UPDATED--Aftermath of the Collins' case: AnCan webinar on April 29 on the safety of Active Surveillance
Active surveillance (AS) pioneers Peter Carroll, MD, MPH, of University of California San Francisco, and Laurence Klotz, MD, of the University of Toronto, will be sharing the latest data on the safety of AS at a special webinar at 8 pm Eastern Monday, April 29. Register here: https://tinyurl.com/aspcasafe
The AnCan Foundation and ASPI are cosponsoring this event.
The free meeting was organized as a response to the sudden diagnosis of a Gleason 9 of famed researcher Francis Collins, MD, PhD, which made headlines and led some AS patients to question whether they could safely continue on AS. Collins went from being an Active Surveillance patient to planning a radical prostatectomy seemingly overnight.
Register here: https://tinyurl.com/aspcasaf.
By Howard Wolinsky
Minutes after I posted an article on the rapid progression of prostate cancer in one of the world’s most famous soon-to-be-former Active Surveillance (AS) patients, Paul Schellenhammer, MD, a prostate cancer himself and a past president of the American Urological Association, wrote me a note warning that urologists and peer support groups needed to be prepared to support some nervous AS patients and also some newly diagnosed patients considering AS.
He was right. At the AnCan Foundation’s virtual support meeting last week, we asked attendees if the case of Dr. Francis Collins, former director of the National Institutes of Health, made them uneasy.
It did. One-third of the men in attendance said Collins’s case, which he shared in the Washington Post, made them reconsider the safety of AS.
I heard from a friend in Pakistan, who is on AS,managed by his urologist in D.C. “Recently I had my 6 monthly PSA, and it had increased to 16 from 10
eight months back. And then I read your story about Dr. Collins…”
This is a tricky business.
Dr. Collins was first diagnosed five years ago with low-risk prostate cancer at the National Institutes of Health/National Cancer Institute, where he had been the director. He went on AS, and, apparently, everything was well until a month or so ago.
When his PSA shot up to 22 and his Gleason score went 9, Collins headed for the AS exit and began planning a radical prostatectomy.
He wrote a WashPo commentary about the surge in his cancer and his decision to undergo surgery.
Collins, whose cancer is contained to the prostate capsule, wrote: “Why am I going public about this cancer that many men are uncomfortable talking about? Because I want to lift the veil and share lifesaving information, and I want all men to benefit from the medical research to which I’ve devoted my career and that is now guiding my care.”
I don’t think he was thinking much about the impact of his words on AS patients he was leaving behind. If he had been, he might have stressed what a rarity the dramatic rise in PSA and Gleason score had been.
He left many of us with low-risk PCa wondering: If this cancer growth can happen to one of the world’s top doctors treated at one of the top institutions in the world, could this happen to me? Was he vigilant in his care? Did he fall in bteween the cracks?
Seems unlikely.
When I was diagnosed and went on AS 13 years ago, my urologist at UChicago predicted that in ten year’s time, my cancer wouldn’t grow. He was right. In fact, my cancer disappeared in biopsies and MRIs.
What did your doctor tell you? Did he/she mention the possibility of a scenario like Collins’s, with an overnight explosion of cancer?
Collins declined an interview. His personal numbers were scary.
Collins might have helped AS patients, many of whom have emotional distress from living with cancer. He could have emphasized how rare his case.
The experts say we’re safe.
The founders of AS offered support to those of us walking the AS path.
Laurence Klotz, MD, of the University of Toronto, and Peter Carroll, MD, MPH, the developers of AS in the 1990s, reassured the AS population that Collins was an outlier, not the usual story.
(Dr. Laurence Klotz)
Klotz observed: “There is a saying in law, ‘Bad cases make bad law/’ A case like this doesn’t change anything at all. [Collins] developed a new cancer, which was likely diagnosed early because he was on surveillance. Cases like this are well documented but are rare. Perhaps 0.1 to 0.5% of men on surveillance. Biology is dynamic and perfection in anything is not attainable.”
Carroll backed Klotz: “We do not know the details of (Collins’) case (PI-RADS at diagnosis, PSAD [PSA Density], tumor volume, genomic testing, frequency of testing, etc.). Such knowledge refines risk.
(Dr. Peter Carroll)
“I agree completely with Laurie [Klotz]. This is a rare event, I have seen them, but they are exceedingly uncommon. The data on AS is clear and refined and supports its widespread use in well-evaluated patients. It would be unfortunate to say … that a very rare event leads us back to the era when too many men underwent treatment with its attendant costs (psychological, physical, and monetary) with no benefit.”
Join the AnCan webinar at 8 pm Eastern on Monday, April 29. Register here: https://us02web.zoom.us/webinar/register/WN_SHLQQX0XQuqdQAgYW5ib2g#/registration
Remain calm: Prominent doctor's PCa became a Snarling Tiger overnight. But that's not likely to happen to you.
APR 17
ASPI holds a webinar this Saturday on exercise and PCa
Active Surveillance Patients International (ASPI) is holding a webinar on exercise and how it helps patients with prostate cancer. The free program, “How Can Exercise Help Prostate Cancer Patients Like Me?”, will be held from noon to 1:30 pm Eastern Saturday, April 27, 2024. Register Here
The program includes the premiere of the latest in the Active Surveillance (AS) 101 video series, featuring a real couple, Nancy and Larry White, interviewing an exercise expert, Kerry Courneya, PhD, whose research has proven the benefit of exercise in slowing low-grade prostate cancer.
He will be available to answer questions following the video.
Dr. Courneya said his research has shown “exercise is the single most important thing” a cancer patient can do—even more important than diet.” His research has shown patients with prostate cancer (low-risk to high-risk), lymphatic cancer, and other cancers benefit from exercise. His study in JAMA Oncology, showed for the first time that High Impact Intensity Training–bursts of exercise rather than a continuous approach—can help suppress the growth of prostate cancer cells in men on active surveillance.
https://jamanetwork.com/journals/jamaoncology/fullarticle/2783273
There will be a live Q&A. Please email any questions you may have in advance to: contactus@aspatients.org
For more in the AS 101 series, go to: https://aspatients.org/a-s-101/