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Here’s What It’s Like To Be A Man With Breast Cancer

On May 11, 2014, I received a message on my cellphone from the surgeon who had performed a needle biopsy on a tiny lump in my left breast just days before.

“Hi, Khevin. I have a bit of bad news…”

Her message was brief and to the point, and I can still replay it in my mind, even four years later. There were a few quiet words, an apology with a hint of disappointment, and suddenly my life was changed forever.

I was a man with breast cancer.

Most men I talk with are surprised when they hear that guys can actually contract cancer in their breasts. It’s an “orphan disease,” meaning it affects fewer than 200,000 people nationwide and is therefore understudied, largely overlooked and blatantly ignored by the pharmaceutical industry because there’s no money to be made there.

I’m not mad about that ― mostly because I understand that’s how the world works. I am determined, however, to be an active participant in the group of men who create changes in the way the medical community responds to guys who share this rare disease.

It’s no secret that the clinical research on the cause and treatment of breast cancer in males is grossly underfunded. After all, an estimated 266,120 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S. this year, and about 41,000 women will die from it in 2018. The odds of a man contracting breast cancer are 1,000 to 1. In fact, statistically, a man is more likely to accidentally drown in any given year than he is to contract cancer in his breast. There are just 2,550 new cases recorded annually in the U.S., and about 480 men die from the disease each year.

Male breast cancer found me while I was a full-time resident at the Palolo Zen Center in Honolulu, Hawaii. My wife and I had been practicing Zen meditation for a number of years, and continuing our practice while living in Hawaii for 12 months was a dream come true for both of us.

And so, in 2013, I left my 50-year career working full time as a stage magician in California, stored my possessions and headed to Honolulu to live in a Zen Buddhist temple in the jungle, high above the beaches of Waikiki.

As you can imagine, life was simple there. We ate vegetarian meals, studied the teachings of Zen, sat every day in meditation, worked in the garden and walked on the beach. I suppose that’s proof that a healthy lifestyle in paradise is no guarantee of a healthy life.

But if Zen taught me anything, it’s that stuff happens, and we can choose how we react to challenging moments in our lives. Naturally, I was alarmed, frightened and surprised by this cancer I never knew existed. But I was also very aware that I was alive at that moment and needed to carefully consider my game plan while preparing for the possibility that my time on earth could be seriously shortened.

Khevin's mammogram from May 2014.

Courtesy of Khevin Barnes

Khevin’s mammogram from May 2014.

After my mastectomy surgery, I was diagnosed with Stage 1, Grade 3 breast cancer. Grade 3 indicates a fast-growing and aggressive form of the disease, but Stage 1 means that the tumor is contained, and that’s a good thing. Most men are found to have a more advanced degree of the disease and that’s only because we are slow when it comes to getting help with what many men still think of as “a woman’s disease.” I suppose it’s a guy thing ― the way we are conditioned to “take it on the chin” and get back to our “hunting and gathering” as soon as possible.

Generally speaking, men find it more difficult to speak up when we find a body part out of whack. Diagnosis and treatment procedures are disconcerting to many men as well, and guys are more likely to attribute a symptom such as a breast lump to some other cause. So, by the time many male breast cancers are discovered, they are often already at an advanced stage. In my case, I was visiting my primary care physician for an entirely different matter when I was asked, “Is there anything else going on that we should talk about?”

“No,” I replied, as I puffed up my chest, impressed with my own perfect health. My wife, who was at my side, chimed in, “Honey, why don’t you show him that little bump you found?”

I was scheduled for a mammogram the next day. I chose to think of it as a “man-o-gram,” which made me feel a little better about the procedure. That was followed by an ultrasound and needle biopsy. I was in surgery for a mastectomy of my left breast less than 30 days after that visit to my doctor, and that promptness possibly saved my life.

After careful consideration, and two opinions from oncologists in Hawaii and California, I made the choice to forgo the chemotherapy recommended in situations like mine. I based my decision in part on the fact that I had been the caregiver for my former wife who, after several years and many rounds of debilitating chemotherapy, died at the age of 47 from ovarian cancer.

Information on cancer of the male breast is scarce, and few doctors routinely check for it. When it is diagnosed, the standard course of treatment recommended is the same as that for women, since there isn’t a lot of historical data to guide us. There are a number of health care professionals who question the effectiveness of many of these treatments, and new research has shown that men do indeed react differently to traditional chemotherapies such as tamoxifen. I was told I had an 80 percent chance of living 10 years if I did nothing, and those odds were good enough for me.

Cancer is at once a mind-gripping nightmare into a world of the unknown and an auspicious gift, provoking us to gather our lives, confront our vulnerabilities and discover our strengths.

The choices we make are ultimately our own and they are never easy. After all, a cancer diagnosis is an expedition in extremes. It shatters every thought and plan we have about our future and leaves us with many more questions than answers. It is at once a mind-gripping nightmare into a world of the unknown and an auspicious gift, provoking us to gather our lives, confront our vulnerabilities and discover our strengths.

In the first months after my diagnosis, my thoughts were virtually hijacked by the uncertainty of my future. That uncertainty hasn’t changed after four years, and the fact is, it never will. But the intensity of those thoughts and fears has softened significantly.

A large part of the initial anguish I felt with my cancer was in the realization that I would have to give up pieces of my life that had great meaning to me. “Perfect health” was a big one. As a competitive runner for nearly 40 years, I was proud of my healthy body and my ability to run repeated marathons. Cancer took that away. I gave up the thought of ever having a chest that looked “normal” again. And I gave up the steadfast belief that I was certain to live long enough to be an old man. Cancer erased much of what I had assumed to be true about my life and my future.

But today I am cancer free, or at the very least, symptom free. As I approach the five-year anniversary of my initial surgery, I continue to monitor my health through a yearly mammogram and via ultrasound testing. Fear of recurrence is the top concern for cancer survivors (after fear of dying) so I’ll remain vigilant for the rest of my life. The only real complaint I’ve had over these past five years is the degree to which my mastectomy scar has caused me some discomfort, often subtle but sometimes significant.

There is a good portion of my breast missing, after all, along with some important nerves and a lymph node or two, but it’s not unusual to experience this stiffness along with the pain that comes with having a portion of one’s body removed. True to the advice I share with all men, I check my remaining healthy breast regularly for any sign of cancer, while sharing my experiences with the hope of helping others who are new to cancer.

Khevin sits in meditation at Saguaro National Park in Arizona.

Photo by Melissa Holland

Khevin sits in meditation at Saguaro National Park in Arizona.

Thanks to my daily practice of slowing down through Zen meditation, I now feel that I can move on with a renewed capacity to immerse myself in the freshness of what each moment may bring. And most importantly, I can fully accept that this whole cancer experience is part of the deal I’ve made with life itself. I’ve been given a second chance. A new beginning. An extended trip. This is the encore. And my hope is to live it boldly and without hesitation, right alongside this crazy cancer disease that has come along for the ride.

As for what other men can learn from my experience, my best advice is listen to your spouse, partner or significant other. They want what’s best for you, and that extra prodding might be the thing that gets you into the doctor’s office and saves your life. We also have to take matters into our own hands ― literally. We need to get used to feeling our chests and under our arms regularly and keeping an eye out for any unusual changes, no matter how innocuous they may seem. Early detection is always a good thing.

Finally, just as we must get comfortable with the fact that we are aging ― and as we age, we open ourselves to changes in our bodies, not all of them good ― we also need to stop thinking of breast cancer as something that only women face. Breast cancer is no more a “woman thing” than being a pilot or a senator or the leader of a country is a “man thing.” The times have changed and so have medicine and science and human awareness, and so, we must change too.

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