By Harvey I Singer
Co-Founder
HIS BREAST CANCER AWARENESS FOUNDATION, Inc.
April 2016
“Sir, You Have Breast Cancer!”- Imagine hearing those words on the other end of your phone?
In October of 2008, those were precisely the words relayed to me from the radiologist the day after my breast biopsy.
The news wasn’t all that shocking, considering the 10 days leading up to the biopsy I had run the gamut of other breast cancer diagnostic tests. The mammogram, the ultrasound showing calcification, and the concern from the tech administering my test all were pretty telling.
About three years before my biopsy, after her third diagnosis of “female” breast cancer, my younger sister Vicki informed me she had a panel of genetic mutation tests. She discovered she was a carrier of the BRCA2 mutation. Of course I never thought in a million years I would be diagnosed with breast cancer, so I listened to her information and was concerned only for her health.
In August 2008 I noticed a slight soreness in my left nipple area. I also saw a physical change, a folding over or indentation of my left nipple. It still didn’t sound any alarms in my mind.
It wasn’t until I was spending a weekend with my “Philly Boyz” group and one of my friends gave me a big bear hug that the alarm sounded. While being wrapped up and squeezed, a pain shot from my left nipple into my shoulder. Something was up! Upon return, I pointed out the small lump I found under my left nipple to my wife Donna. She paused and said, “You’re always looking for something. If you’re that worried about it, make an appointment with your doctor.” Five days later I saw my primary physician. It took her about 40 seconds of a breast exam to immediately direct me to the imaging center.
Male breast cancer has been an incredible journey. One I had no interest in taking, but life maps your course and you can either navigate that course or drive off a cliff. I chose to educate myself with as much detail and information on all aspects of my cancer and utilize the information to make educated decisions.
After a complete mastectomy of my left breast, I quickly learned the healthcare system was not set up to accommodate men with breast cancer. In 2008, there was NO information on how to combat male breast cancer. Zero! Something had to change, I had to help change it, but first I had to get through chemo.
After receiving a high score from my Oncotype DX test, I had to decide the best course of chemo treatment for my stage one, node negative, E+, P+ breast cancer. There were three different recommendations for three different types of chemo. Cytoxan, Taxotere and Adriamycin were proposed, but I eliminated the Adriamycin from the equation. When I learned Adriamycin had many links to leukemia and lymphoma, I didn’t want to beat my breast cancer and have to deal with a blood cancer! My attending breast oncologist actually disagreed heavily with this decision. She took my case to her “tumor board” where the oncologists met twice monthly. She came back to me and said, “Well, half the oncologists in the room agreed with me and half agreed with you. I guess it’s your decision.” It was my decision and I made it, albeit reluctantly as I was just a patient with no proper medical training. I relied on what I had learned from my own research, my two other oncologists’ opinions, and made the decision. Did I make the correct one? I guess I will never know for certain, but I have not had any recurrent breast cancer diagnosis and no Leukemia, after seven years.
Once healthy again, Vicki and I created the first advocacy foundation for male breast cancer, HIS Breast Cancer Awareness Foundation, Inc. There were some other groups out there, but mostly organizations in memory of a dad or brother who had died from the disease. All during the three and half months of chemo, I began to write. You know, all of those sleepless nights, wondering what would come next? Writing was my outlet. I have a journalism degree, but have never really penned anything of substance. In 2010 I published, through Amazon, my book titled: “Sir, You Have Breast Cancer.” All proceeds from every book sold goes directly to the HIS Breast Cancer Awareness Foundation. The book is not a woe is me biography, but rather a look back at my life leading up to my diagnosis and all of the trials and ridiculousness I experienced being a man going through a “women’s” disease. I wanted the reader to know I was just a normal child of the 60’s and 70’s and offered some insight to those times as well. I wanted people to realize this disease can hit any man and I was just as unlucky as you may be. Come to find out, luck only played a small part in my diagnosis. Genetics was the real reason!
Eighteen months post breast cancer surgery, I was diagnosed with BRCA 2 Induced, early onset prostate cancer. Another non-surprise, as I was under the supposed watchful eye of a leading urologist for an increasing PSA two years before my breast cancer diagnosis. This was not a metastasis from my breast cancer, but a whole new cancer, also caused by being BRCA 2. There was only a six and a half percent chance I would get male breast cancer from carrying the BRCA 2 gene, but more than a 45% chance I would get early onset prostate cancer from it. Lucky me, I got both!
I have fought through prostate surgery, all of the lovely post surgical implications, and continue to screen aggressively for any recurrences. I chose not to have bilateral mastectomy, because at the time I just wasn’t ready to make that decision. I am very aware of my right remaining breast and alternate six month mammograms, with breast MRIs. I also perform a breast self exam on a weekly or so basis. My world of follow up screening and diagnostic tests is quite cumbersome, but it’s what we cancer patients do if we want to continue to be proactive.
Between Vicki and me we have five children, all boys. Because we are BRCA2 positive, each one of our boys has a 50/50 chance of also carrying the mutation. We had to make things better for our kids. We had to make people aware of the role genetics plays in breast cancer for women AND men. My youngest son and Vicki’s oldest son have been tested and were both “NEGATIVE!” We’re in the process of working with the other three boys on when they will be tested. It will happen. Additionally, our older brother Jeff has been tested and he is also positive. Three siblings, all positive! To date, Jeff has not had any cancers diagnosed, thank goodness.
My journey has been amazing. I’ve met so many incredible people who are all working for the same cause. We have assisted men from all over the world as they take on their personal journey. Most are extremely appreciative for the education we provide and directions we point them. HIS Breast Cancer Awareness Foundation, Inc. is a fully recognized 501 (3) (c) Non-Profit organization. Our goal has always been to raise awareness to help men realize they can get breast cancer and they can DIE FROM IT!
I often say I’m not sure why I was destined to have this disease, but maybe it was because “I would be the guy to do something about it!” I do not take this role lightly. Seven and half years later, I’m still here. I’m still shouting from the mountaintops to anyone willing to listen about the risks of MBC and the additional risks of being a carrier of a BRCA mutation. They are many who are listening and many others who don’t.
Vicki and I always buck the trend of answering the question, “Are you cancer free?” For anyone who is or lives closely with a cancer patient, you know as we do, you are never “cancer free.” There will always be some migrant cells running around our bodies, attempting to latch on and create a tumor. We prefer to respond with, “I’m cancer non-detectable right now.” This may sound awkward, but it IS what the reality is. It helps us to understand it.
I am still working full time as a Director of National Accounts for the world’s leading brand of chef clothing and restaurant uniforms. I am also still working full time running the HIS Foundation with my younger sister Vicki.
I’ve seen many, many changes over the past seven years in our tightly knit world of MBC. There’s still so much more to improve. This has become my life’s work and that will never change. I often say that I have two full time jobs: One that “pays” me and one that “rewards” me! At some point, being in my early 60’s, I will retire from the “paying” job. That will never happen from the “rewarding” position. I am signed on for life!
EDUCATE. ADVOCATE. INSPIRE. LIVE.
