Navigating the Waters of Active Surveillance: A Patient’s Story

Navigating the Waters of Active Surveillance: A Patient’s Story

Howard Wolinsky, credit Rich Chapman Photographers

By Howard Wolinsky

Thirty years ago, as a young medical reporter for the Chicago Sun-Times, I often wrote about that mysterious and troublesome gland: the prostate. I covered new prostate cancer treatments and benign prostatic hyperplasia. I interviewed physicians and patients about the concept of watchful waiting. It never occurred to me that the day would come when my prostate would pose problems.

But it did when I was diagnosed with a Gleason 6 in a single core in December 2010 at age 63. It was a shock. I had been a compliant patient. I had regular digital rectal exams and PSA tests. PSA testing revealed early-stage prostate cancer.

My family doctor referred me to a community urologist, who acted as though that single 1 mm particle of cancer was a ticking time bomb. In those days, not so long ago, most urologists took the same position. Despite the possibility of patients having an indolent or slow-growing tumor, there was a rush to the operating room.

“Why take the chance?” their surgeons asked.

When my biopsy results came in, the urologist called me. The doctor bluntly informed me I had cancer. Those six letters are a showstopper. The urologist requested that I come into his office. The wait was excruciating. Some patients may fill the time and scour the Internet for information. And worry. I didn’t. I networked with people I knew at local universities about options in prostate cancer care to prepare for the meeting with the urologist. I found out about active surveillance. I learned there were two active surveillance programs in the Chicago area. I scheduled a second opinion even though I was yet to have my first.

The day came to meet face-to-face with the urologist. My wife Judi and I went to his office, just a few minutes from our house in the far southern suburbs of Chicago. The urologist escorted us to a room with a DVD player. He switched on the video. The video featured descriptions of about a half-dozen treatment options for patients with prostate cancer. Surgery. Radiation. Seeds. Cryotherapy. And so on. My urologist presented the information in the video’s voiceover. But, significantly, the DVD was missing one option: active surveillance.

[Read: Why the United States and United Kingdom Use Active Surveillance Differently]

During the consultation, the urologist recommended surgery. He said he didn’t support active surveillance. I soon got a second opinion at a local academic medical center, where I met with the urologist who ran the active surveillance program there. He said I likely had a slow-growing cancer, and he recommended a program of PSA tests and digital rectal exams twice a year along with annual needle biopsies. He said that should provide early warning if the cancer were to become aggressive. There would be plenty of time to perform a prostatectomy if needed.

I was reassured when he said, though he couldn’t make promises, that based on the literature through 2010, my condition in 10 years probably would be the same as it was then.

I joined the active surveillance program. I was on prostate cancer watch. My new urologist was getting to know my prostate. Over time, all went well. The PSAs stayed within a range, dropping from a high of nearly 9 to 4.8 last October. The biopsies showed no cancer. My doctor told me I was “the poster boy for active surveillance.”

What I hadn’t realized was that I was a pioneer, participating in a new approach to prostate cancer care. After 3 years, my urologist decreased the frequency of biopsies. In 2013, he put me on a vacation from biopsies, which, of course, carry risks for bleeding, impotence, and sepsis (rare, but potentially fatal).

The evidence supporting active surveillance mounted. The word was getting out. I hear now that approximately 50% of men in my situation choose active surveillance. There has been a revolution in care for patients with low-risk, Gleason 6 prostate cancer.

But active surveillance isn’t for everyone. Not all patients can tolerate the uncertainty that the approach poses. Some men can’t accept the unknown. These men figure the risk of incontinence and impotence is worth the “cure.”

With active surveillance, you have to learn to live with cancer. That’s not the aggressive approach the public has been taught in the War on Cancer. Cut it. Burn it. Poison it. Don’t leave it in your body. Out, out damned cancer.

I’ve heard that depression is not uncommon in patients being monitored with active surveillance. Personally, that has not been my experience. On the other hand, I have spoken with many patients who have undergone prostatectomies who were depressed over the impotence that cost them their “manhood” and incontinence that infantilized them. Doctors need to be more aware and more sensitive to potential depression to help their patients through this.

There have been times when I have regretted ever having taken a PSA test. It marked me as a “cancer patient.” I have a “C” on my forehead. As a result, for example, I was unable to buy life insurance at a reasonable rate—even with an excellent prognosis. Would things have been simpler without knowing my rising PSA? You can’t undo it.

Meanwhile, I remained sold on active surveillance. But I, at times, encountered troubled waters in dealing with my urologist. One thing I felt lacking in my care was information about the genetics of my tumor. I have had a special interest in genomics professionally and personally. I have written many articles about genomics for a publication whose readership is molecular biologists.

I also was an early adopter of DNA testing. My primary interest was learning more about my family roots from testing by FamilyTreeDNA. But I gradually phased into medical genomics at 23andMe to learn more about my health issues.

I try to follow research on genomics and prostate cancer. I believe in the potential of genomics in cancer care. But I felt my urologist was not applying this sort of knowledge to my case. I occasionally write to researchers to ask questions about their genomic research. I recall one study that particularly interested me, showing the predictive value of certain genetic markers. I went to the raw data from my tests and found my markers matching those mentioned in the study. I shared the information with my urologist. He, more or less, blew me off. He said he was familiar with the study, which had just been published. He said my markers didn’t matter—since we already knew I had cancer.

When I was seeking a second opinion, the urologist exchanged emails with me. But after I switched to being his patient, I had the feeling he preferred not to communicate with me via email.

I didn’t often write to him. But when I did, he typically answered by saying we would discuss the question the next time I was in clinic, which sometimes was months away. I found this frustrating. In fact, I had a sense I was getting on his nerves.

One time I wrote a note with four questions. The urologist answered at 3 AM in a terse fashion. He responded something like this: “Y Y N.” But I had four questions. I wasn’t clear on which question had not been answered. So I was forced to write him back for the fourth answer. I sensed a doctor who was losing his patience.

Last fall, wearing my journalist cap, I interviewed two prostate genetics researchers at another well-known academic medical group for a story for a local medical magazine. I was surprised to learn that my single tiny cancerous core actually might have value in predicting how aggressive my cancer might be. That contradicted what my urologist told me. The researchers recommended that I see their clinical colleague, a urologist with a doctorate in molecular biology, who was knowledgeable about genetic testing for prostate cancer.

How does a patient feel about changing doctors? I felt uncomfortable and disloyal. The doctors at the new medical group assured me that this happens all the time.

I went to see the new physician to test the waters. We hit it off. He had an informal style. We instantly were on a first-name basis. These relationships vary from patient to patient and doctor to doctor. But I prefer a less starched-white formality than they have at the tertiary care facility I had been going to.

My relationship with my current clinician is new, but so far, so good. He responds quickly to emails. For example, I asked him in an email about the ProtecT trial. He told me: “It is not really a huge game-changer. … The implications for you are not great. Meaning, that there is currently no evidence that you will be progressing over the next 10 years. You are definitely (as best I can tell) in the favorable group.”

He, rather than his nurse practitioner– as was the case at the previous center–called me with the “good news” on my latest prostate MRI. Nothing visible. He called with more good news about my biopsy in 2016. I had high-grade prostatic intraepithelial neoplasia, which he told me was no big deal. He recommended a follow-up MRI and biopsy in 2 or 3 years. At age 69, this sounded reasonable to me.

On the genetics front, I tracked down my original biopsy slide, the source of the Gleason 6 score. My new urologist has told me we will discuss how best to use genomics to analyze this tiny bit of tissue. The waters of active surveillance, at least for the moment, are calm.

About the Author: Mr. Wolinsky is a Chicago-based freelance writer specializing in medicine and genomics and is a lecturer at Northwestern University’s Medill School of Journalism. He was the medical writer at the Chicago Sun-Times and has written first-person accounts for MedPage Today about being a patient with prostate cancer. He also has written for the Annals of Internal Medicine, ACP Observer, EMBO Reports, and many other publications. The Chicago Sun-Times nominated him twice for the Pulitzer Prize for a series of exposés about financial and ethical scandals at the American Medical Association. He is a co-author of The Serpent on the Staff: The Unhealthy Politics of the American Medical Association and a co-author with his wife Judi of the best-seller Healthcare Online for Dummies.