According to Dr. Patrick Walsh from Johns Hopkins, the prostate is “…only as big as a walnut, the prostate is a miniature Grand Central Station, a busy hub at the crossroads of a man’s urinary and reproductive tracts.” Walsh goes on to write, “any form of treatment for prostate cancer can produce side effects including incontinence, impotence, and rectal bleeding.” Have you ever witnessed a man another male receive a nasty blow to the testicles in a soccer game or elsewhere? He squirms. Talking about prostate cancer, and/or the side effects of treatment, can elicit the same kind of reactions.
The American Cancer Society states that prostate cancer is the second leading cause of cancer death in men (behind lung cancer). One in six men are diagnosed with prostate cancer in their lifetime. Many more men die with it (but not from it…other things tend to get us first). It is a very treatable disease, and currently, one in thirty-six men actually die from it. Nonetheless, prostate cancer not only forces men to face potentially uncomfortable features of their body’s functioning, and aspects of their manhood, it also reminds men of their mortality; decisions are sometimes made along the lines of “be treated, or die.” So how do men talk about this kind of thing? They must benefit from something like a support group right? Absolutely, but most of it isn’t easy.
As with any group, a support group that is composed of all men…is different. Dr. David Spiegel and Dr. Catherine Classen indicated that “barriers to direct expression of distress among men are even higher than those found among women.” As men, we sometimes do a good job of living up to the stereotypes. We may not like to be emotionally vulnerable. Being vulnerable in this way fosters anxiety that can be more uncomfortable than the squirm I spoke of already. But so much good can also come out of this process too. Spiegal and Classen stated that “there is growing evidence that men need, will accept, and can benefit from group support.” At the Cancer Support Community, I lead a support group that meets the last Wednesday night of each month.
All groups tend to move through the stages of “forming, storming, and norming.” An “open” group like ours (one that always welcomes new members) is in constant flux. Often we are “forming.” New members come in and we get to know each other. Sometimes we are storming. There can be discomfort as we enter new territory or there can be disagreements over treatment decisions or over the focus of the group. And our group is gradually “norming,” establishing what we do with our time together, and how do it.
One usual function of our group is information sharing. Survivors in the group tend to share a great deal of information, which can feel empowering at both ends. We’ve also enlisted the expertise of several generous doctors and others. Spencer Green, manager of Bozeman’s Cancer Center and co-founder of Progress for Prostate sometimes joins us. Dr. Bruce Robertson joined us last month and Dr. Gregory Pritham will join us on September 28. And on November 30, Dr. David Koeplin will meet with us to discuss technical aspects of radiation therapy and related quality of life issues.
Often, when exchanging information with each other, the focus is on areas such as choosing a treatment team, finances, or treatment options such as surgery, radiation, radioactive seed implants, hormone therapy, and naturopathic/alternative approaches. We have also tended to focus on ways to track treatment efficacy, such as PSA scores, different PSA sensitivities, and Gleason counts. And sometimes we broach the subject of death, especially friends or family that have been lost to the disease. And we talk about matters of intimacy, sometimes with a good laugh over the wonders of modern pharmaceuticals, and sometimes with candid fears about the possibility of treatment affecting one’s masculinity or ability to be sexually intimate.
Prostate cancer can force men to look at some of what scares them most. When faced with mortality, it’s hard not to also take a look at bigger existential questions. Bigger questions or smaller questions it can be comforting to share these concerns with each other, and to experience a sense of commonality in what is guaranteed to present some adversity.