Wanted: Safe Places Where Women Whose Men Have Prostate Cancer Can Talk About What Really Matters

BY RALPH BLUM

Fact of life: The presence of even a single man in any support group changes the nature of the conversation about prostate cancer.

As one woman told me, “When the men aren’t there, we talk much more freely about how the disease is affecting both of us psychologically—our worries, our fears, our need to put on a brave face. And how we feel about everything that is happening— or not happening—in the bedroom.”

I assumed that support groups for women whose partners have prostate cancer were plentiful—meetings where women can talk openly about the things men won’t talk about. As it turns out, in the entire United States, there is not one prostate cancer support group for women only.

At first, I couldn’t believe it, so I consulted Dr. Google, plugging in “Prostate Cancer” and “Women” and “Support Groups.” Nothing. I scanned the American Cancer Society, CancerCare, National Cancer Institute, Women Against Prostate Cancer (WAPC). More nothing. I checked out UsToo International, with its over 300 support groups nationwide, and came up with a handful of groups tagged “For Women Only.” To my dismay, I learned that those meetings served as preludes to regular family support groups, and that they only lasted half an hour!

A Light in the Darkness

Then my remarkable friend, Celestia Higano, MD, a prostate oncologist at the Seattle Cancer Care Alliance, put me in touch with Sylvie Aubin, Ph.D., who had created just what I was looking for: a support group that focused on the psychosocial issues that impact both men and their partners following a diagnosis of prostate cancer. She called it a “Spousal Support Group.”

According to Dr. Aubin, only in a Spousal Support Group, with no men present, are women able to talk unashamedly about their sadness and their fears. When a man is diagnosed with prostate cancer, woman must face the question: How will this change our lives? A big concern is financial survival, true enough. But they are actually more fearful of losing his emotional support—the agonizing possibility of life without him, without his companionship. Women need to hear from other women about how they how they are coping—what they are going, through and how they have survived.

“At home,” Dr. Aubin told me, “women always feel the need to put on a brave face, to contain their emotions, to become—like their men—solution oriented. That’s why the Spousal Support Groups are so desperately important. Men’s support groups are very focused on treatment options. My women’s group is entirely about the experience and the challenges. Men are uncomfortable looking at or dealing with intimacy issues. They’re socialized to ‘fix the broken chair.’ It’s almost impossible to get them to open up about how they feel. They seem to think that if they talk about their emotions, people will think, ‘Oh, so he probably can’t perform.’”

Dr. Aubin also emphasized women’s essential role as providers of accurate information, especially when it relates to a man’s emotional state. “We ask him, ‘Have you been feeling sad or depressed?’ And he goes, ‘No, not at all.’ Then we ask the spouse, and she says, ‘My God! He’s depressed all the time!’ It’s the rare man who feels comfortable bringing up his emotional problems in a group. But then a lot of women are also reluctant to talk openly about their intimate lives, even when it’s just among other women. Which probably explains why groups like mine are practically non-existent. And why, I regret to say, my group no longer meets.”

A Safe Place of Your Own

More than any other cancer, prostate cancer is a family disease. This country needs Spousal Support Groups, meetings exclusively for women and as plentiful, as available as 12 Step meetings. All I can do is urge you, the women who play such a huge role supporting us after we are diagnosed, to create a nationwide array of Spousal Support Groups.

And while you’re at it, you might want to start a Spousal Support Newsletter. And a Spousal Support website. Make the Internet your bush telegraph to put out the word.

Dr.Aubin nailed it when she said, “Believe me, a multitude of men owe their lives to their partners. I’d say to women, Come together and share your experiences. You are going to be his best helper. No urologist will ever love him like you do!”