Male Breast Cancer Resources
After the shock of a diagnosis, and about to begin treatment for breast cancer, I found that most information about the disease was aimed at women. This should have been obvious since men are less than one percent of new cases.1 Nonetheless, I had some pretty major reasons for wanting to access male breast cancer resources, because I was facing a diagnosis of inflammatory breast cancer. Really, it was an urgent matter to find useful support groups, ask as many questions as possible of the healthcare professionals assigned to me, and connecting with the breast care nurse assigned to me by my local hospital.
As treatment continued, and the questions mounted up, I found a good place to find further information was with the male breast cancer Facebook support pages. One such, MBCC Brothers, is a private community, which I had to ask to join. It’s a group of men who have been treated for the disease and who are ready to help newly diagnosed guys with any questions they might have. 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 10 years now. I then found that one of the major breast cancer communities, BreastCancer.org, had hundreds of threads and over 100,000 members. Unfortunately, very few men post here, but over the years there has been a storehouse of posts, and these answered many of my questions. But, I didn't find many men here, I guess because guys may be shy posting on a predominantly female forum. For this reason, I created MaleBC.org, a site with lots of useful information.
My male advanced breast cancer experience
After diagnosis, which for me began with chemotherapy because my breast area was inflamed, I was fortunate to come across the Inflammatory Breast Cancer Foundation to help me navigate this rare subset of breast cancer diagnoses. Chemo can be grueling, but I used the prescribed meds to avoid nausea and followed the advice of new research that proved exercise to be an important adjunct to the chemo infusions.
With breast surgery, I was fortunate to have a brilliant surgeon who removed one breast and all auxiliary lymph nodes from under the arm. And, when I was dealing with the inevitable seromas, the fluid that needed draining from the surgery site, I had full support from my breast care nurse.
When I was diagnosed, my oncologist suggested a genetic test. This is recommended for all men with breast cancer, but more so for me, since my mother passed away, aged 40, from the disease. My genetic test result was an ambivalent one, a BRCA1 mutation, but with a variation of unknown significance.
Once having been through the initial treatment of surgery, chemotherapy, and radiation, I was placed on the hormone-blocking drug, Tamoxifen, for at least five years. The side-effects I’ve had to contend with taking this drug, include headaches and sexual dysfunction. I’m fortunate not to have experienced others, such as hot flashes, skin rash, nausea, fatigue, and weight and mood changes.
Men need to know that the medical field for breast cancer treatment has many female medical professionals. All those treating me were highly skilled women who I had the utmost confidence in. In fact, I felt grateful that I was able to navigate the medical process with so few glitches, and that, six years later, I have no evidence of the disease.
Caregivers: Do you practice self-care?