JWT - Volume VII
Joe’s Wolfpack Trailblazers
OCTOBER 2020
I have this coworker and every October she wears pink every day in support of breast cancer awareness month. She would ask the rest of us to join her. I would ask her what about the men with breast cancer. She would exclaim 'real men wear pink'. She honestly didn't know of any men with breast cancer but she knew they did exist. In fact this year alone over 2500 men will be diagnosed with breast cancer.
When I was asked by Trevor Maxwell to help to create The Howling Place Facebook group earlier this year, I started seeking out men who had been diagnosed with male breast cancer to join the group. I felt they were a bit of a unicorn in the men's health cancer movement. I wanted to bring awareness to this type of men's cancer to this support group. I believe most men don't realize they can be diagnosed with breast cancer.
For me in some ways it was for selfish reasons. As an obese male who was born with an undescended testicle, I have already met a couple of the criteria for being at risk for breast cancer. I do monthly self breast exams for this reason. I hope this article will bring awareness to all men that may read it.
The third week of October is Men's Breast Cancer Awareness week. Join 'The Moobment' this month and examine your breasts. It could save your life because as we know early detection is the best prevention in any form of cancer.
I’m proud to share the cancer stories of these men from The Howling Place aka ' The Wolfpack' that are breast cancer survivors. Thank you to Bret Miller, Kurt DeAngelis, Ambrose L. Kirkland, Khevin Barnes, Mike Wyatt, and Steve Del Gardo for contributing your stories to this month's Trailblazer.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
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Bret Miller
BRET MILLER
KANSAS CITY, MISSOURI
STAGE I MALE BREAST CANCER
“Don't take life too seriously. You'll never get out of it alive.” ~ Elbert Hubbard, “Van Wilder”.
In August 2003, I was a typical 17-year-old guy. A senior in high school, on the football team, working for a country club at a pool and ice rink. One day I scratched my chest and felt a lump behind my right nipple. We did not have medical insurance at the time, so at a school physical, I asked two doctors to check the lump. They were not concerned and told me, “Let’s keep an eye on this…It’s a calcium buildup…You’re becoming a man…It will go away.”
Seven years later I got a job right out of college managing that same pool and ice rink I worked at in high school. Once I qualified for health insurance, I made an appointment for a checkup and asked the doctor to look at the lump on my breast. He immediately recommended a sonogram. Once the doctor on call, a female, came in to look at the scan, she indicated I should get a mammogram. A few weeks later, on April 27th, 2010, the lump was removed. The surgeon was also not concerned, so I still did not think anything was wrong. I thought since lump was gone, I was good.
The very next day the doctor called. He revealed to me I had breast cancer. He just blurted out the words, “You Have Breast Cancer”. He said he would call back in a few days after looking more closely at the pathology report. “Gee, thanks doc,” I thought. It felt like a joke. I thought I was getting punk’d and Ashton Kutcher was going to come out from the bushes with the cameras or something. The doctor did not immediately call back, so I soon realized this was no joke.
I called my dad and told him. I asked him not to tell mom since I was going into work and couldn’t really talk. Five minutes later, Mamma Bear calls and asks about 1,000 questions in 30 seconds. With Peggy Miller getting wind of this reality shaking news, we were meeting with the surgeon the next day!
About a week went by after meeting with doctors, plastic surgeons, and oncologists. When I met with the surgeon that performed the mastectomy is when I realized that men did not talk about this diagnosis. There were only twelve other men that he had performed a mastectomy on, and they hid their breast cancer from the people in their lives. Male breast cancer was a stigma and I decided that this would have to change. I posted my breast cancer news on Facebook for everyone to see. I wrote about my diagnosis, upcoming surgery, and chemo plans. It was also an easy way for me to let my friends know without having to tell them face to face.
On May 18th, 2010, I had a mastectomy. Along with breast tissue, my nipple and four lymph nodes in a one-inch margin around the nipple, were removed. Because of my scar, everyone says it looks like I am winking at them ( - )( ).
After a quick and successful surgery, I was given the good news that the cancer was gone! It was caught in the early stages and classified as Stage 1.
Originally, there were no plans for chemotherapy. The lump was small, Stage 1 DCIS, and following the testing of the lymph nodes via sentinel lymph node biopsy, nothing had spread. Chemo was not required but was an option to consider. My doctors told me about a new test called OncoType DX, which breaks down the tumor on a genomic level. This helped the doctors determine if I needed chemo and what type. It would also let me know the possibility of cancer coming back within a ten-year span. The test said I had a 22% chance of any kind of cancer coming back, and that doing chemotherapy could possibly drop those chances by 10%. I said, “Yes!” without hesitation.
I never thought it was possible for a man to get a “woman's disease”, but now I know that’s simply not true. I have no direct family history of breast cancer, the BRCA 1 or BRCA 2 gene mutation, nor any other mutations. As of September 3rd, 2020, my prognosis is still clear of cancer!
My mission now is to spread the word to everyone, young and old, that breast cancer does not discriminate. It can happen to anyone at any age, and to MEN too!
A couple of months following my mastectomy, I started The Bret Miller 1T Foundation with the help of my parents Peggy and Bob Miller. Only one ‘T’ in my name, and now one tit and one nipple for those keeping track… The goal of the foundation is to raise awareness in colleges and high schools, sharing that breast cancer can happen to anyone! Male breast cancer survivors share their journeys and let students know that they are the best advocates for their bodies. If they find something that doesn’t feel right, they must contact a doctor, and not ignore it. If they don’t like the given answer, to get more than one opinion, and not stop until they get answers. Early detection is the first step in the fight against breast cancer!
In 2014, I connected with Cheri Ambrose via social media, and together we created the Male Breast Cancer Coalition. Cheri is one of my angels. She had a dear friend who was diagnosed with male breast cancer and was treated the same way I was. Our goal is for no man to ever feel alone when he hears the words “you have breast cancer.”
Since my diagnosis, I talk about my breast cancer. I believe this was meant to happen to me, so that I could help others who are experiencing a similar path, and to continue educating young adults in prevention through early detection.
Kurt DeAngelis
KURT DeANGELIS
ALABASTER, ALABAMA
STAGE 1 MALE BREAST CANCER
My breast cancer was discovered while I was watching television in bed and cuddling with my wife, Vickie, who noticed a lump and asked how long it had been there. I was unaware that I had a lump, although my nipple was inverted for several months to a year prior. She said I needed to have our doctor look at it next time I visited him. About a month later, my primary care physician examined the lump and started the wheels turning on my first mammogram.
After undergoing a mammogram, ultrasound and then a biopsy, I knew the possibility of breast cancer was substantial. When the call came, I was numbed, but not shocked. My diagnosis was confirmed in May 2016: Stage 1 ductal carcinoma in situ in the right breast, tumor size of 1.7 cm x 1.0cm. I felt so bad that I was in Iowa on a work assignment when the biopsy results finally arrived. It was five difficult days for both of us being hundreds of miles apart. I was 59 years old.
Everyone in my family and group of friends was concerned, supportive and optimistic. My wife was exceptional through all of this. My friends and co-workers were incredibly supportive. Calls and visits during the recovery period were unbelievably valuable. Many, like myself, were not aware that breast cancer affects men too. I told my wife for years that I am a one in a million kind of guy…my oncologist corrected me and told us that I was only one in 833.
I underwent a right-side mastectomy and the removal of 27 lymph nodes. Multiple rounds of chemotherapy followed. The surgery was predictable, and the chemo was manageable. I was blessed with a great oncologist who educated me about the process and coached me on how to tolerate the side effects. Gin-Gin soft ginger candies were a staple to fight off the nausea. While I had the expected hair loss the nausea never progressed to vomiting.
Chemo brain or chemo fog was a real thing for me. My wife humorously stated that it was nice after almost 40 years of marriage that she was the “smart” one for once. The biggest challenge I now face daily is lymphedema and the constant management of the swelling. Compression shirts, lymphedema sleeves, etc. are a permanent part of my wardrobe.
Waiting for the genetic testing results was far worse than waiting for the results of the biopsy. I have three adult children and six siblings. Fortunately, the results were favorable for me and therefore all of us.
I am an Education Support Manager, and conduct food service training, assist with training and on-boarding of new trainers and consultants, special projects and maintain our training libraries for my company. I returned to work about a month after the final session.
I want people to know that breast cancer in men can happen. Every day I wear a lapel pin with a pink and blue ribbon. I explain to others what the colors signify. Each training session I conduct contains a PSA about Male Breast Cancer and a request for everyone present to share the information with the men they know and care about. Do not let men be ignorant, procrastinate or be embarrassed. Teach them how to check themselves and to stay vigilant.
Let us help the others get early detection, treatment, and support. Educate…Educate…Educate. Finally, the Male Breast Cancer Coalition should be congratulated for all the good work they do to make people realize this disease does not discriminate when it comes to gender.
Ambrose Kirkland
AMBROSE L. KIRKLAND
TALLAHASSEE, FLORIDA
MALE BREAST CANCER SURVIVOR
For a male breast cancer survivor like myself, getting through each day in itself sometimes amazes me how I survive. Just because I’m in remission doesn’t mean that things go back to the way they were before this crazy disease we call breast cancer came into my life. And yes, that’s right, I said, male breast cancer.
However, I want everyone to know; I wasn’t thinking breast cancer when I found out and I sure as hell wasn’t thinking Pink. First, I hate Pinktober and I find most of the campaigns that they have for Pinktober are extremely tacky and demeaning for women. I also detest this “Save the Tatas” bullcrap.
I Wasn’t Thinking Pink. Women have breasts, not ta-tas. We need to spend more time trying to save the lives of women and stop focusing on their breasts. “Eyes up here men!” And yes, you men. Guess what? You can also get breast cancer. Oh hell yes. I wasn’t thinking Pink. Hell when I found out, I wasn’t thinking of any color. I was thinking about how I was going to live. Everyone is so focused during Pinktober on this freaking color of Pink that they’ve forgotten the big picture. Trying to save lives.
Men Get Breast Cancer Too. When I found my own lump, I wasn’t thinking Pink. When I started having a discharge from my left nipple, I wasn’t thinking Pink. When my doctor told me I needed a mammogram, I wasn’t thinking Pink. When I was told there were calcifications on my mammogram, I wasn’t thinking Pink. When I needed a lumpectomy, I wasn’t thinking Pink. When I was told, “Mr. Kirkland, you have breast cancer,” I sure as hell wasn’t thinking Pink. When my doctor cut into my body and removed all the breast tissue in hopes of saving my life, I wasn’t thinking Pink. When I had ten and a half painful weeks of radiation, I wasn’t thinking Pink. Every time I hear of another breast cancer brother or sister gaining their wings, I’m not thinking Pink.
Pinktober will never erase the pain or the scars and you will never get back to being who you were before. But you have to always remember that you have support, loved ones, support groups, websites, someone is out there for you. But please during this month: Stop thinking Pink. Breast Cancer is now: Pink and Blue. Men Also Get Breast Cancer.
Khevin Barnes
KHEVIN BARNES
VALE, ARIZONA
STAGE I GRADE THREE MALE BREAST CANCER
On May 11, 2014, I received a message on my cell phone from the surgeon who had, just days before, performed a needle biopsy on a tiny lump in my left breast.
“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, six 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 that it’s understudied, largely overlooked and blatantly ignored by the pharmaceutical industry because there’s no money to be made here.
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 and the rest of us respond 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 276,480 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S. this year, and 42,170 will die from it. When I was diagnosed, the odds of a man contracting breast cancer were 1000 to 1. In fact statistically, a man was more likely to accidentally drown in any given year than he was to contract cancer in his breast. There are just 2,620 cases recorded annually in the U.S., and about 520 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 twelve months was a dream-come-true for both of us.
And so in 2013 I left my fifty 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.
After my mastectomy surgery I was diagnosed with stage one, grade three breast cancer. Grade three indicates a fast growing and aggressive form of the disease, but stage one means that the tumor is contained, and that’s a good thing. Most males 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”.
Generally speaking, males find it more difficult to speak up when we find a body part out of whack. 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, 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, and that promptness possibly saved my life.
Information on cancer of the male breast is scarce, and few doctors routinely check for it. And 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 healthcare 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% chance of living ten years if I did nothing, and those odds were good enough for me.
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.
But today I am cancer free, or at the very least, symptom free. 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.
Khevin Barnes is a male breast cancer survivor, retired stage magician and musician. He has been a full-time contributor to CURE magazine since 2015 and is the writer/composer of a musical about Male Breast Cancer called ‘’THE SONS OF SAINT AGATHA”, currently searching for a producer or two to finance a national tour.
Mike Wyatt
MIKE WYATT
HAVELOCK, NORTH CAROLINA
METASTATIC MALE BREAST CANCER
I am 55 years old and live in coastal North Carolina, where I work in an office/administrative position. I’m married and am the proud Papaw to three wonderful grandchildren.
I was first diagnosed, aged 48, with Male Breast Cancer in October 2012, after noticing a palpable lump in my breast. I had a mastectomy with sentinel node dissection in November. My post-surgical treatment regimen was Tamoxifen, which I stopped taking because I felt so terrible. Genetic testing for BRCA genes was negative.
My initial disbelief at getting this disease was offset by the support of my family, friends, and colleagues, who had no idea that men could get breast cancer. It’s fair to say that getting breast cancer took a huge toll on my life and was a big financial burden.
In July 2017, aged 53, a chest x-ray showed a mass in my left lung, and I had surgery in October to remove the lower lobe. My new diagnosis was Metastatic Breast Cancer. I’m once again on Tamoxifen but tolerating it much better this time around. In September 2020 my scans showed disease progression with two growths on my adrenal gland. I have been put on a new chemo and we wait for scans to see how effective this course of treatment will be.
Breast cancer in men is real and life altering. I’ve made a conscious choice to enjoy life everyday with my wife, family and three grandchildren.
Steve Del Gardo
STEVE DEL GARDO
TAYLOR MILL, KENTUCKY
STAGE II MALE BREAST CANCER
I was 44 when I first felt a lump in my left pectoral area. My primary care doctor referred me to a well-known breast care institute nearby. At my first appointment, the receptionist gave me several forms to fill out. I couldn’t believe that all of the questions were geared toward women, asking about menstrual cycles, gynecologists and most recent mammograms. Even the sign outside read “Wellness Center for Women.” All I could do was sign and date the forms.
I had a mammogram and ultrasound and after reading my test results, my doctor recommended a biopsy. A week later, the results came back benign. He told me to come back in six months if the lump hadn’t disappeared. Instead of disappearing, it got bigger and painful but I trusted him, so I waited. I went back after six months, and he recommended a lumpectomy immediately.
When the biopsy results came back as Stage II breast cancer, I was shocked because I thought it was a fatty deposit. I did not expect a cancer diagnosis. My doctor recommended a mastectomy. I asked him about taking both breasts, but he said typically 90 percent of men don’t get it in the other breast. I told him I’m not a typical guy. I had a double mastectomy later that month.
After those two surgeries in November, I thought I was done with treatment. My doctor said there was a 30 percent chance of recurrence within five years, and I thought those were pretty good odds. He disagreed and recommended chemotherapy. Even though I really didn’t want chemotherapy because of everything I’d read, I took four rounds once every three weeks. I lost the hair on my head and my goatee. Some side effects were bad, especially the nausea and bone pain, but I got through it with great support from my family and friends. My hair grew back a little darker and a little wavier, and I lost 55 pounds, so those are two plusses.
During treatment, I got frustrated with the lack of resources out there for guys with breast cancer. I didn’t know anything about breast cancer, and when I did find something online, it was just a footnote. There were no support groups, and there was no one for me to talk to. That’s when I decided to start Protect the Pecs. I’d been through the pain and suffering, and I knew I could do a lot for male breast cancer survivors and their families.
Through Protect the Pecs, I am raising awareness about male breast cancer by telling my story at corporations, colleges and conferences. Not surprisingly, my audiences are usually made up of women because men are embarrassed about having breast cancer. I tell them not to worry about the word “breast”—just call it chest cancer or pec cancer. Women usually make doctor’s appointments for their husbands and sons so, by educating them, I’m also educating the men in their lives.
When I speak, I stay away from the doom and gloom. I was never that sort of person before, and I’m still not. Instead, I’m open and honest, and I use humor because laughter is one of the keys to recovery. Hearing about the first time I had a mammogram and how I ate hot wings before chemotherapy puts people at ease. I also mention things I’ve done that I never could’ve done before I had cancer, like speaking in front of big audiences and throwing out the first pitch at a Cincinnati Reds game without being terrified.
A lot of people are so very angry about having cancer. When I talk to them one on one, I tell them cancer is just a hiccup in their lives. Blaming and being negative doesn’t help. If you’re negative, I believe your body will get sick. When I was diagnosed, my dad told me to be positive and keep moving forward, that I’d get through it. Instead of lying face down in the fight against cancer, I came out swinging, using all my strength, positivity, faith and humor to beat it down.