Men like me aren’t dealing with effects of treatment — we need our own support groups
by Howard Wolinsky
I have cancer but I usually don’t give it a thought. I came to peace with my cancer long ago.
It usually doesn’t keep me up at night. But here I am at four in the morning, wide awake and doodling, and writing about my so-called cancer journey. Maybe I was awakened by snow plows outside my window, chugging and scrapping the pavement after a Chicago snowstorm, or maybe it’s the Arctic winds howling here in Chiberia.
But having even a Gleason 6, until a few years ago, could keep you up at night, fretting about being on the fast track to surgery. You have cancer? Let’s cure it. It was an all-American response to cancer.
Some men with low-risk Gleason 3+3 cancer are still tossing and turning over their decision between aggressive treatment and active surveillance (AS). I didn’t realize in 2010 that my urologist and I were pioneers. Back then, maybe 6% of U.S. men like me with low-risk prostate cancer went on AS; today it is over 50% and climbing.
In my experience, having low-risk cancer is almost like having no cancer at all. There is no pain. No anxiety.
I have been involved with forming an AS education group and have attended several support groups in recent years, not the sort of things I ever envisioned doing. So I have gotten to know many men with low-risk disease.
But most men on AS go it alone. Why not? Having low-risk prostate cancer isn’t like having a life-threatening disease. It is not terribly inconvenient, a couple of urology visits a year for a PSA and a digital exam, and maybe the occasional MRI and fusion biopsy. A significant proportion of these men are still working and don’t feel they have the time or the need to hang out and share thoughts and feelings with other members of what is called “the reluctant brotherhood.”
Brotherhood? It’s true that men diagnosed with early and intermediate stage disease, just like men with more advanced disease, all share the diagnosis of prostate cancer. But sharing the disease is one thing. The challenges and the impact on everyday living are different based on your diagnosis.
Some leaders of support groups see this as one disease and think it natural to mix men with different Gleason scores. More than once, I’ve seen them get angry and insulted at the thought of separating groups with low-risk versus intermediate-risk versus aggressive disease. They bristle at the idea that men with early-stage disease may need their own support groups because they feel uncomfortable being placed with men with more advanced and demanding disease.
Meanwhile, I have observed men who have just been diagnosed with early disease attending a meeting where they hear all about coping with the side effects of surgery or hormone treatment or learning how to live an active life while wearing adult diapers.
These newly diagnosed men who are weighing their options and those with early-stage disease often are shocked by what they hear and don’t come back. I think they need a group of their own.
In the old model, even men with what now is considered low-risk disease were in effect considered to be high risk. Now, 20 years after Laurence Klotz, MD, pioneered AS in Toronto, some cancer groups involved in support, education, and research are finally paying attention to men on AS.
Back when I wrote about support for men on AS here in May 2017, there was not much available. But a lot has happened since then:
- Prostate Cancer International has a live virtual support groupfocused on men following AS. Men call in on the phone or can connect via video.
- Us TOO runs an online support group, Us Too Prostate Cancer Online Support & Discussion Community at Inspire.com. It added active surveillance as a search term to help men find information more easily.
- Malecare recently established a virtual support group for men on active surveillance.
- Active Surveillance Patients International, the first patient-run group with AS in its name, is exploring ways to help these men.
- AnswerCancer Foundation led the way with its live virtual support group for low- and intermediate-risk men now includes AS on its group’s name in hopes of attracting more men.
- Prostate Cancer Research Institute for several years has run well-attended breakout sessions on AS in recent years at its annual meeting in Los Angeles.
So, the support market is responding to the information and support needs of AS patients over some old-school objections.
AS is a stranger in the cancer world because you and your doctor are not seeking a cure, but rather a way to live with cancer. AS poses different challenges for men compared with those undergoing traditional aggressive therapies to obliterate cancer. We are co-existing with cancer, which may never be treated.
We don’t deal with the risks of surgical, radiation, or other treatment. Instead, we monitor with tests that carry small risks of trauma to the gland from biopsies, infection from biopsies that can include sepsis, and the new worries about the gadolinium MRI contrast agent depositing in our brains, bones, kidneys, and other organs.
I have friends who are relieved they are avoiding surgery, but are kept awake by worries about what gadolinium might be doing to them. One of the ironies of living with prostate cancer — and trying to sleep.