United We Fall, Divided We Stand:
The cultural divide between high- and low-risk prostate cancer patients?
By Howard Wolinsky
Active surveillance for men with low-risk cancers has been the Rodney Dangerfield of urology. We men on AS — close monitoring of our cancers — get little to no respect from men being treated for prostate cancer who can experience a host of serious side effects.
AS has experienced gains over the past five years. The American Urological Association in 2017 stated in new guidelines that clinicians should recommend active surveillance as “the best available care option for very low-risk localized prostate cancer patients. (Strong Recommendation; Evidence Level: Grade A).”
This is a far cry from when I was diagnosed in December 2010, and my first urologist told me he could cure my cancer — a tiny Gleason 6 in a single core — “next Tuesday” when he had an opening in his OR. Back then, 6–10% of men like me opted for AS. Or, to put it another way, 90–94% sought “definitive” treatments, mostly radical prostatectomies.
A new generation of urologists, following the guidelines, is increasingly resisting the urge to perform surgery and rather recommends that men with low-risk Gleason scores of 3+3 and some men with favorable intermediate-risk Gleason scores of 3+4 go on AS.
There has been a surge in the past five years in the proportion of American men opting for AS. Some experts estimate that as many as 50–60% of eligible men now choose AS. (Again, 40–50% still opt for prostatectomies or radiation, a contrast from 90% who opt for AS in Sweden and the Netherlands.)
In May 2017, I described in my MedPageToday blog the lack of support services for men on AS. The philosophy then was to combine men on the full range of diagnoses, from very low-risk to advanced cancers, and treatments.
However, the voices of men worried about their next biopsy or MRI could be drowned out by those of men with impotence or incontinence as collateral damage from radical surgery, to those with hot flashes from hormone therapy, or “brain fog” from chemotherapy.
Men with low-risk cancer attend these meetings and often don’t return.
Some think these side effects are their future. But they’re not. About 50% of men on AS eventually end up being treated, though frequently they switch to treatments because of anxiety rather than the disease progressing.
Some men experience anxious surveillance; they may have low-risk disease but they can’t co-exist any longer with a cancer that can be cut out or zapped with radiation or lasers.
I encountered outright hostility when I suggested in my blog four years ago that separate support groups be created for men on AS.
One group, known as the “warriors,” argued all men with prostate cancer are in this together in what they like to call the “reluctant brotherhood.” But these. men with aggressive treatments and diseases may not realize men with low-risk disease are being scared off and want to stay away from the brotherhood altogether.
It still isn’t widely acknowledged that there is a cultural divide between these groups of men with very different diseases and side effects, different views of their diseases, and different emotional needs.
Some of the support and advocacy organizations have been trying to meet this need for men on AS. Groups, including AnCan/Us Too, Active Surveillance Patients International, Cancer ABCs, Malecare, Inspire (a virtual group from Us TOO International), Prostate Cancer Research Institute, and ZERO — The End of Prostate Cancer have been making some strides with virtual, asynchronous and (until COVID-19) in-person support groups.
About a year and a half ago, I helped start a monthly virtual support group for AnCan and UsToo believed to be the first of its kind in the U.S. The group has grown to a weekly meeting. We hold webinars featuring leading experts on AS that draw hundreds of men virtually and hundreds more on video replay,
At last, AS seemed to be finding its place in the support sun. Then, I encountered negative attitudes on the part of people who ought to know better — support group leaders.
One impatient leader in effect asked me when men on AS would just grow up, “bite the bullet,” put on their big boy pants and stop whining about biopsies that could save their lives. But the man who said this had undergone hormonal treatment and didn’t quite understand that men on AS are not “whiners” or “crybabies” but rather are coping with their own problems.
I told him there is a cultural gap between men who were being treated and low-risk men like me. Men with more higher-grade cancers who are being treated may be fighting for their lives while those on AS are worrying about more fundamental issues such as “When should I have a confirmatory biopsy” or “Is gadolinium contrast dangerous?” that are just as real to them.
I was frustrated about another incident recently that demonstrates how little respect AS may be getting from some men with higher Gleason scores and collateral damage from treatment.
As an Us Too group leader, I got a note from HQ seeking group leaders willing to talk in pop-up support groups about such topics as surgery, radiation, hormone therapy, and helping the newly diagnosed and caregivers. Us Too made the request on behalf of ZERO, which wanted to include sessions at its annual Summit this year.
I read the list over. ZERO, a savvy organization I have worked with, omitted active surveillance as a topic. I pointed this out and ZERO graciously added a support “lounge” devoted to AS. An oversight, sure, but no slight intended. Three of us AS support group moderators volunteered to participate.
I was stunned at what happened at the session. We had about 25 attendees. Apparently, most had been treated or were considering treatment for more advanced cancers. We did what we could to help and refer the men to support groups more suited to them.
We suspected there were some men on AS lurking but not talking.
One very vocal group leader represented a prostate cancer support group for all-comers. He said he had undergone a radical prostatectomy decades ago. He said he knew about AS but admitted he wasn’t much of a fan.
I gather he thought that aggressive therapy was inevitable so why not get it over with. He insisted his group did what it could to support men on AS.
But he said he found these men to be scared rabbits (my term). I can understand why. They were attending a support group geared toward men coping with severe side effects and those fighting for their lives run by a leader who didn’t really believe in AS as an option.
Good intentions gone awry.
I suspect there is a lot of this going on in the support world. I wonder how many men with low-risk or favorable intermediate-risk prostate cancer attend these groups and are steered into undergoing prostatectomies or radiation therapy when none is needed — at least not immediately.
I contrast these AS skeptics with my friend Bob Allan, a support group leader from Prostate Cancer Support Canada/Burlington in suburban Toronto. Allan was treated with radiation years ago and has fared well. But he supports AS as an option and regularly attends our AnCan/UsToo virtual meetings to learn about the latest on AS to share with his members.
It’s time to end this undeclared culture war. I think many support group leaders need to be educated about AS especially since the proportion of men with prostate cancer opting for AS is on the rise. Or these support group leaders need to refer AS patients to support groups with expertise in active surveillance.
Men on AS will be better served by taking these approaches than suffering in silence in their groups.
Howard Wolinsky is a Chicago-based medical writer and author. His new book is “Contain and Eliminate: The American Medical Association's Conspiracy to Destroy Chiropractic.” For more information, go to Containandeliminate.com. He also contributes a blog, “A Patient’s Journey,” to MedPageToday.com. He has been on active surveillance for 10 years.