Sitting in my doctor’s waiting room for a visit to find out the reasons for a breast lump, I recall that 50 years earlier, my mum had breast cancer. But, as a guy, on that day, the last thing from my mind was cancer, and I was relieved when on this visit, and a subsequent visit, I was assured all was well. A month later, with an obviously inflamed chest, I insisted on an ultrasound. When the sonographer’s eyes nearly popped out of her head examining the screen, I knew I was in for bad news. And, when it came via a phone call from my doctor, a well-oiled modern medical system came into gear for me and I was treated with six doses of chemo before undergoing a mastectomy and auxiliary clearance, without reconstruction. The following 33 doses of radiation were sold to me as “insurance” for my aggressive Stage III Grade II inflammatory breast cancer.
I was lucky to have a very skillful surgeon, and she was bemused when I asked, “is there any reconstruction”? While it is possible to rebuild a facsimile of a guy’s breast, she explained, the lack of extra breast tissue makes this difficult and actually inhibits the surgeon who really has to work hard to round up the affected tissue. So, like nearly all men with breast cancer I know, no reconstruction is our lot in life. No complaints, though, and I’ve never met one of these men when a scar comparison wasn’t part of the greeting, along with a warm man hug.
Naturally, I scrambled to search the Internet for any information on my new disease, particularly as it affected males. I found out that while there was very little research on men, and treatments for women appeared to be effective for men. There was emerging evidence, however, that men with breast cancer could benefit from more personalized treatment. It’s now agreed that men have a poorer prognosis than women because we are diagnosed later due to our reluctance to present themselves, and since our health practitioners are not recognizing symptoms of the disease early enough.
At the end of treatment, my oncologist wrote me a prescription for Tamoxifen, regarded as the gold standard for guys since we are nearly all estrogen receptor positive. I know of no man who has had side effects from this drug, although I understand that it affects many women adversely.
Most breast cancer patients agree that post treatment is a new ball game. The security of regular medical contact slips away, you’re on your own, and as you get your physical and mental health into shape, you have loads of time to reflect. That is reflect via the medical minefield of the Internet. But here, while you find lots of discussion and fellowship, you’ll find few guys discussing this disease, since they’re generally loathe to talk about their medical issues, and many are very embarrassed that they have been diagnosed with a “women’s disease.”
The Sea of Pink
One percent of all new cases diagnosed are in males. As a man who is happy to talk about his breast cancer diagnosis and treatment, I’m always quick to point out that the care I received was first class and was equal to that of the many women I was treated alongside. But in a 2012 study that assessed more than 13,000 male breast cancers from the US National Cancer Data Base, men with breast cancer were found to be less likely to survive the disease than women. They are also more likely to be diagnosed with advanced disease; the overall 5-year survival rate in men is 84% compared to 90% in women.
October is a bad time for breast cancer survivors, because of the trivialization and sexualization of the disease by well-meaning groups and the pink charities, and since the commercial exploitation of the disease by many companies has reached great heights. And If you’re a guy with this disease, you’d better get used to pink, because that’s the color the breast cancer charities use in their rapacious advertising campaigns as they look for ever more funds for research, and yet more “awareness-raising” campaigns. That is yet more research and awareness for breast cancer in women, despite public awareness that breast cancer is genderless running at around 35%. Because the male cohort is so small, and the men so geographically widespread, we are rarely studied. And for the pink charities, we are an inconvenient truth that clashes with the “Save the ta tas” narrative. Breast cancer campaigns must shift from awareness-raising to evidence-based information that does not trivialize the disease, reinforce it as female, and does more to help Stage IV people.
So why are pink charities resisting adding some blue to their advertising and promotion efforts? Until they make more of an effort to de-gender this disease, they can own the situation that leads men to later diagnoses and poorer prognoses in men. Our manifesto lays all this out for them.
Choose Your Parents Wisely
Two years post mastectomy I had a prostatectomy as the sole treatment for an aggressive prostate cancer. By then I was well aware of the genetic risks and a BRCA gene test found a variation of unknown significance for BRCA1. Since my mum died aged 40 of breast cancer, and while I didn’t want to worry people unnecessarily, I also didn’t want to underplay the threat to my daughter and son, my siblings, and other family members. My daughter was admitted to a high-risk public screening program, but my son, with the same genetic history, gets no special screening.
Recently I have been fortunate to be included in a Boston College Study to find out the differences between men and women’s experiences in having a high cancer risk due to BRCA1 and BRCA2 gene mutations. Learning more about the genetics of the disease has taught me how important it is to include both genders in the discussion, since both each an equal part in passing on genetic mutations.
Treatment for mum 50 years ago consisted of a radical mastectomy and frighteningly high radiation doses that left her right chest horrendously disfigured. That was her full treatment, since chemo and hormone blockers were not then available. I realize I’ve been lucky to live in a wonderful medical era, and that I have benefited from many advances in breast oncology since then. But I’m determined to call out breast cancer groups that continue to ignore men. So that my buddies and those newly diagnosed, don’t have to go through treatment alone.
You can find Rod sharing information about male breast cancer on his site malebc.org
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