When I had an opportunity to connect with Susan G. Komen, they also offered me the chance to speak with a male breast cancer survivor. While talking to Komen, a world-renowned organization, was enlightening, I have always truly believed that personal stories are what makes the difference in getting men to open up about their health. I had the great fortune of speaking with Wayne Dornan, the former Chair of the Aerospace Department at Middle Tennessee State University.
About eleven years ago, Wayne discovered that he had male breast cancer.
In his own words, he had no family history of any medical maladies, except for “hypochondria inherited from his mother.” One Friday morning in May 2008, he was washing himself in the shower and felt a lump. He thought it was strange and became even more worried when he began toweling off. As he dried himself, he realized that his nipple was inverted, but he had no idea what these clues could mean.
Being a self-admitted hypochondriac, he immediately set up an appointment with his general practitioner. When Wayne removed his shirt, he remembers that his doctor’s face went from “a smile to a look of grave concern.” The doctor ordered him a mammogram, but when Wayne showed up at the imaging center, he was informed that the center didn’t do mammograms on men (which is a difference from what John Falk shared with me in October 2018). Already embarrassed by being the lone male around all these women, he went back to his GP and got an ultrasound instead.
However, the ultrasound was inconclusive, so he needed to have a surgeon take a biopsy. It was schedule for the following Monday. When the surgeon asked if he had any family history of breast cancer, Wayne replied with “Not until today!”
Results were available by Tuesday, but his surgeon had already told him, “no matter what the results are, you’ll have to come back because I don’t give results on the phone.” The only problem was that the surgeon was out of the office for the day.
Wayne was persistent and kept calling.
Eventually, he got a hold of his surgeon. He relayed the following excerpt from his book, How I Survived Breast Cancer: An Inspirational Journey of Hope and Fact:
“‘Wayne, you know I can’t tell you the results over the phone, I will be in my office briefly tomorrow morning, you can stop by then.’
‘I understand what you told me yesterday but I didn’t sleep last night, and I have already called your office four times today. Your nurse told me that they had received the biopsy report.’ I had been obsessed with negative thoughts since the biopsy and the thought of waiting until Wednesday morning to find out the news was to me, unbearable.
‘Are you OK, are you in a private place, and are you sure you want to hear the results on the phone?’
‘Yes I’m fine, you can tell me on the phone.’
My surgeon replied, ‘OK. The results of your biopsy are unequivocal; you have invasive ductal carcinoma.’
Over the next 15 minutes I just walked aimlessly through the University campus as the diagnosis: ‘invasive ductal carcinoma’ echoed through my mind. I felt numb, frightened, and very confused.
For the first time in my life I thought about the possibility that I might die. Until that moment, I considered myself pretty healthy. I was a 56 year old, 6 foot, 185 pound male, and until then, apart from the inevitable broken bones while I was a teenager, I had never set foot in a hospital. So the idea of having breast cancer was to say the least, hard to swallow.”
He realized he had to face this head on and scheduled a mastectomy for the next day. That Wednesday also happened to be his 57th birthday… talk about a bad present.
After his mastectomy, Wayne underwent more treatment to eliminate his male breast cancer.
He began chemotherapy and went on an estrogen blocker. To put it mildly, chemo was not a cakewalk for him. To put it a bit more bluntly, it was “like a living hell.” He had thirteen weeks of chemo, with infusions every third week.
He became neutropenic (lacking a stable immune system) three times. At one point, he was sitting in what he had dubbed the “penalty box” — a chair where further evaluation was needed. His oncologist came to ask him how he was feeling and Wayne said he was fine. With a puzzled look, the oncologist said he was considering hospitalizing Wayne because he had no immune system. Since he felt fine, however, he was able to avoid that trip.
One way Wayne stayed positive was through refusing to listen to his body.
If he had nausea, he would would eat, and if he felt fatigued, he’d get up and get going. Wayne thought that his “body was like, ‘You didn’t listen to me so I’ll do it.’ It’s all mind over matter.”
Eventually, Wayne finished chemo in Fall 2008 and took Tamoxifen (an estrogen blocker) for the next five years to reduce the likelihood of a recurrence.
While reflecting on his journey, Wayne realized how little he had previously known about male breast cancer.
In another excerpt from his book, Wayne shares:
“Moreover, I was a male! That was the weird part, I had a variety of thoughts racing through my mind. I didn’t even realize that men could get breast cancer, or why did this have to happen to me. If I had cancer, why couldn’t it have been a male form of cancer?”
Though he holds a PhD in neuroendocrinology and had been doing medical research all his life, he had no idea that men could develop breast cancer. Because of his background, he dove into the literature and found there was not much information about male breast cancer. For his own journey, he had received most of his insights from reading about females with breast cancer. He’s happy to see that the American Cancer Society is now reporting gender incidence but not deaths.
Yet, he was still embarrassed about his diagnosis at first.
But then decided he wasn’t going to be anymore. He decided that he wasn’t going to hide it; it wouldn’t define his life. This changed everything for him. He realized that sharing his story could help another man through it. He said, “Its ok to be afraid, but you gotta get over that quickly and fight this thing.” When he became comfortable with talking about it, he felt better with his own diagnosis.
Realizing his experiences with male breast cancer could change the conversation, Wayne has “turned this unfortunate event into a passion.”
Wayne retired a few years ago and spends a chunk of his time relaxing on the beach, a point which he was sure to reiterate numerous times to me. However, the bulk of his time is spent educating people about male breast cancer.
He’s impressed by how the breast cancer focus has changed over the years to include men in the dialogue, and he commends Susan G. Komen for its commitment to doing so. However, he still regularly attends medical conferences to make sure the voice of the male breast cancer community is heard. In his words, “If you scream it loud enough, people will hear you.” He’s not bitter about the emphasis on pink and females with breast cancer, but he also won’t stop changing the way we think about male breast cancer.
As a doctor, he is uniquely positioned to influence other medical professionals. He wants men to stop being excluded from breast cancer clinical trials. No one is doing it for spite, but gut reaction is that it’s a woman’s problem. He has firsthand experience with this, as he had qualified for a clinical trial for new chemo for early stage cancer to avoid heart failure, but was then disqualified because he was a man. Ultimately, his oncologist still got him into the study “unofficially,” but Wayne wishes that men can be part of this group without having to jump through extra hurdles. In speaking with researchers, Wayne notes that researchers have told him that they were going to make a concerted effort to remedy this.
He also targets the general public — both men and women — in education about breast cancer.
Wayne reminds men that “They have breasts too, and they can get breast cancer. Cancer doesn’t discriminate — it goes after everyone.”
In both men and women, recognizing signs and catching it early saves lives. These include:
- A painless lump or thickening in the breast or chest area
- Lump, hard knot or thickening in the breast, chest or underarm area (usually painless, but may be tender)
- Change in the size or shape of the breast
- Dimpling, puckering or redness of the skin of the breast
- Itchy, scaly sore or rash on the nipple
- Pulling in of the nipple (inverted nipple) or other parts of the breast
- Nipple discharge (rare) [86,88-89].
However, for men, the average time from discovering a lump, to actually doing something about it is much longer — from many months to a year. This makes their prognosis worse. If they notice a change, Wayne recommends they see a doctor ASAP. If they are in a high-risk group, they must be even more vigilant.
While cancer is a scary thing, Wayne also notes that treatments has changed so dramatically, but people don’t know that. Men are getting lumpectomies. Many people think it’s a death sentence, but that’s always not the case anymore.
At the end of the day, Wayne looks to a future without cancer.
Though he is presumably cancer-free, he still doesn’t consider himself a breast cancer survivor. He says, “I’m a warrior — that’s what I am.” He compares facing breast cancer to training for championship fight. “You must train everyday, and be the best fighter you can, so that when the championship fight is over; you will be declared the champion!”
This fighting spirit resonates to his core. He believes that we are getting close to curing cancer and that a lack of sustained money for cancer research is the limiting factor. Today, he serves on the Science Steering Committee for Susan G. Komen in hopes of helping to get closer to this goal.
His ultimate dream? A world where his granddaughter doesn’t even know what breast cancer is.
This post originally appeared on A Ballsy Sense of Tumor. It is republished with permission.