a urologist there, Scott Eggener, who did offer AS. Eggener reviewed my case and deemed me “the poster child for active surveillance.” He showed me some research suggesting that if I went on AS, my condition could be essentially the same in 10 years. Now, here we are 10 years later, and he was right. In fact, I seem to be better. That cancer was only seen once and never again in other biopsies and MRIs. My PSA is stable at around 5.

I had gotten that dreaded “call,” and the funny thing is I felt “the call.” I transformed from journalist to AS activist. I spoke to cancer specialists at the American Society for Cancer Oncologists, In fact I gave them hell in my then new blog, called “A Patient’s Journey” aimed at doctors from the POV of a patient on AS, appearing in MedPageToday.com. 

I started to check out support groups and education groups for men on AS. I found them lacking in general. Many men on AS — both Gleason 6 and now Gleason 3+4 — find these places are great for men who are dealing with diapers, the effects of hormones and other treatments, but not so much for them. I observed this problem in groups that are more about advanced prostate cancer and not about men with low- and intermediate-risk. 

But support and education groups for men on AS have started in recent years to emerge from A-Z: AnCan, ASPI, Cancer ABCs, Inspire.com, MaleCare, PCaI,  PCRI, ZERO -The End to Prostate Cancer, and others to help men on AS. Things are changing in the AS world. Now, more than 50% of men with low-risk prostate cancer are on AS, and it’s 80% in some practices, such as at M.D. Anderson and Mass General.

I helped start Active Surveillance Patients International. I have even volunteered as a moderator at AnCan’s support group for men on active surveillance. I was a person who never saw himself at a support group. Spinning out of that, a couple other moderators, Joe Gallo and Mark Licty and I, planned a webinar series you should know about, “Active Surveillance & Beyond,” which begins later this month. It’s aimed at men on AS, those considering it, and their support providers.

We are kicking off the webinar series at 8 pm Eastern on July 30, featuring Dr. Peter Carroll, of UCSF, one of the founders of active surveillance. The series run through December 30, closing with Dr. Jonathan Epstein, the famed Gleason grader at Johns Hopkins. See the full program below.

We are proud to be working with AnCan, Us TOO International, ZERO – The End to Prostate Cancer, PCaI, ASPI and PCRI. So what are you waiting for? Register here https://bit.ly/2ZbuNQl. And if you have questions for Dr. Carroll, write an email to joeg@ancan.org. See you there.