Helping Men Come to Terms With Their Breast Cancer Diagnosis

Not everyone understands that breast cancer is a genderless disease. This was even more so when I was diagnosed with stage 3 inflammatory breast cancer 10 years ago. At the time, I found support for men was very hard to find. Since less than one percent of breast cancers occur in men, I soon discovered that many guys were loathe to admit they even had this type of cancer.¹

Stigmas and reluctance to seek medical care

Unfortunately, they also perceived there to be a stigma attached to a man with breast cancer. After all, the pink hoopla surrounding the disease is a bit over the top. So many men report blank looks when waiting for breast scans in a room full of women. In fact, they are often asked, "Where is the patient?" when they are at the counter.

The truth is also that men are more often reluctant to seek medical attention than women. Sometimes, to the extent that they often won't discuss their medical conditions even with family and friends. Unfortunately, research has shown that a later diagnosis leads to a poorer prognosis.²

Subscribe here

My advocacy path after treatment

Male Breast Cancer Coalition (MBCC)

I decided, pretty soon, that once treatment was finished, I'd make it my job to help other men undergoing diagnosis and treatment. Before long, I joined the Male Breast Cancer Coalition (MBCC), founded by Cheri Ambrose and Peggy Miller after Peggy's son, Bret, was diagnosed with breast cancer at age 24. Connecting with other men soon morphed into a job editing their stories for publication.

Male Breast Cancer Global Alliance (MBCGA)

I have continued with this job since joining a new group initiated by former MBCC founder Cheri Ambrose. I am currently President, Board of Directors of the Male Breast Cancer Global Alliance (MBCGA), established in 2020.

The MBCGA "brings men with breast cancer together with researchers, clinicians, and oncologists around the world for the purpose of advancing research, clinical trials, and treatments for men diagnosed with breast cancer."

Advocating for men diagnosed with breast cancer means working to help them receive equal access to support and treatment, letting them know about resources for their particular subtype of the disease, advocating for their inclusion in research and clinical trials, and supporting their care partners and families. MBCGA has volunteer "ambassadors" in several countries who help fulfill the group's ambition to become the major international patient advocate for men.

Connecting with social media and community forums

Social media is important for connectivity, but where possible, there is an interchange of members to international conferences and an annual MBCGA conference with expert guest speakers.

Social media is the best way to keep in contact with and offer assistance to men with breast cancer. The various mediums work well for those with the time and inclination to connect with men who cannot always converse on matters that concern their diagnosis and treatment. With social media, you can be both proactive and reactive. The MBCGA has a private Facebook group and other community resources listed on its website.

Finding your tribe for practical help and support may take time. Community forums are also good go-to places. By only sharing information you feel comfortable with, you can control the flow of information. Sometimes, it can be too much, so be prepared to move forward at your own pace.

And remember, social media should never replace professional medical advice, so keep your medical team in the loop for advice and to confirm any decisions you make.