Prostate cancer? You gotta' be your own advocate
John learns how it's done
By Howard Wolinsky
Sounds like the opening lines to a joke. But it was no joke for John McGeown:
A patient (John) walks in to see a urologist and radiation oncologist who run a joint practice.
So the urologist suggests that the man have radiation seeds implanted. But the rad onc said the patient wasn’t a good candidate for seeds and instead recommended external beam radiation treatments.
(John McGeown)
An oncology nurse practitioner, on the sly, strongly urged John to consider other options, such as active surveillance (AS).
John, 68, a retired machine operator for a major food company outside Chicago, looked online and discovered AS, the monitoring strategy of closely following low-risk to favorable intermediate-risk prostate cancer with regular PSA testing, MRIs, biopsies, and digital rectal exams. But his doctors insisted on radiation therapy and not AS.
John’s research led him to Joe Gallo and me, moderators in a virtual support group for patients on AS on the AnCan.org support platform.
(We’re the dynamic duo of AS—with Joe being Robin and me being Batman.)
John shared his PSA results (5.1 ng/ml) and his Gleason 6 score in a single core out of a mere six samples taken in a blind biopsy. He hadn’t had an MRI, which is pretty standard now to guide a biopsy.
We’re not doctors and don’t offer medical advice, but the information he shared suggested he needed a second opinion for his biopsy slides and also fresh eyes to review his case overall.
We sent John to Dr. Jonathan Epstein, pathology chief at Johns Hopkins, for a second opinion on his slides. And then Dr. Brian Helfand, urology chief at NorthShore University HealthSystem, who practices not far from McGeown’s home in northwest suburban Chicago.
Helfand, with Epstein’s report in hand, said McGeown didn’t need radiation or surgery and was a good candidate for AS.
John was angry at his first docs for steering him to treatment that posed potential side effects. (Radiation therapy can disrupt normal urinary, bowel, and sexual functioning because the prostate is so close to vital structures in the body. https://www.pcf.org/about-prostate-cancer/prostate-cancer-side-effects/radiation-side-effects)
How often do candidates for AS get steered into treatment with side effects? It appears to still happen a lot even as AS has been gaining popularity in the U.S.
About 268,000 men in the U.S. will be diagnosed with prostate cancer in 2022, according to the American Cancer Society.
More than half will be diagnosed with low-risk prostate cancer, just like John. Only 60% of these men opt for AS while 40% opt for treatment with surgery or radiation. (Back in the dark ages, in 2010, when I was diagnosed, even more patients, 90-94% headed for surgery or radiation therapy.)
Thanks to virtual support groups dedicated to AS, which Joe and I helped start at AnCan, and media coverage, patients are learning what their options are. (Statnews.com/2022/01/11/active-surveillance-for-prostate-cancer-the-gift-that-keeps-on-giving/)
Do doctors like John’s even offer AS as an option? It should be at least mentioned based on guidelines from the American Urological Association/American Society of Radiation Oncology and the National Comprehensive Cancer Network.
John essentially wasn’t told fully about his options in 2022, until he prodded his urologist.
AS wasn’t mentioned to me in 2010. I raised the option to my original urologist, who was no AS fan and seemed shocked that I mentioned it.
What was your experience?
Dr. Todd Morgan, Chief of Urologic Oncology at Michigan Medicine, said, “This scenario is unfortunately common (rad oncs and urologists are both to blame). We frequently see patients with low-risk cancer who were recommended to undergo treatment, then do their own research and come to us for a second opinion.”
Morgan said it's simply the general standard of care in medicine to discuss the pros and cons of all management options with a patient when they have a new clinical diagnosis.
Sadly, true in principle but always in execution. Unfortunately, the standard of care in medicine too often is not the standard.
John confronted his original urologist about AS. He recalled: “(The urologist) said: ‘There is an option called active surveillance, but if it were me I would do the seed radiation.’ Never did he suggest AS.”
John’s pathology reports indicate he had Gleason 6, which a growing number of doctors consider a fake malignancy: looks like cancer but doesn’t act like one.
The radiation doc then pushed John towards external beam radiation.
In retrospect, John said the two doctors struck him as “used-car salesmen.” The worst a car salesman can do is stick you with a lemon, not send you for unnecessary treatment.
John observed: “Because I'm street smart and know how people operate, I think the cancer nurse and [the rad onc] are intimidated by [the urologist] because he is kinda’ like the school bully that everyone kept away from. I had a school bully and I kicked his ass and then he wanted to be my friend.”
[John, I feel your pain, The same thing happened to me in high school gym class on Chicago’s South Side. A bully in white gym shorts and white T-shirt, built like a refrigerator, decided to hassle me on the basketball court. He was about a foot taller and 100 pounds heavier than me. He punched me out of the blue. I took a step toward him. He took two steps back. Next thing you know, I found myself in a scuffle with all my friends rooting me on and not breaking it up. It ended with a couple of facial scrapes. But no bully ever bothered me again. I have had this response to bullies my whole life.]
Some professional guidelines do encourage doctors to present all options to patients. Others don’t.
Why do urologists and radiologists not mention let alone recommend AS?
Could it be greed, a quick cash infusion for the doctors even though long-term urologists can earn more potentially from AS?
John wrote in his Scottish brogue: “I’ve kinda’ been told that its money-driven. Can you believe they do that for money and screw up people's lives?”
Maybe so.
My first urologist trained at the University of Chicago, where the late Dr. Gerald Chodak helped the epidemic of overtreatment of prostate cancer.
Yet this young urologist didn’t mention AS. He recommended surgery the following week. I had to bring up AS. “I don’t support that modality,” he said. The next day, I got a second opinion at the University of Chicago recommending AS. Dr. Scott Eggener told me I was “the poster boy for AS.”
Was my first urologist protecting my health in these early days of AS by recommending “definitive” treatment? Or was he looking for a payday? I can only guess.
Are the doctors well-intentioned and acting in the best interest of the patients? Do they think they are following the Hippocratic oath, “Do No Harm” when they fail to mention AS?
Another issue: John encountered obstacles in obtaining his slides and records to forward to Epstein. Support groups hear about this all the time.
If you get the runaround when requesting your medical records, push back. Or if the hospital has your info, go to the office for medical records.
I contacted an old friend of mine, George Annas, JD, director of the Center for Health Law, Ethics & Human Rights at the Boston University School of Public Health, School of Medicine, and School of Law, who wrote the book “The Rights of Patients.”
(Back in the 1970s, he inspired me to apply to law school to become a health attorney. I got into a half dozen schools. But instead, I stuck with journalism, figuring I could raise more hell as a journalist.)
George told me: “The medical records are the patient’s records, and at least for the last 20 years the patient has a legal right to inspect them and have a copy of them to keep.” (He devotes a chapter in his book to this, and HIPPA and state laws allow you access to these records though you may be charged for them.)
On April 28, John wrote to Joe and me: “It has been a blessing hooking up with AnCan and especially you guys. Yesterday, I had my second opinion with Dr. Helfand. What a nice guy and informative AND put my mind at ease a lot. He had my chart in front of him and did tell me that I absolutely do NOT need any seed radiation or spot radiation or even close to that.
“I fall right into that category of AS (you guys told me I would likely be in that place).”
John said he “shit-canned” his prostate doctors and also his family doctor for giving him “bum steers.” It’s also your right to fire a doctor.
John added: “I will be getting an MRI and a biopsy in the near future so they can establish a baseline. So, I am happy about all this. Thank you so much guys for putting me onto Dr. Helfand and Dr. Epstein as everything looks fine. I will look forward to another phone call with you guys. I will treat you to Portillo's (I'm not kidding)”
[Portillo’s is a favorite Chicago-style hot dog joint. Helfand, who is my urologist, and I always talk about having lunch there.)
In the end, John became his own advocate, following the AnCan credo. He got second opinions on his pathology report and also the proposed treatment. He pushed back to get his medical records. And he fired doctors who gave him bad advice, whatever their motives.
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.
Dr. Kerry Courneya, a professor and Canada Research Chair in physical activity and cancer and director of the Behavioral Medicine Laboratory and Fitness Center at the University of Alberta in Edmonton, has pioneered research on the importance of exercise for anxiety, fear of cancer progression, and quality of life in active surveillance patients.
He is presenting a program from 4:30-6:30 p.m. PDT/7:30-9:30 p.m. EST on May 14 at the Active Surveillance Nationwide Surveillance Support Group in Canada. Register here: https://bit.ly/AS1year
Once diagnosed, self advocacy, research and second (third, fourth opinions) to me seem absolutely necessary. Yes it requires work and resilience on the part of the patient. However, this ultimately gives you the knowledge to make the best decision for yourself and to not let one doctor force you into a corner and make a choice you may possibly regret. Great article!
Thanks, Howard. I have indeed explored all the current options, and in fact had a Urolift in 2019 that improved nothing. But at least it sent me to the hospital for three days of CBI until everything cleared up. Unfortunately the medical insurance situation I have doesn't offer Rezum, Aquablation or Tulsa-Pro. So a ride in the back of dad's car it is. (not a Batmobile) I'll certainly put June 1st on my calendar.