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Patient Story: Howard Wolinsky

My Journey with Prostate Cancer and Active Surveillance

In December 2010, a radical prostatectomy-happy urologist told me he had “good news.” The doctor had just diagnosed me with a Gleason 6 prostate tumor. As for the good news? The urologist said he had an opening in his Operating Room the following week. I said “thanks, but no thanks.”

I had a second opinion lined up the next day at the University of Chicago. The second urologist said the tumor was low grade and low volume. He declared me “the poster child for Active Surveillance.” He said my condition would likely be unchanged in 10 years. It’s been nine years now, and the prophecy has held up.

In fact, in the following years, my PSA has dropped – biopsies and an MRI never again found a sign of cancer. It can be difficult for family and friends to understand that you won’t get the most aggressive treatment, and do nothing instead. Fortunately, my wife Judi has supported me throughout this experience.

In 2017, I became the first man with PC to speak on a panel at the meeting of the American Society of Clinical Oncologists. One problem: The doctors forgot I was there. With the clock running out, I fought to speak to the 2,000 oncology professionals in the audience, and criticized them for poor patient communication. I wrote about this incident for MedPageToday, in a post that went viral. In Iceland, support group pioneer Thrainn Thorvaldsson read this post and came up with the idea for ASPI.

 

What is your greatest personal or medical accomplishment achieved during your AS journey?

I have avoided a prostatectomy and other radical treatment for more than nine years.

 

Is there a misconception that you had originally believed about PCa or AS that you have since debunked?

No.

 

Can you describe one lifestyle change that has helped you effectively follow AS?

I was diagnosed with Type 2 Diabetes almost two years ago. I had to better control my blood sugar – so, using a keto diet and the drug Metformin, I reversed my diabetes and dramatically reduced my PSA. To my amazement, my urologist said I didn’t need a biopsy or an MRI.

 

How did your family or friends respond to the news about your PCa diagnosis, and your decision to follow AS?

My wife Judi and family have supported my decision. I know it can be difficult to buy into the idea of living with cancer, in a society in where cures are the perceived goal.

 

Do you have a motto or quote that gives you inspiration?

“Most men can live with prostate cancer and won’t die from it.” Also, “Get a second opinion, or keep asking questions. Eventually, you’ll get answers.”

 

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