By Khevin Barnes
January 2017
Male Breast Cancer Connections
Gentlemen, if you’re reading these words—you’ve found the right place.
History has shown that one person can change the world. It doesn’t happen often, but when civilization takes a quantum leap as a result of revolutionary thinking, there is a shift in collective consciousness that propels us forward in unimaginable ways.
And when multitudes of us join together in a universal cause, the energy created is both tangible and life shifting. Such is the power of unity.
Cancer has created a need in our world for compassionate camaraderie. It’s a very human characteristic, this willingness to aid our fellow men and women, and it’s a tribute to our species and our planet with all of the terrorism and savagery we see around us these days that we steadfastly refuse to give up on one another. We come to the aid of those in need, and in doing so, enrich our evolutionary journey.
As a man diagnosed with breast cancer in May of 2014, I began to search for others like me. As fate would have it, there aren’t too many of us since male breast cancer represents less than 1% of all breast cancer cases. But I felt certain that if I looked around this big world by way of the Internet, I would likely find the help, information and hope I was looking for. Surely I thought, there must be a brotherhood of male breast cancer survivors willing to collaborate and connect with me and others like me to manage and conquer our cancer.
Enter the Male Breast Cancer Coalition.
Here on this web site, these pages are filled with information, inspiration and hope. It’s here that you’ll find a group of advocates intent upon bringing men with breast cancer, their families, spouses, partners and friends together with the purpose of building awareness and offering support. Cancer is certainly one thing we have in common, but our stories and situations both medical and personal are as varied as the men who come here.
Our ages and backgrounds are wide-ranging, but at the end of the day it’s our commitment to survive, thrive; share information and experiences that ties us together as brothers. And ultimately it’s our friendship and the willingness to be authentic and vulnerable while finding strength together–that makes this work.
Cancer support is an integral part to treating the whole patient. Probably the biggest advantage of support groups such as the MBCC is in helping us to realize that we are not alone — that there are other people who have the same problems.
In my own case I can enthusiastically report that the “spin cycle” in which my life had been operating in those first months after my diagnosis and surgery has slowed considerably. I attribute this in no small way to the interaction and dialogue I continue to have with this association of men—The Male Breast Cancer Coalition.
Whether you’re new to cancer, in remission, experiencing recurrence, helping a friend or just looking for an amazing group of guys to offer friendship and support, you’ll find in these pages an alliance of men and women standing at the threshold to recovery, inviting you in and holding the door. Welcome to the Male Breast Cancer Coalition. Welcome home.
June 2015
MALE BREAST CANCER
Getting over the man thing.
I hear the stories from men, newly diagnosed with breast cancer, who have experienced the discomfort of being tagged with what some have called “a woman’s disease”. Breasts, and I’m referring here to the female variety, have been the object of masculine conversations and attention for much of recorded history, so it’s no surprise that they carry a separate sort of identity than the breasts of the men who are doing the talking.
As a rather typical male in that respect, I admit that I too have been conditioned by the attitudes and suppositions of my manly predecessors, and only recently was able to break free of these preconceived notions I held close to my bosom, to reshape my judgment of human breasts.
I’m not suggesting that it’s easy to vanquish these stereotypical responses; only that it’s important to our healing as men to bust through the belief that we are somehow less man-like because our breasts have been removed. Or that we even have breasts, for that matter.
A 2010 study by Eileen Thomas of the University of Colorado Denver found that 43% of men said they would question their masculinity if they were diagnosed with breast cancer.
I can certainly relate since I too was the recipient of the brow-lifting expressions, along with gasps of disbelief and discomfort by friends and family who were startled to hear that I had a mammogram and mastectomy.
But it’s not just the un-manliness of breast cancer that deters so many of my gender. That same study revealed that fully 80% of men surveyed were not aware that men could even develop breast cancer and the majority could not identify any symptoms of male breast cancer other than a lump on the breast. Information on cancer of the male breast is scarce, and few doctors it seems, routinely check for it. And when it is diagnosed as in my case, 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. And there are a number of healthcare professionals who question the effectiveness of many of these treatments.
It’s not a secret that the clinical research on the cause and treatment of breast cancer in males is grossly underfunded. After all, nearly 240,000 women will be diagnosed with invasive breast cancer this year and 40,000 will die from it. The odds of a man contracting breast cancer are 1000 to 1 and about 430 die from the disease annually.
Sadly, men with breast cancer are less likely to survive the disease than women are, and this is due to a number of contributing factors.
THE WIMP FACTOR
Generally speaking, males 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. By the time many male breast cancers are discovered, they are often already at an advanced stage.
In 2014 I was completing a year of residency and study at the Palolo Zen Center, a Zen Buddhist Monastery in Honolulu, Hawaii. My wife and I had decided to take this wonderful break in our routine after traveling for nearly 30 years as stage magicians. Life there was peaceful and unhurried until one day when I was visiting my primary care physician for a routine check-up and I was asked, “Is there anything else going on that we should talk about?”
“No I replied” to which my wife who was at my side chimed in, “Honey, why don’t you show him that little bump in your breast?”
I was scheduled for a mammogram the next day, followed by an ultra sound and needle biopsy. I was in surgery for a mastectomy of my left breast less than 30 days after that visit to my doctor. All of this has extended my life.
WHAT’S TO BE DONE?
It’s unlikely that routine screening for men will be implemented any time soon since male breast cancer is so uncommon that even the American Cancer Society does not recommend regular checkups. They do admit however, that breast cancer screening for men has not been studied enough, leaving open the possibility that some progress may be made for early detection.
I wonder sometimes if a simple name change of the medical procedures might help men to talk more openly about their bodies. I’m thinking that a “man-o-gram” might convince more guys to have their breasts checked, especially the over 60 group like me, statistically found to be most likely to contract the disease.
But for now, guys have to take matters into their own hands. Literally. We need to get used to feeling our chests and under our arms regularly, keeping an eye out for any unusual changes, no matter how innocuous they may seem.
Guys, we don’t have to be dressed in pink. Pick a color that works for you. And get comfortable with the fact that you are aging. And as we age, we open ourselves to changes in our bodies, not all of them good. Early detection is always a good thing however. Breast cancer is no more a woman thing than being a commercial pilot, or senator or leader of a country is a man thing. The times have changed and so has medicine and science and human awareness. Together, men and women are busting through breast cancer.
Khevin Barnes is a Male Breast Cancer survivor, writer, magician and speaker. He is currently writing a stage musical about MALE BREAST CANCER AWARENESS with the hope of producing a national touring show in late 2017. He was diagnosed with stage one grade three breast cancer in May of 2014. Today he lives with his wife and cats in Vail, Arizona.