Must read: Lies, dirty lies and prostate cancer

Jim paid a big price for radical prostatectomy--save the date April 6

(Editor’s note: I met Jim Schraidt back in 2018 by chance. My email address somehow landed on a mailing list for a support group for prostate cancer he ran in Chicago. I contacted him about his group and was shocked to hear his cautionary tale.

He is an invaluable advocate of what he had been denied—active surveillance for favorable intermediate-risk Gleason 3+4 prostate cancer. He stands up for patients like us, serving on the board of ZERO: The End of Prostate Cancer and as a moderator to the AnCan Virtual Support group for AS.

Jim, a retired Chicago lawyer, has channeled his anger in constructive ways.

Twelve years ago, he had been to a top surgeon at a top medical center in Chicago and was promised the world with radical prostatectomy. He felt in the end that he had made the wrong choice.

His is a tale of decisional regret.

His story stunned me: a prostatectomy led to full erectile dysfunction which led to severe depression and suicidal thinking.

His surgeon is a world-famous urologist. As it happens, I had spoken to the surgeon about my diagnosis with very low-risk prostate cancer. Jim was diagnosed at about the same time as me.

Dr. X. told me I was “crazy” to be on active surveillance—even though I only had a single core with a tiny amount of Gleason 3+3. Years later, he told me he had made a mistake in my case. No harm. I hadn’t accepted his advice.

Jim followed Dr. X.’s advice, which led to horrible consequences.

Jim became a champion for active surveillance with support groups and organizational work on behalf of patients with prostate cancer and their families. He was an early board member in Active Surveillance Patients International, which I co-founded. He left ASPI to chair Us TOO and now is on the board of the merged ZERO/Us TOO, while remaining a moderator for AnCan. He will be moderating a session on “decisional regret” at 8 p.m. Eastern on April 8. Join us—see below. And answer the survey.)

Here’s Jim’s story with a link to my original column in MedPageToday (free subscription:)

By Howard Wolinsky

Jim Schraidt has been to hell and back.

A third-generation prostate cancer patient, the Chicago attorney was diagnosed with prostate cancer at a major Chicago teaching hospital in March 2010 at age 58. The biopsy revealed extremely low volume (a small part of one biopsy core) mostly Gleason 3, with a tiny amount of Gleason 4, yielding a Gleason score of 7 (3+4).

Schraidt was opposed to immediate treatment and suggested to his urologist that they talk about it again in six months and see if the PSA changes. However, his urologist and separately his surgeon insisted that immediate treatment was absolutely necessary due to his age and the presence of Gleason 4. He was told that immediate radical treatment was necessary to avoid the progression of the disease and possibly save his life.

Concerned about the reported sexual consequences of treatment, he read extensively and asked his urologist and surgeon very specific questions including questions about orgasm and erectile dysfunction. In response, he was told that orgasm could be expected to be normal, even in the absence of erections and that something could almost always be done about erections. His surgeon asserted that because of his age and overall health, he could expect an excellent recovery and that he would find treatment and recovery to be a mere "speed bump" (presumably on the road of life.)

The name of the hospital and the surgeon don't matter. Schraidt received standard care in 2010.

He trusted his surgeon. He took it as gospel that a prostatectomy was what was needed. He didn't seek a second opinion on either the biopsy pathology or the treatment recommendation.

Contrary to the reassurances he received from his urologist and surgeon, Schraidt had a far from easy recovery for which he was totally unprepared. Looking back, he said: " I have struggled with treatment consequences, including, without limitation, apparently permanent ED, anorgasmia, leakage of urine during sexual activity, penile shrinkage, and low testosterone. I was not informed, was misinformed, or was outright lied to concerning these consequences."

For the rest of the story, go to https://www.medpagetoday.com/special-reports/apatientsjourney/73386 (Registration and free subscription.)

Schraidt will moderate the upcoming AnCan Virtual Active Surveillance Support Group’s “First Wednesday” program on “decisional regret” featuring researcher Christopher Wallis, MD, PhD, of the University of Toronto.” Mark it on your calendar: 8-9:30 p.m. Eastern on April 6. It’s a drop-in program in the Barniskis Room. For instructions to join:  https://www.gotomeet.me/AnswerCancer More info: https://howardwolinsky.substack.com/publish/post/47453319

A column on Wallis’ study:

Are you regretful? Please answer The Active Surveillor Quick Survey on regret and active surveillance: https://www.surveymonkey.com/r/7SFBHKF

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Come on. Don’t miss this program: Top docs—including Dr. Laurence Klotz, who named AS; Dr. Peter Carroll and Dr. Peter Albertsen, who helped develop the approach, and Dr. E. David Crawford, who believes it’s time to move beyond AS— will be exploring the future of Active Surveillance at 11 a.m. Eastern April 22. Register here ASAP: https://zoom.us/meeting/register/tJEtfuuqrzwtHNPuqzkigx65YBk8vV-teUdy