Here's what I wish I had known before my diagnosis of male breast cancer:
1. I wish I had known that men can have breast cancer too.
I'll start with the big one. I've heard this from many people since my cancer diagnosis. "I had no idea that guys could get breast cancer!" It's not that I thought it couldn't happen, but rather that I thought it wouldn't happen— at least not to me.
And while breast cancer in men is rare and the odds of a man contracting the disease when I was diagnosed in 2014 were 1000 to 1; it's still a force to be reckoned with. Its very scarcity is reason enough to shine the light of public awareness upon it.
2. I wish I had known that having an "orphan disease" didn't mean there were no support groups for guys like me.
Six years ago I was told repeatedly that very little research had been done on my kind of cancer. Certainly the pharmaceutical industry had little incentive to develop a drug regimen that specifically targeted breast cancer in men. It was an isolating experience for sure. But that very same year "The Male Breast Cancer Coalition" showed up on my radar and I knew I was off to a good start.
3. I wish I had known that the enormous amount of research on female breast cancer was crucial in helping men along the way.
Despite the contrasts in our anatomy, and the fact that men respond to certain chemo therapies differently, there really is no black and white way to see breast cancer.
The advances in combating this disease in recent years have included improvements in testing and diagnosis for all of us. A good example of this is in "Oncotype DX testing" which was approved for widespread use in 2011. Liquid biopsy technology has taken off in recent years also. In June 2016, the FDA approved the first liquid biopsy test for a gene mutation in blood from lung cancer patients. New advances in "Immunotherapy" have been discovered as well, and the list goes on. The point is, not all new cancer discoveries are gender specific. I wish I had known that.
4. I wish I had known that despite their good intentions, oncologists are people too. It's OK to ask questions and to question medical strategies.
A fresh cancer diagnosis can leave one feeling helpless and fearful. It roars into our lives like a locomotive, pushing away all but the direst of thoughts. It's easy to go limp as we listen to medical jargon and discuss methods and procedures that might actually do more harm than good.
I now know that as patient advocates we are ultimately responsible for our own well being, and it's important to understand the benefits and drawbacks of our travels through survival by asking questions of our medical support staff, and to read the small print on every box and bottle.
5. I wish I had known that the horrors of having a life-threatening illness in my body and the threat of dying as a result would actually soften with time.
My cancer diagnosis was a frightening experience. It took many months before I realized that even though I might be living on "borrowed time" I was definitely still alive. And that became the simple truth that was my focus from that moment forward. I still wake up as a cancer survivor every day. But life is a risky business.
Every time I get into my car to run to the grocery store it's easy to forget that I'm sitting several inches above 20 gallons of highly explosive fuel. But I still drive. We become accustomed to living with the risk of cancer's return, because we have to. I sure wish I would have known that.