Less Is More: Facebook Group Diverts Prostate Cancer Patients from Potentially Harmful Treatments
Many doctors use surgery and radiation to treat prostate cancers. A Facebook group educates patients about an alternative — active monitoring.
Prostate cancer is a leading cause of death in adult men in the United States — second only to lung cancer, according to Medscape. On average, men are diagnosed at about 66 years old. While the disease can be life-threatening, most men survive. The most common treatment for prostate cancer at any stage is radiation. Doctors may instead recommend a prostatectomy — removal of the prostate — if previous radiation treatments were unsuccessful and surgery does not pose too high a risk to the patient. Prostatectomies can affect many aspects of the patient’s life, including sexual relationships and self-confidence. Research suggests that patients who employ active monitoring have greater quality of life than those treated with surgery or radiation.
Roughly 60 Facebook groups are dedicated to cultivating communities of support, awareness, and information about the disease. Among these, Prostate Cancer Active Surveillance Support plays an important role in patient lives by countering the rush to perform invasive, life-altering surgery. The group was created in 2016 by John King who, that same year, was diagnosed with prostate cancer. King’s background as a holistic practitioner led him to extensively search for alternative treatments to traditional radiation and surgery. King’s Facebook group, driven by support and treatment information, now has 333 members hailing from various parts of the world. (See Fig. 1)
In contrast to most of its peers, the Prostate Cancer Active Surveillance Support group focuses on a subgroup of those living with the disease, those diagnosed with low-grade prostate cancer, otherwise defined as having a Gleason score of 6. The Gleason score, which ranges from 6 to 10, is the grading system used to determine the aggressiveness of prostate cancer based on the arrangement of cells. Men with Gleason 6 can employ what is called “active surveillance,” monitoring of the cancer until a doctor deems medical intervention necessary. As a member of several other prostate cancer Facebook groups, King created the group so men wouldn’t be frequently exposed to stories of loss and hardship by those with more aggressive cancer.
One of the group’s primary goals is increasing men’s awareness of their options other than the frequently encouraged prostate removal, King shared in a phone interview. Because of regional disparities in health care and patient medical literacy, many men end up getting aggressive treatment without being aware of the active surveillance option. A 2012 study concluded that “despite strong evidence from randomized trials for the safety of surveillance for selected men, approximately 10% of patients in the United States are managed with surveillance compared with three times that rate in European countries.”
King makes an effort to educate group members about alternative options to surgery:
There’s a real disconnect in the level of care in certain parts of the country. Here in the Northeast [region of the US], if you get diagnosed with Gleason 6, chances are they’re going to tell you to do active surveillance. South of the Mason-Dixon Line, if you get Gleason 6, chances are they’re telling you to get your prostate removed. So, what troubles me is that a lot of these guys are not even given the option to do active surveillance. People in my situation can discuss and share experiences and what’s going on with them so that they can make educated decisions about their care.
King and other group members did not feel comfortable sharing examples of group posts. But group members shared written reflections on their experience within the Facebook community and the impact they’ve felt in their own lives. One member, who joined to gain knowledge about treatment possibilities, reported that he found King’s group to be a haven for support and useful medical information:
I was frustrated, and the experience of being in online support groups calmed me and alleviated some anxiety. . . . While doctors and specialists have been helpful, my communication with new-found online support and communities provides me with needed perspective and sometimes the latest information from completed clinical trials which can lead to new tests and markers. Doctors do not have the time to keep up with the thousands of trials which take place throughout the world. In short, I could not have come through the past 3 years without online support. I am now on the board of a non-profit Active Surveillance organization and my goal is to reach and help as many men as possible.
The lag between clinical research and medical practice may be a factor leading many to do their own research and turn to Facebook for necessary information. Another member commented on his own experience with medical shortcomings and treatment disparities:
Prior to this group, I had a urologist who was positive I had prostate cancer although none of my biopsies showed anything. He was gung-ho on removing my prostate anyway. I said NO. I had already researched the side effects of such surgery and said I was way too young to put up with them the rest of my life. He sent me for a 2nd opinion at a well-known cancer hospital. That doctor did biopsies and found 2 cores with cancer. The Gleason score indicated no need for surgery. Active surveillance was the treatment plan and still is. I then found this group and have received much support that reinforces what my urological oncologist has said. I am grateful to this group for this support.
Beyond spreading knowledge and countering unnecessary treatment, the group provides companionship in a private and distressing time. A third member shares:
When I was first diagnosed with prostate cancer, my life stopped — as it probably does for everyone receiving a cancer diagnosis. Since I have no family to talk to, I immediately turned to Facebook to locate some type of support. I found a support group that dealt with prostate cancer. Simultaneously, I was also doing my research on Gleason 6 Prostate Cancer (my diagnosis). After reading many stories of men with advanced prostate cancer, I became less anxious realizing that my cancer was “not that bad.” Don’t get me wrong, cancer is cancer and it’s all bad, but I was lucky I caught it early and that it was Gleason 6. . . . When dealing with an unknown, one’s imagination can be the worst enemy, greatly affecting one’s quality of life. Joining an online community gave me hope, lots of helpful information and some new friends. Cancer is tough enough to deal with, no one should deal with it alone.
King’s Prostate Cancer Active Surveillance Support group serves to bridge the gap between health care and public knowledge. As supported by numerous testimonials, the community has touched the lives of many men living with prostate cancer as well as provided them the awareness of an alternative to surgery that they may not have discovered otherwise.
