Where are the Men in Cancer Support?

During our webinar for World Cancer Day earlier this year, Angus Pratt pointed out a disparity in patient self-advocacy that he came across in his cancer journey.

“If you were to look at the names of the people participating in this webinar, and make some assumptions about gender, you will realize that there is a disproportionate number of women involved in patient advocacy.” He said. “Men have been reluctant to get involved in this movement and speak to the challenges of the healthcare system.”

The lack of men in cancer care and advocacy is something that we have come across as well. Often women are very front and center in the movement, telling their own stories and participating in support groups. While finding cancer survivor stories about men isn’t a difficult endeavor, women are not only more likely to tell their own story, but in many cases, men’s stories are told by women. This is even before we take into account the act of caretaking, which is dominated, almost exclusively, by women.

You may be forgiven for thinking that men don’t get cancer, based on their lack of participation in their care. Several studies have found that men are largely absent in support groups. In our own recent Leger survey, nearly 70 per cent of respondents were women, and breast cancer was the most prominent condition reported. Looking over the results of our survey, we found women were more able to talk about their experience than men.

So why is this?

A study from February 2008 from the Journal of Cancer Education suggested that men did not often disclose personal information that might make them appear weak or vulnerable. This study referred to other studies which showed that men often use talk to establish or defend their personal status, and to exhibit knowledge, skill, and ability.

The issue is that the trauma of a cancer diagnosis knows no gender. And despite the tendency of men not to to display negative emotions like sadness or anxiety, vocalizing these emotions has been shown to be key to psychological wellbeing.

So, what’s the solution to getting men more involved in cancer support groups? Let’s look to prostate cancer.

Prostate cancer is the most common cancer in men, and research on their support group efficacy was done in 2016. This study, published in the Geriatric Nursing Journal, noted that men rarely attend prostate cancer support groups due to the embarrassment surrounding the side effects of treatment. Incontinence and erectile dysfunction, coupled with the social demands of being a man, results in them not seeking help in support groups.

However, the study also offered solutions. Incorporating support groups into cancer care and letting men know that support exists helps to fill the holes physicians can’t. Part of a man’s cancer journey should be assessing if he has proper social supports to see him through.

The study also recommended that support groups should be structured differently. First, they should be tailored to address the needs of men with specific cancers. And secondly, they should emphasize one-to-one support with other cancer survivors.

As for cancer advocacy, we believe that if more men are talking to each other in their support groups and one-on-one, they will feel more comfortable going public with their stories. And soon, they will feel more at ease with giving their input on how to improve cancer care not just for themselves, but to all patients regardless of gender.

As Men’s Health Month wraps up, it’s important to realize that the culture of manliness, one that is strong, dependable, competent, and knowledgeable, is directly at odds with the realities of a cancer diagnosis. The typical ideal of power is taken away as the disease and treatment takes a toll on the body and mind. Asking to change what is expected of men is a tall order, but reframing how support is carried out, and how it is managed, is key to getting men to become more active in their care. And when men are more active in their care, it is easier for them to become survivors.