Over the past 10 years, as a male breast cancer patient, so many medical and lay women helped me, from diagnosis to treatment and beyond. When my GP gave me the news that my biopsy revealed Inflammatory Breast Cancer, she had a team of experienced specialists lined up for me, all women.
Cancer Specialists
The first person I saw, a very experienced breast surgeon, could see at first glance that I needed neo-adjuvant chemotherapy to tame a very inflamed left breast before a much-needed mastectomy. She sent me to one of the best local oncologists who worked out a plan. Over 18 weeks, one day each three weeks, I underwent a regimen of three infusions of the FEC (Fluorouracil, Ellence, and Cytoxan) and three of Docetaxol. Her advice to me was: “don’t have any preconceived notions about any stage of the treatment”. This served me well, and I had a dream run, worry free, through this important stage of treatment.
The surgery that followed was complex because the cancer was in the chest wall behind the nipple, and included an axillary clearance which showed 2 out of 23 lymph nodes were tumorous. The surgeon was non-plussed when I asked if there was to be reconstruction. She explained that the lack of extra material found in the typical man makes it harder and actually inhibits her work to remove the affected tissue.
At a meeting with the radiation oncologist, she explained I would need 33 daily radiation treatments. Again, this was more of an inconvenience than a bad experience, and I was told that this treatment was “insurance”, in that it was aimed at rounding up cancer cells in my skin and in the chest wall.
Patient Advocates
Women predominate in breast cancer forums and social media, obviously, and without my many online friends I’d have been talking to the moon. A community forum on BreastCancer.org was the first internet search result that came up for male breast cancer when I was almost totally devoid of information on diagnosis. There were a few men here to share experiences, but given the genderless nature of treatments, the women were more than happy to share their experiences. Before long, Terry Arnold, founder of The IBC Network Foundation, came to my attention and I’ve been following her social media posts for many years.
In 2018 I was invited to the annual Project LEAD course for breast cancer patients in La Jolla, along with Kirby Lewis. I made so many friends there including Victoria Goldberg from the group SHARE. I now edit and write for them. The following year I attended SABCS in San Antonio. I now speak about male breast cancer at local functions, volunteer as a trained telephone counsellor and at a local infusion centre, and appear in a variety of media educating and informing the public. My website can be found here.
While some Facebook groups were catering for men, very often guys were very reluctant to even come online for help, and to relate their experiences, because they were either embarrassed and/or feeling the stigma of them having a disease perceived as being exclusively female, they kept out of the limelight. Whilst some posts were a wealth of information, others are just chatty. But chat is good when you feel like you are navigating a wilderness, and I pretty soon felt the virtual hugs from the many magnificent women.
It was on Twitter (now called X) that I found my real tribe. This no-frills medium was packed with useful information shared by both medical professionals and patients alike. Here I found a deep camaraderie based on an exchange of information, answered questions, emotional support, and a plethora of links to sites that contained research that form the basis of my technical knowledge of breast cancer.
Generous with their time, super friendly, and a mine of information, I can’t thank the breast cancer women enough for their support.
Rod Ritchie
President
Board of Directors
Male Breast Cancer Global Alliance