By Howard Wolinsky
It was a regular support meeting for men on Active Surveillance for lower-risk prostate cancer. More than 20 of us attended from across the United States and Canada.
Typically, we get updates from attendees on their latest prostate-specific antigen (PSA) blood tests, magnetic resonance images (MRIs), and biopsies. We discuss the pros and cons of transrectal vs. transperineal biopsies and the value of germline and somatic testing. We talk about how we’re coping psychologically with living with our cancers.
But this night was different from all other nights. There was an elephant in the room. We had a subject before us that some preferred we not address, at least at that moment, even though it clearly was on everyone’s mind.
The elephant was the accusations aired in the Washington Post days earlier about Dr. Jonathan Epstein, the world’s leading uropathologist, who helped determine cancer treatment for most of us.
The Post reported that Epstein was on administrative leave—first reported in this blog last May—for allegedly misdiagnosing a cancer that led to a patient’s bladder being removed and also for allegedly creating a “culture” of bullying and intimidation by leaning on his professional colleagues to provide supportive second opinions to back-up his wife, Dr. Hillary Epstein, who is on staff at another group.
Dr. Jonathan Epstein denied all wrongdoing and said the Joint Commission, which investigated the charges, had not even interviewed him. He said patient confidentiality limited what he could comment on.
As a moderator, I preferred that we openly discuss the Epstein affair and clear the air.
If you’re not from the prostate cancer community, it may be difficult to grasp the godlike position Dr. Epstein holds in our small world. Patients like me hang on his every word. His thumbs up or thumbs down on the type of cancer we have can set our fate for years to come. His was considered the final and most authoritative word.
Dr. Epstein probably had performed second opinions on more than half of us. He did my second opinion in 2010.
Having Dr. Epstein under a dark cloud, for some, leads us to question the accuracy of our pathology reports, especially if he or his colleagues were rendering opinions on Dr. Hillary Epstein’s pathology reports.
One patient said he trusted Dr. Epstein’s judgment and thought that most patients’ biopsies were read accurately. I agree.
However, another patient felt that position was going too easy on Epstein, especially for patients like him. He was a patient at the non-Hopkins practice, Chesapeake Urology, where Dr. Hillary Epstein is on staff. He said he was relieved when he looked up his record and found Dr. Hillary Epstein had not signed off on his report.
The first patient said he suspected that in the current politically correct environment, Dr. Jonathan Epstein’s career may be over. I don’t think so, though I think he may be going down a new and unexpected path.
It would be a shame to lose all that knowledge. Dr. Epstein has helped define the field of uropathology and prostate cancer. We owe him a debt of gratitude. He has trained a generation of other qualified practitioners.
Some feel it’s wrong to throw him under the bus—or even to say a critical word. One patient told me to “bang other drums.” Some don’t trust the Post.
At age 66, Epstein could be practicing for another decade or more. Hopkins may cancel him, just to be done with the Epstein affair, though he has been a rainmaker. His program has brought in about $45 million for Hopkins over the past decade.
Dr. Epstein needs to tell patients the full story at some point, though his lawyers no doubt have called for radio silence. He did answer some questions raised by the Post and, again, denied any wrongdoing.
Another speaker endorsed Epstein’s medical knowledge but raised questions about his non-medical judgment regarding his wife’s work.
Indeed, Dr. Epstein and Hopkins should have erected barriers to Dr. Epstein being involved in any way with reviewing his wife’s cases to avoid any suggestion of conflict of interest. Dr. Arthur Caplan, a leading medical ethicist, said the ethics of this area are not clear on this point.
Still, common sense dictates distance.
***
Dr. Epstein’s boss, Dr. Redonda Miller, Hopkins’ Chief Medical Officer and hospital president, responded to my commentary, ”Time to Fess Up, Hopkins,” where I suggest Hopkins’ leadership apologize to patients, provide a full accounting, and offer to re-read pathology in case patients are concerned. This is a public relations nightmare for Hopkins.
I would have liked to see Hopkins commit to more transparency and support for patients.
If you have concerns about a pathology report, I urge you to contact Dr. Miller at: 410.955.0620, or rgmiller@jhmi.edu
**
Our faith in Epstein may be shaken—at least until we get more information.
But look. Our groups have known about this problem since May when patients were being referred to Epstein’s associates because Hopkins placed Dr. Epstein on administrative leave.
It took almost six months for us to get further word on the Epstein Affair. And it took an investigative team at the Washington Post to make this information public.
***
In late April, I hosted a webinar featuring Dr. Epstein. He has been generous with his time, and the patients love to ask him questions. He has a great bedside manner, especially for a pathologist, who often consider themselves “the doctor’s doctor” rather than the patient’s doctor.
I mentioned to him that many support groups simply referred patients to him for second opinions. His was a trusted brand.
But I was wondering who else we could trust. It’s always a good idea to have a Plan B or C for a third opinion.
I asked him who he would recommend as a backup in case he wasn’t available. I had no idea how prescient that comment would be a month later,
He laughed and declined to suggest anyone in a live webinar. Too political. Too personal. It likely would have put him in hot paraffin with his colleagues.
We all laughed. I suggested that Epstein share his recommendations off-camera. It didn’t happen.
I wrote about this in June in a column entitled “A second opinion about second opinions: The mysterious disappearance of Dr. Jonathan Epstein.”
Lately, I have been referring patients to Dr. Ming Zhou, pathologist-in-chief at Tufts Medical Center in Boston, who was an Epstein trainee 20 years ago. Epstein introduced me to Dr. Zhou when he wasn’t available to do a program a couple years ago. I have been referring patients to him for second and third opinions, and received positive feedback.
(BTW, Dr. Zhou will be writing a column starting in November in TheActiveSurveillor.com.)
***
Meanwhile, where else do we go for second opinions?
Dr. Epstein said he signed off on 12,000 cases a year. He took final responsibility, but his strong team helped him weed out the 50% of cases that weren’t complicated and helped him hone in on the most critical slides. The Epstein lab was a well-oiled machine, fast and efficient, and still is.
A top urologist—not affiliated with Hopkins— told me: “The people Epstein left behind are great and very efficient.”
But some patients may feel uneasy about going to Hopkins. I wouldn’t, but I can understand that response.
So, FYI, I asked around and came up with a list of uropathologists that other uropathologists and urologists recommend for second opinions:
Dr.Samson Fine, MSKCC
Dr. Jiaoti Huang, Duke
Dr. Boye Osunkoya, Emory
Dr. Gladell Paner, U Chicago
Dr. Rajal Shah, UTSW Dallas
Dr. Jeff Simko, UCSF
Dr. Ximing Yang, Northwestern
I’m hoping Dr. Epstein gets the accusations against him cleared up and will be back in practice soon. Meanwhile, there are other qualified uropathologists to whom you can turn.
Tick-tock, vote …
By Howard Wolinsky
Can you weigh in on my survey on what otherwise healthy men should do about Active Surveillance once they reach their mid-70s?
I have had 120+ responses, but I’m greedy and would like more by the time I close voting next week.
There’s still time to answer a couple of questions on AS and related topics: https://forms.gle/oFvfH3rPdgJmEbiQ7
Can we can get a dialogue going with the urologists and develop guidelines to help us decide what to do about AS in older men?
See more:
The old man and AS
OCT 21
You’ve got questions? They’ve got answers.
By Howard Wolinsky
Starting in November, a panel of experts will answer your questions about Active Surveillance and lower-risk prostate cancer right here at TheActiveSurveillor.com.
These top docs will respond to your questions about pathology, urology, radiology, and sex and surveillance.
Please send questions via email to mailto:pros8canswers@gmail.com
Keep the questions short and sweet. They should be of general interest. Sign with your real name, or just initials, tell me where you live, how long you‘ve been on AS., how it’s going for for you.
Join ASPI in celebrating AS support pioneer Thrainn Thorvaldsson
By Howard Wolinsky
Icelandic support group trailblazer Thrainn Thorvaldson, who started the world’s first support group for Active Surveillance, is being honored with ASPI’s for Patient Advocacy Award on Saturday, October 28, 12 pm-1:30 p.m. ET.
Thrainn changed my life when he heard about how I ranted about the bad treatment of AS patients at a major medical meeting, and we decided to work on reforming things. We plus Mark Lichty and Gene Slattery started ASPI in 2017.
Following the Active Surveillance Patients International ceremony, they will open the floor for discussion from the audience.
Register here: https://zoom.us/meeting/register/tJMrcuuqrTgiH9WrrznAmLJvh-xOcZT6Fg2q
ASPI’s prior award programs have included The Gerald Chodak Award, named for ASPI’s first medical advisor and AS pioneer, the late Dr. Gerald Chodak, honoring Dr. Laurence Klotz, the father of AS in 2022 and Dr. Peter Albertson, who led some of the earliest research on AS, in 2023. The ASPI AS Advocacy Award went to the MUSIC (Michigan Urological Surgery Improvement Collaborative this year.
Charles, Any ideas? Beyond word of mouth from doctors and other patients? Howard
great summation of the situation. We too have to reconsider who and when we rec. someone for a second opinion. Not only egg on face with John Hopkins but our favorite radiation technique the MRI guided radiation program is bankrupt (Viewray) Looks like we need a better way to investigate our referrals before we use them. Chuck Metzger MD. MBA