By Rod Ritchie
A guy is generally blindsided by a breast cancer diagnosis, whether it be early stage or Stage IV. After the initial shock of hearing the word, “sorry to say, you have breast cancer,” I discovered from a wide internet search that most information about the disease was very clearly aimed at women. No surprise here, since we make up less than one percent of new cases. Once I was told the type and stage of cancer, Inflammatory Breast Cancer, Stage IIIB, I felt an urgency to learn all I could about treatment and even its prognosis. I ended up on many useful support forums and asked as many questions as possible. At appointments with healthcare professionals, I was sure to take my partner as a both record keeper and a person to ask those questions a patient in shock obviously won’t ask.
After treatment commenced, and the questions mounted up, I found a good place to find further information was with one of the major breast cancer communities, BreastCancer.org, which had hundreds of threads and over 100,000 members. Unfortunately, very few men posted here, but over the years there has been a storehouse of posts, and these answered many of my questions.
There are also male breast cancer Facebook support pages, some private, some public. Man Up to Cancer is a general page for all male cancers, but with a male breast cancer cohort. The Male Breast Cancer Global Alliance has a public Facebook page. Both are ready to help newly diagnosed guys with any questions they might have.
I am also part of Surviving Breast Cancer’s Private FB group which is open to those diagnosed (men and women) as well as caregivers. I also just started a private group specifically for males with breast cancer via SBC’s private groups which you can access both on their website as well as through the SBC app.
Another Facebook support page recommended to me was Beyond The Pink Moon, a very large community of women and men who have been helping each other for 12 years now. While I didn't find many men here at first, that’s not the case nowadays. Obviously, due to the stigma affecting guys with this disease, they are shy about posting on a predominantly female forum.
A genetic test is recommended for all men with breast cancer. In my case, since my mother passed away, aged 40, from the disease, it could have been expected that I inherited the disease. It turned out that I had a variation of unknown significance of the BRCA1 gene. This is an ambivalent result of no clinical significance.
Most of the information about treating male breast cancer comes from doctors’ experience with treating female breast cancer. The main treatment for breast cancer in men is surgery to remove the tumor. This is usually a mastectomy because of the small size of a male breast. Chemotherapy is the post-common adjuvant treatment after surgery and your oncologist will work out a regimen that best suits your type and stage. Radiation can also be used as adjuvant therapy. Male breast reconstruction is almost always performed as a “delayed” procedure, after completion of all other breast cancer treatments.
You may be lucky enough to be assigned to a breast care nurse at your hospital. Whilst, these expert nurses are more commonly dealing with women, I found they really were a great source of information and support for guys as well. Finally, the hormone-blocking drug, Tamoxifen, is prescribed for at least five years.
Men generally have a poorer prognosis because of their reluctance to see a doctor in a timely fashion. And when they do present, their health practitioners are often not thinking of breast cancer as a possible diagnosis. There is also no screening program for men, even for those with a genetic predisposition to the disease. And mainstream breast cancer charities are not pushing hard enough the message that men can get this disease too.
Don’t fall into this cohort, know your risk, check yourself, and present to your primary care provider in a timely fashion.
Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently, he’s NED for both. He’s President, Board of Directors, Male Breast Cancer Global Alliance, has a website at MaleBC.org and you can follow him on Twitter @malefitness
His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext