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Lessons Learned Along the Road Less Traveled

By Howard Wolinsky

 

Nine years ago, I stood at a fork in the road.

I chose the road less traveled, though my doctor at the time had other plans for me. I had been diagnosed with what I now know is a low-risk, early-stage prostate cancer. It seemed very scary in December 2010, not so much now. My PSA was just below the artificial cutoff of 4 and my Gleason score was a 6. I had 14 tissue samples biopsied. There was a one-millimeter cancer in a single core; the others were normal. (That cancer has not been seen since that fateful biopsy in 2010. But I am tagged forever as a cancer patient.)

The community-based urologist urged me to undergo a radical prostatectomy, perhaps the most common treatment then for patients like me. “I have an opening in the OR next Tuesday,” he told me as if I had won the lottery. He created a sense of urgency where none actually existed. Surgery was the easy road. It was the road most traveled in those days; less so now, but still too often these days. We live in a cancerphobic society, We have been trained to think that we need to get cancer out at all costs. In the case of prostate cancer in its early stage, scientific evidence shows that perception is wrong. It likely is true for some other cancers, such as low-risk breast cancer.

Here are some of the lessons I learned along the way.

 

Lesson #1: With low-risk and even some intermediate-risk prostate cancers, take your time. Go into slow-mo. Don’t rush into anything with low-risk prostate cancer. This is slow-growing cancer. You have time to weigh your options.

I knew to go in to see the urologist I had many choices. I could burn, freeze, irradiate and cut out the damned cancer. One choice, my choice, is what I call the Seinfeld option. Comedian Jerry Seinfeld, in his Zen way, said his popular TV program was a “show about nothing.”

My approach to dealing with prostate cancer was to do nothing but follow it. It’s called active surveillance. You don’t undergo aggressive treatments such as surgery or radiation unless cancer starts making its moves outside the prostate gland. I asked the urologist about active surveillance, monitoring cancer with PSAs, digital rectal exams, MRIs and biopsies. He simply said he didn’t support AS.

I previously talked it over with Gerald Chodak, MD, a visionary in conservative approaches to prostate cancer. I knew Chodak back when I was a young Chicago Sun-Times reporter covering the medical beat in the 1980s. He became my go-to advisor on my cancer. It turned out Chodak was my urologist’s professor at the University of Chicago. Chodak, who has retired but is still active in prostate education, told me: “Every man eventually gets prostate cancer. When I get mine, I want to have what you have.”  I liked that. Still, AS was not a popular choice in 2010. Maybe 5%, certainly fewer than 10%, of appropriate candidates then opted for AS. The fear of living with cancer was sending men to ORs and radiation suites.

 

Lesson #2: Get a second opinion. Or a third.

I knew there was an active surveillance program nearby at the University of Chicago. I had arranged for a second opinion the day after the first one with Scott Eggener, MD, a prostate expert who heads the AS program at U. of C. Eggener reviewed my PSA and previous biopsy results and gave me a digital rectal exam. He concluded I was the “poster child” for AS.  To back up his statement, he showed me a study by Canadian AS pioneer Laurence Klotz, MD. Based on Klotz’s research, I concluded my cancer likely would be unchanged in 10 years.  Now, based on Klotz’s groups, I think I would be safe possibly indefinitely. In other words, I could live with cancer and not likely to die from it. I was sold on AS.

 

Lesson #3: There is help out there if you need it. No need to go it alone.

I got a second opinion on my biopsy. I also got one on which treatment to choose.  This road can be lonely. But it doesn’t have to be. My wife Judi, my rock in all this, pointed out it was out of character for me to go to a support group. I, like many men, prefer to go it alone. Like John Wayne, pilgrim.

 

I agreed with Groucho Marx who sent a letter to the Friar’s Club in 1959: “PLEASE ACCEPT MY RESIGNATION. I DON’T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT PEOPLE LIKE ME AS A MEMBER.”

But as a blogger for MedPageToday.com, I checked out support groups. I liked what I heard and felt support in my decisions. (https://www.medpagetoday.com/special-reports/apatientsjourney/65629)

 

I have attended a few regularly since I wrote about them. I have found new information and support from men who joined the AS journey before me. And a lot of laughs about some serious decisions.

Check out Answer Cancer at https://www.ancan.org/support-calls and Prostate Cancer International at https://prostatecancerinfolink.net/2017/11/30/for-patients-on-or-considering-active-surveillance/

Another option is an online group: Us TOO Prostate Cancer Online Support & Discussion Community at Inspire https://www.inspire.com/groups/us-too-prostate-cancer/ In 2017, they added “active surveillance” as a search term.

 

I also found the breakout sessions on AS at the meeting in Los Angeles at the Prostate Cancer Research Institute, https://www.pcri.org A great place to meet other men on this journey and to get information on AS. Patients with low-risk prostate cancer can attend general support groups in person. But we sometimes find we are dismissed as “the lucky ones” as the group focuses on the serious side effects of aggressive treatment, such as impotence and urinary incontinence, the very things AS patients are trying to avoid.

 

That’s why business executive Thrainn Thorvaldsson started a pioneering support group for AS patients in Iceland several years ago. I met Thrainn via an email he sent after I wrote a MedPage blog about how I was snubbed as the first patient panelist at a major meeting of cancer doctors in 2017: (https://www.medpagetoday.com/hematologyoncology/prostatecancer/63251). Thrainn has had a similar experience.

 

Thrainn and I along with AS veterans Gene Slattery and Mark Lichty founded Active Surveillance Patients International in October 2017. PCRI is ASPI’s partner in promoting AS. Our goals are to promote the most conservative approaches possible to men diagnosed with prostate cancer, to share the latest AS research and to launch an international movement of men on AS to help us and our sons, the potential next generation of men on AS, to follow the path of AS.

 

So thus far, in 2019,  nine years out from diagnosis, I am glad I followed the road less taken. I avoided a prostatectomy and its side effects. I have had no treatment thus far and likely never will. I want to remain a poster child for AS. I have a lot more company on the road, as now more than 50% of U.S. patients like me opt for AS. Our ASPI colleague in Sweden states that 96% of patients there are on AS. So we have a long way to go.

 

The celebrated poet Robert Frost said: “Two roads diverged in a wood, and I—I took the one less traveled by, And that has made all the difference.” That has been my cancer journey. The road less taken was right for me and maybe for you. I have not looked back.

 

Howard Wolinsky is a Chicago-based author and medical journalist and adjunct professor at the Medill School of Journalism at Northwestern University. He is a co-author of the books “The Serpent on the Staff: The Unhealthy Politics of the American Medical Association” and with his wife Judi of the best-seller “Healthcare Online For Dummies.” Wolinsky recently won a writing award from the Association of Health Care Journalists and was twice nominated for the Pulitzer Prize for exposing financial and ethical scandals at the AMA while on staff at the Chicago Sun-Times. He can be reached at howard.wolinsky@gmail.com