ASPI honors pioneers: its late medical advisor, Gerald Chodak, MD; Laurence Klotz, MD AS 'father'

The story behind the Chodak Awards story

(Editor’s note: On May 6, ASPI (Active Surveillance Patients International) honored Laurence Klotz, MD, of the University of Toronto and Sunnybrook Hospital, with the first Dr. Gerald Chodak Active Surveillance Pioneer Award. Dr. Chodak was ASPI’s first medical advisor. The virtual ceremony was an opportunity to honor Dr. Klotz as well as to remember Gerry Chodak. ASPI is showing the event on video at: https://aspatients.org/chodak-award/)

By Howard Wolinsky

Back in the 1980s, I was a young medical reporter on staff at the Chicago Sun-Times.

I sometimes would go out to the University of Chicago in search of news stories. I met up with Gerald Chodak, MD, an up-and-coming urology professor and researcher. 

Gerry stood out from the crowd. He was a flashy dresser, a fabled dancer (he met his wife Robin while tango dancing), a superb athlete, an artist, and a hard-nosed scientist, who challenged his colleagues with some radical ideas. 

Early on in the spread of screening with prostate-specific antigen (PSA), he warned of patients with localized prostate cancer ending up being overdiagnosed and overtreated with potentially disastrous results--an epidemic of impotence and incontinence.

In 1994, he wrote a paper that appeared in the New England Journal of Medicine, (https://www.nejm.org/doi/full/10.1056/nejm199401273300403) using a conservative approach of monitoring these patients who likely could live with this disease and not die from it.

This triggered a huge response and backlash amongst urologists. Gerry had placed a target on his back that ultimately would contribute to his being drummed out of the University of Chicago.

Ultimately, it led to the idea of “active surveillance” (AS)--close monitoring of low-risk prostate cancer-- in the late 1990s, named by and developed by Laurence Klotz, MD, of the University of Toronto.

Klotz considered Chodak his mentor and friend. Chodak died in 2019 from an aneurysm at age 72. (His obit: https://www.medpagetoday.com/special-reports/apatientsjourney/82547)

Klotz recalled:  “Gerry was a pugilist. He loved the battle. He was never intimidated. And he also had a somewhat jaundiced view of the medical establishment in urology. There was the royalty of prostate cancer … genuine giants. They made huge advances in the field but they had a very dogmatic view that all patients diagnosed with prostate cancer must be treated or they will die.”

Klotz and others, including Peter Albertsen, of the University of Connecticut, Peter Carroll, of the University of California, San Francisco, and Ballantine Carter, of Johns Hopkins, helped advance AS. Chodak had provided the seminal thinking that has emerged as a revolution in patient care, with patients learning to co-exist with their cancers.

After years of languishing in academic practice, AS has gone mainstream in the past five years, with 60% of eligible patients now choosing AS. Of course, that means, 40% of patients still are choosing to be treated and risking serious side effects. And it is a far cry from the 90%-plus acceptance rates in Holland and Sweden.

***

Flash ahead to 2010. Gerry published his book, “Winning the Battle Against Prostate Cancer.” He asked me to write a blurb for it. I was honored to do so.

By then, at age 63,  I had been diagnosed with low-risk prostate cancer. I had a single-core of Gleason 6. Less than a millimeter. (That so-called cancer was never seen again in five other biopsies.) 

A local urologist tried to pressure me into his OR for a radical prostatectomy--he said he could “cure” me “next Tuesday.” He must have been shocked when I asked about the possibility of AS. “I don’t support that modality,” he said.

I had planned ahead. The next day, I got a second opinion from Dr. Scott Eggener at UChicago. Diplomatically, he said I might benefit from surgery.  But he said I was the “poster boy” for AS. He said I likely didn’t need surgery.

He predicted that in 10 years my cancer wouldn’t grow. He nailed it.

Behind the scenes, I got second and third opinions from Gerry Chodak. In the beginning, he put me at ease when he said: “When I (Chodak) get (my prostate cancer), I want what you have.”

Gerry was a patient advocate. Here in Chicago, there was a successful support group called Why me? Breast cancer support. (I wrote about them early on in the Sun-Times.)

Gerry heard the question these women asked. He and his patients answered with a support group for patients with prostate cancer--Us TOO, which pioneered peer support for prostate cancer. (Us TOO recently merged with ZERO.)

So when, Thrainn Thorvaldson, Mark Michty, Gene Slattery and I started ASPI (Active Surveillance Patients International) in 2017, I invited Gerry Chodak to be our medical advisor. He didn’t hesitate.

***

I had been wondering if ASPI could do something to honor Gerry and other pioneers of AS.

I proposed ASPI honor Gerry with an award in his name. Robin Chodak, Gerry’s widow, endorsed the idea and donated a piece of Gerry’s art, a decorative glass bowl emphasizing blue, the designated color for prostate cancer. Gerry was not only a world-renown physician-scientist but a serious glass blower and painter.

We recruited a committee: Mark Lichty and recruited a committee: Robin Chodak, a grief coach and author; Mark Lichty, co-founder and chair of ASPI; Howard Wolinsky, ASPI co-founder and editor of TheActiveSurveillor.com; Paul Schellhammer, MD, an advanced prostate cancer survivor and past president of the American Urological Association; Ericka Johnson, PhD, a social scientist at Linköping University, who studies prostate cancer and authored “A Cultural Biography of the Prostate”; James Schraidt, a patient advocate, former chairman of Us TOO and now a board member for ZERO: The End of Prostate Cancer; and ​​Govindakumar Ramakrishna, a patient advocate from Canada and India.

We had a world-class slate of nominees. Klotz was the unanimous choice as the first recipient of the Chodak Award.

We held a virtual ceremony to present the award.

I told the 20 attendees: “Both (Chodak and Klotz)  put their careers and reputations on the line to advocate for patients. Hundreds of thousands, if not millions, of patients, have benefited from this revolution in patient care started by these doctors and other pioneers.”

Mark Lichty, ASPI chair, said, “Dr. Klotz was so dedicated that many years ago he chose the patient over the knife when active surveillance was appropriate. Drs. Chodak and Klotz risked their professional reputations when advocating for active surveillance when it was little understood and much maligned in the medical world. Millions of us owe a deep debt of gratitude to these two doctors who faced adversity in furthering their vision to help patients avoid unnecessary surgery and radiation therapy with all the side effects.”

***

Robin Chodak, the doctor’s widow, said, “I am so pleased that Gerry’s philosophies, his legacy, his ideas about prostate cancer are carried on. Gerry was never, ever afraid to buck the system regarding anything. He was a man of science. And he particularly cared about patient education, but what was most important to him was what was best for the patient and many times that meant no surgery.”

She said to Klotz: “We’re honored that you are our first recipient. Gerry left a big impact on many lives and his message is and will always be to just embrace life, love it, always do your best, be kind. He was an amazing doctor and an amazing human being. I want that to continue. We all get inspiration from him and his philosophies and his life.”

Klotz said of the bowl: “It’s the blue of prostate cancer. It’s a spectacular piece of art and I’m very privileged to have it. It fits inside a place in my home and it’s something special. The workmanship is really outstanding. It’s a perfect piece.”

***

(Laurence Klotz, M.D. Note the glass bowl blown by Dr. Chodak)

In his remarks, Klotz described the development of AS: “We came up with an idea which at the time didn’t seem particularly original or impactful, which was to say, we’ll follow these guys. We’ll see if most of them have low-grade cancer. They have low PSA. We’ll track the PSA. We’ll repeat the biopsy. We’ll treat them if they look like something is changing. So, we adopted that.

 “It’s no accident that it was a multidisciplinary group – me and some radiation oncology colleagues, who were a little more open to different perspectives when you are dealing with people from different specialties. After about four or five years, we’d accrued 250 patients. No one had died. We had our first publication and then frankly, all hell broke loose over the next five to 10 years.”

Klotz said he was helped by the fact he had been a trained debater in high school and college.

With AS, he spent a decade of debating the lions of prostate cancer, including  Patrick Walsh, MD,  of Johns Hopkins, who in 1982 performed the first nerve-sparing radical prostatectomy, and William Catalona, MD, of Northwestern University, who introduced and promoted the use of PSA screening for prostate cancer.

 “At one time I had Pat Walsh on one side and Bill Catalona on the other, and it was like one of them was pinning me down and the other one was taking potshots at me. I walked off the podium really on the verge of being sick to my stomach. I thought what am I doing? These guys are so powerful this is going to be the end of my career,” recalled Klotz.

“It turned out in retrospect, those were the most important, defining moments of my career because I was right. And people saw that. And also, you get a reputation for having cajones and being willing to stand up to these far more senior and more august and well-known individuals. Gerry was really the inspiration for that, I would say. I saw that one could do this. No one blew up your car, called your chairman to insist you be fired, and so on. 

“Gradually, of course, this word got around that there was a different strategy. A lot of it was patient-driven. I should also say, I think, that this notion of the patient support group - a lot of the credit for that goes to Gerry. The idea that patients should get together and share their experiences and form some kind of organization was very novel. As I recall, I first heard about this from Gerry. The whole thing started with him in Chicago and it’s become a worldwide phenomenon. The remarkable thing in this whole story is that what started out as a minority opinion that was heavily criticized. I remember Bill Catalona said to an audience, I was up on the podium with him, ‘People are going to die of this disease and the responsibility for that will be on Dr. Klotz’s shoulders.” Quite a serious accusation. 

“That has not happened. And now we have one of the criticisms of the active surveillance strategy is that we were reporting too early, that it takes longer for patients to get advanced disease and die. And if we just wait long enough we’ll see patients will start dying from prostate cancer. That has not happened at all.”

…

At urology meetings, Gerry Chodak, Laurie Klotz, and Tom Keane, now chairman of urology at the Medical University of South Carolina, had formed what they called “the Gang of Three.”

Tom recalled meeting Gerry in the mid-1990s: “I was extremely impressed by the way [Gerry] handled himself and the questions he asked and the frankness with which he approached the problems. Basically, when they tried to shut him up, he wouldn’t shut up which was pretty impressive given the people who were in the room! I subsequently met him the following evening and we had a drink. That was the beginning of many drinks that we had together, always at meetings and always enlightening. I would say one of the things about Gerry was he was a man of all seasons. He was never afraid to take up a challenge. He was never afraid to defend himself or someone who he felt was being unfairly treated.” 

Keane said Chodak “paid a heavy price for his views in a lot of circumstances. Lesser people would have shut up and sat down. Not Gerry. When he started treating people and started telling them they didn’t need to have radiation or surgery, that was a reasonably large backlash, which now, thank god, we do have a much clearer idea of who does and who does not need to be intervened with regarding prostate cancer. Gerry was the one who started it all and I think he started us all thinking.”

He added: “Gerry was one of the best people you could go out with at night and it was just fun from the beginning to the end. 

“I remember one evening. It was about 10:00 and we were in Key Lago for a meeting. Gerry would be walking into this bar where there was music playing. Gerry started to dance. I had never seen Gerry Chodak dance. He was without doubt one of the finest dancers I’ve ever seen. I did not get out of my seat because I didn’t want to look like a buffoon trying to copy this. I kid you not, the ladies lined up to dance with him. Some of them were 60 and some were 20. He spent at least an hour on that dance floor. And that man could dance. That was one of my lifetime memories.

“He was also a very good tennis player. If you played him at tennis, one of the things he loved to do with me is – I’m not very talented but I tend to be determined – run me around from side to side to side to side of that golf course. Generally, we’d be playing in Florida, and by the end of it, I needed an IV to replace some of the fluids that I lost.”

….

Klotz had considered himself a good tennis player—until he met Gerry Chodak: “I thought I was not a bad player until I went out on the court with Gerry. I don’t think I got one game off him. He was an incredibly talented athlete. I am no golfer although I like golf. I would play, at least on the tennis court, I could try and hold my own. On the golf court, I was simply slaughtered. Never really an issue.”

Klotz also learned about patient care from Chodak on the golf course.

“I recall his phone started going off. Who is calling him? Patients! This to me was a novel thing. As a high-powered, essentially world-famous surgeon, you would give your patients your cell phone number? And I said, your patients have your cell phone number? And he said, of course. They have to get ahold of me sometimes. That was also out of the normal thing then which was the doctor was relatively inaccessible. God forbid your patient should have your cell phone number and call you on the golf course. For him, this was completely normal.

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How about signing up for a free AnCan webinar on how lifestyle can affect prostate cancer?

AnCan is presenting a program on lifestyle choices and all grades of prostate cancer at 8-9:30 p.m. Eastern on May 31.  Register at: https://bit.ly/3KkxcfC

The webinar, entitled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer," features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg,  assistant professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.

Did you miss the best program on AS to date: “Your Voice in the future of Active Surveillance,” on April 22.? Here’s the link: https://aspatients.org/meeting-videos/

A Who’s Who of experts joined the conversation along with patients and advocates, who were not too shabby either.

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Active Surveillance Patients International and the AnCan Virtual Support Group for AS are teaming up for a program on BPH, an enlarged prostate, a not uncommon problem in patients on AS.

It’s a drop-in First Wednesday meeting. Go here for directions to the Barniskis Room to attend the free program, featuring BPH guru, Dr. Steven Kaplan. Go to: ancan.org/barniskis

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