Reflections on a decade on active surveillance for prostate cancer

By Howard Wolinsky

What a difference a decade makes.

In 2010, 217,000 American men were diagnosed with prostate cancer. About half — 105,5000 — had low-risk cancer.

I was one of those men.

Let’s break it down further.

Of the 105,500 with low-risk cancer, 90–94% then opted for treatment, primarily radical prostatectomies, putting themselves at risk for erectile dysfunction and urinary incontinence.

Only 6–10% opted for the then relatively new approach known as active surveillance (AS): careful monitoring of the prostate gland with blood tests for PSA levels and digital exams every six months and random biopsies annually.

I was on the bubble in the summer of 2010.

Urologist and internist push panic button

My family physician had just pushed the panic button when my PSA increased over a year to 3.95 — just below the magical (and arbitrary) cutoff of 4 — from 3.1.

When I mention these numbers to experts these days, they just laugh at the hair-trigger reaction of the internist. They say this hardly could be considered a velocity issue, a much talked about concept 10 years ago and not so much now.

The internist referred me to a highly regarded local urologist. He performed a 14-needle biopsy under local anesthesia in his office. In fact, my wife Judi was in the room as the urologist zipped his biopsy gun. I tolerated it well, though these days I’d be surprised if my case would have gone this far.

The results were ambiguous. The only thing that sounded an alarm was the presence of prostatic intraepithelial neoplasia (PIN) that some but not all doctors then considered precancerous.

Jonathan Epstein, MD, the Gleason score guru from Johns Hopkins, reviewed my slides, concluding I should have a follow-up biopsy in six months.

I spent the summer and fall of 2010 in limbo. It was a boot camp for what was to come, learning to live with uncertainty and cancer.

I started to research my options should I be diagnosed with cancer. As a medical reporter for the Chicago Sun-Times, I was luckier than most men in my situation because I had easy access to experts and information.

I got in touch with an old friend, Gerald Chodak, MD, a prostate cancer expert, formerly of the University of Chicago, and one of the most controversial and cutting-edge thinkers in urology. He provided me with reassurance in the difficult days ahead.

Follow-up biopsy

On November 30, 2010, I had my follow-up biopsy. Another 14 needles up the rectum, like snaps of rubber bands to my numbed prostate. During the time since the first biopsy, my PSA had dropped down to 3.6.

Early in December, I got my results. I had the Big C.“Cancer!” My family doctor gave me the biopsy results during an office visit.

It was a shock, though it shouldn’t have been. About 35% of men at my age then (62) had some form of prostate cancer — even if they didn’t know it.

On Monday, December 6, I was in touch again via the phone with Chodak, who was retired from surgery and for the first time via email with Scott Eggener, MD, of the University of Chicago, an advocate of the emerging approach of active surveillance.

Eggener said: “Best case scenario would have been no cancer on biopsy, but take some comfort in that you’ve been diagnosed with very low-risk cancer. Regardless of what you choose to do, you are highly likely to have an excellent result.”

Then he gave me a big bolus of support. He said when his day came and he was diagnosed with PCa, he wanted to have what I have.

I don’t know about you, but in such conversations, the word “Cancer!” jumps out more than “low-risk.”

Then, Chodak reviewed the numbers with me. (I was amazed to find I had a transcript.)

“[Doctors] finally are recognizing that a large fraction of men are getting a treatment that they probably don’t need right away, maybe never,” he said.

He added that I likely was in the group that never would need treatment: “You have one out of fourteen biopsies showing a small fraction of cancer. At the age of 62, 35% of all men have that. And only 3% die of it. So that’s odds of you getting into trouble is maybe 1 out of 10 to 1 out of 15.”

Chodak noted that between 2005 and 2010, my PSA had increased by 20%, or 4% per year.

“The ones that we’re worried about are the ones that are doubling in two years or three years,” he said. “So, not only do you have only a small biopsy … but you have a PSA history that shows nothing changing. I mean, 3.1 to 3.6 is not a change. It normally goes up a little bit every year because of people getting an enlargement in their prostate.”

Reassured. For the moment anyway.

A few days later, on a Friday night, I finally heard from the local urologist in the Chicago suburbs, who triggered a bout of anxiety when he called me on a Friday evening to formally announce I had “Cancer!” I immediately lost whatever confidence I had as a newly diagnosed patient with low-risk cancer.

He said I was to see him the following Tuesday, December 14. Four days to worry — despite what Eggener and Chodak told me.

Room in the OR? No thanks.

When I saw the urologist, he gave me the good news-bad news shtick. “Bad news. You have cancer,” he said. “Good news. I have an opening in my OR next Tuesday.”

He said a radical prostatectomy was my best option — even though I only had a single core with one millimeter of Gleason 6 cancer. He acted as though I had a massive Stage 4 tumor.

The next day, December 15, I saw Eggener in his Hyde Park office. Looking at the same data the first urologist had, he said right off I

didn’t need surgery. In fact, he said I was the “poster boy” for AS. He showed me research from Laurence Klotz, MD, one of the godfathers of AS, that indicated my cancer would be the same in 10 years as it was that December day in 2010.

He was right. Cancer has never been seen again in a half dozen biopsies — though most doctors contend cancer is still lurking in my prostate.

There has been a great deal of change in the intervening years.

AS now considered standard of care

AS now is considered the preferred “treatment” for men with low-risk cancer. Now, about 60% of men with Gleason 6 cancers opt for AS — a 10-fold increase in a decade. That represents amazing progress in slow-moving surgical practice for slow-growing cancer. Nonetheless, there’s still a long way to go.

And more than 90% of those with very low-risk cancer choose AS. This is a dramatic change in a short period in a conservative field such as surgery.

Now, I used to have annual biopsies following an old protocol from Johns Hopkins. Now urologists try to space out the biopsies to reduce infections and also reduce risks for nerve damage that can cause erectile dysfunction. Many recommend two- to four- or five-year intervals between biopsies.

Urologists are moving away from transrectal biopsies — or “transfecal” biopsies, as some wits call them — which carry risks for infections and even sepsis and require antibiotics. Transperineal biopsies through the skin of the ‘taint are finally catching on. If I ever have another biopsy, I would go that route. Or I might have a new micro-ultrasound,

which may displace a mpMRI, which causes more anxiety in me than low-risk prostate cancer.

I have had Prostate Health Index or PSA tests every six months for 10 years — though I have had a COVID-19 vacation over the past year. I’ll soon go back to the PHI, maybe I switch to annual testing. That would save me for one 100-mile round trip to see my urologist.

Off the biopsy train?

I haven’t had a biopsy in four years and, at age 73, I may never have another unless my PSA spikes dramatically.

Peter Carroll, MD, of UCSF, another pioneer in AS, has declared he wants to get out of the “biopsy business.” Other urologists have told me the same thing. Eggener said he hoped to never do another. I know other active urologists who have moved away from biopsies altogether,

I can hear hundreds of thousands of men on AS cheering.

When I started, there were support groups for men with prostate cancer, such as Us TOO, founded by the late Jerry Chodak, but men with all Gleason scores attended. Those of us with low-risk disease and on AS fell to the wayside as those with more advanced disease told of dealing with diapers, erectile dysfunction, loss of libido, hot flashes, and “brain fog.” This is a tough disease for men with advanced disease.

I developed the idea of separate support groups for men on AS. AnCan and UsToo have adopted my idea. We now are holding webinars and support groups for thousands of men on AS. (Go to AnCan.org for more information.)

Men on AS have a different culture than those men with advanced disease. The sicker men sent a subliminal signal to low-risk men at support groups: “What are you doing here?”

I recently co-hosted an ad hoc AnCan/UsToo support group for ZERO — The End of Prostate Cancer’s annual Summit. Ironically, mainly men with advanced prostate cancer attended the session. One, a leader of a support group, said he tries to support men on AS. But he portrayed them as scared rabbits. I can see why when they are in a room filled with men describing the side effects of prostatectomies and radiation. I urged him to send those men to the AnCan/UsToo group (ancan.org),

Thrainn Thorvaldsson, Mark Lichty, Gene Slattery, and I organized Active Surveillance Patients International (aspatients.org) in 2017 to help men on AS. We are building bridges and holding meetings with men on AS in other countries, more than a half dozen so far. And we are having European experts speak to us about the differences in AS between countries and how incentives led American physicians to conduct so many radical prostatectomies.

A decade ago, mpMRIs were just starting to be used for targeted biopsies and to monitor known prostate cancer. There were no genomic tests yet. Now mpMRIs and genomic testing are routine.

Other changes coming for AS

In the coming years, big changes are in store for men on AS. These include greater use of transperineal biopsies to avoid infection, a phase-out of the transrectal (transfecal) biopsy, and reduced use of antibiotics; the micro-ultrasound that could displace mpMRI; new, safe contrast agents replacing gadolinium used with mpMRI; maybe liquid biopsies to help us avoid needle biopsies altogether; the potential use of newly approved PMSA (prostate-specific membrane antigen) to help light up tiny cancers, and likely the first vaccines to “cure” low-risk prostate cancer. Research is underway on immunotherapy and also a med for low-risk prostate cancer.

Maybe in the years ahead, we’ll get a definitive word on diet, supplements, and exercise. Meanwhile, they don’t hurt and may help.

That’s a lot of change for sleepy Gleason 6 cancers. Active surveillance as we know it will not be the same.

The biggest change of all may be the offing as well. With a lot of research, editorials, and arm-twisting, Gleason 6 prostate cancer may be redefined as NOT CANCER! at all. This has happened previously with bladder and thyroid tumors and even with Gleason scores lower than 6 that once were considered cancerous.

Judd Moul, MD, a urologist at Duke University in Durham, North Carolina, gave me pause and a glimpse at the future at an AnCan/UsToo Virtual Support Group recently when he said: “Just to play devil’s advocate, in my opinion, you should have never had that [first] biopsy. You probably would have never known anything was wrong with you, and you wouldn’t have 10 years of concern about this.”

Famed British urologist Freddie Hamdy told me that he expects that AS will become a modality mainly for men with favorable intermediate-risk Gleason 3+4 scores.

Eggener spared me from surgery 10 years ago with AS. Recently, he told me that he wished he could have saved me from the first biopsy and several subsequent ones as well as the cancer diagnosis to begin with.

He, Klotz and other leaders in the field are planning a coup of sorts by working to reclassify Gleason 6 as a non-cancer or a pre-cancer. Eggener said he has made this a “career goal.” He thinks he can overcome the pushback from other urologists and especially pathologists.

“It’s the right thing to do,” he said. Just like oatmeal.

Like guinea pigs

In a sense, we men now on active surveillance have been guinea pigs who may have helped future generations avoid a Gleason 6 cancer diagnosis and what that entails, including a psychological burden and risks from diagnostic tests, such as biopsies and mpMRIs.

Some men, especially those with a history of anxiety, find they can’t coexist with cancer and opt for “definitive,” aggressive treatments for an otherwise benign cancer. A redefinition of Gleason 6 could help them.

Whatever happens, I am grateful for meeting and becoming friends with many men with prostate cancer I have encountered since 2010. We are, as it’s said, “the reluctant brotherhood.”

I also have appreciated meeting many experts on prostate cancer as I have written a column on my “journey” for MedPageToday, organized webinars for the AnCan/UsTOO virtual support group for men on AS, and served as “consumer reviewer,” representing Malecare, for the U.S. Department of Defense’s Prostate Cancer Research Program.

Sounds like I am walking away? No. The fight has just begun.

In the future, if Eggener and his group succeed, men who today are diagnosed with Gleason 6 may not be diagnosed at all and will just live their lives free of the cancer label.

What a difference a decade makes.

Howard Wolinsky is a co-founder of Active Surveillance Patients International (ASPI) and is a moderator for AnCan and UsToo Support Groups for Active Surveillance. He writes a blog on AS for MedPageToday. He has won numerous writing awards, including from the National Press Club, the Chicago Headline Club, the American Bar Association, the Association of Health Care Journalists, and the American Heart Association. His new book “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic” is available for preorders at Containandeliminate.com.

Howard Wolinsky is a Chicago-based medical writer. He has been nominated twice for the Pulitzer Prize for articles for the Chicago Sun-Times.

More from Howard Wolinsky

Howard Wolinsky is a Chicago-based medical writer. He has been nominated twice for the Pulitzer Prize for articles for the Chicago Sun-Times.

Apr 20, 2020

Netflix’s ‘Grace and Frankie’ get a second opinion on their take on prostate cancer

By Howard Wolinsky and Mark Lichty

“Grace and Frankie,” the Emmy-nominated Netflix senior-centric comedy about love and life in the septuagenarian set, which includes the authors, has courageously has dealt with serious topics, such as divorce in old age, gay marriage, Alzheimer’s disease, and euthanasia, with deft and often humorous touches.

The show recently focused on a hot topic for elderly men and women (and men) who love them — cancer of the prostate, the finicky walnut-sized sexual gland that tends to become cancerous as men age. The program did not live up to its usual standards and did not…

Read more · 5 min read

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Howard Wolinsky is a co-founder of Active Surveillance Patients International (ASPI) and is a moderator for AnCan and UsToo Support Groups for Active Surveillance. He has won numerous writing awards, including from the National Press Club, the Chicago Headline Club, the American Bar Association, the Association of Health Care Journalists, and the American Heart Association. His new book “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic” is available for preorders at Containandeliminate.com.

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Howard Wolinsky is a Chicago-based medical writer. He has been nominated twice for the Pulitzer Prize for articles for the Chicago Sun-Times.

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Howard Wolinsky

Howard Wolinsky

Howard Wolinsky is a Chicago-based medical writer. He has been nominated twice for the Pulitzer Prize for articles for the Chicago Sun-Times.

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