The voices of men with breast cancer are often unheard, however they are voices which have unique stories to share. In this article, the lived experiences of men with breast is discussed with expert opinions provided from a male breast cancer survivor.
Breast cancer affects both women and men. Whilst it is true that females represent approximately 99% of breast cancer diagnosis’, men diagnosed with this condition often feel stigmatised and overlooked by both mainstream society, corporate fundraisers and health professionals.
The gendered language and colouring (pink) of almost all breast cancer material and fundraising promotions can make men who are diagnosed with breast cancer feel overlooked or sometimes invisible.
Male Breast Cancer in Australia
According to the National Breast Cancer Foundation about 1 in 500 Australian males will be diagnosed with breast cancer in their lifetime.
Breast cancer is the number one diagnosed cancer in females in Australia (more than 20,000 cases in 2023), whereas breast cancer in men is uncommon (more than 200 cases in 2023). The average age a male is diagnosed with breast cancer is 71 years old.
Breast cancer screening for men is not recommended in Australia, although there are future intentions to include men with a genetic propensity towards the disease.
Experiences of Men with Breast Cancer
How men respond to a diagnosis of breast cancer was the topic of a study from researchers in the United States.
The researchers conducted interviews with the 24 male breast cancer participants on their experiences during and after treatment. Following these interviews, six major themes emerged which are discussed here.
All quotes have been taken directly from the original manuscript.
Theme 1: Death as a reality
The diagnosis of cancer compelled many men to address their own mortality. As one participant reflected,
“I appreciate life a lot more. Before my cancer, I didn’t take life seriously. I took life for granted. I didn’t appreciate people in my life and the things I see. So, after cancer, [it] was a good kick in the butt. Just how much you appreciate it, and also made me realize to go after my dreams, chase it, and achieve it. Go after it and every day is a gift”.
For some men, the diagnosis provided opportunity for reflection on personal health habits,
‘I think [the diagnosis of cancer] really emphasized that for me the fact that I had vulnerabilities of this nature. That I needed to stay focused a little more on my health in terms of eating properly and losing some weight and getting some more exercise, and that sort of thing.’
Theme 2: Unique personal insights
Some men expressed that being open and sharing their story assisted in their cancer journey as they drew support from others,
“I think that being a male and having had breast cancer has given me strength in a way and it′s given me purpose because I saw the benefit of speaking out”.
As cancer treatments progressed, some men reported changes in occupational participation due to treatment side-effects such as fatigue, pain, mood and loss of libido,
“I feel very guilty about my ability to do things, you know, with my wife that I used to be able to do more easily”.
The body scarring following a mastectomy wasn’t seen as a barrier by some men,
“The surgery and my scar were going to tell a story. It is my battle wound. The scar is just going to be there, it’s a conversation piece”.
Theme 3: Social environment
Some men in this research study discussed their experiences of stigma following being diagnosed with ‘a women’s disease’.
“When I would tell people, that′s when it would bother me because they wouldn′t believe you. I’d say, “I′ve got cancer.” “What kind of cancer?” “Breast Cancer.” “Oh, you full of shit, man!” … and I was like, “No, I’m not, you know, I wished I was” … but that is the part that bothers me the most because it happened even at the cancer center where I would get treatment”.
Other men put their focus and energy into participating in new social support environments,
So, I found the men’s group. And even though I was the only one with breast cancer, I found it more comfortable and helpful. But I think that fact they had a specific men’s group, it was very important in my journey and in my recovery… I really found that women would react to me in a different way
Theme 4: Interactions with the healthcare system
Men reported mixed experiences when dealing with the health system following a breast cancer diagnosis.
“And the radiologist looked at me, and I can tell that she was kind of nervous. And she starts adjusting the machine, up and down and back and forth. And I could tell she’s really nervous, and I can tell she just isn’t quite sure what to do with a man. And I actually turned her on I said, ‘you′ve never done a mammography on a man have you?,’ she said ‘No.’ I said, ‘OK, why don’t you think of me as a flat chested woman.’ And do whatever you do for a woman like that. Then it’s like a light bulb went on over her head”.
While others reported feeling engaged with health professionals who took time to listen and support them on their cancer journey,
‘The person who had the most impact on my recovery was a oncology nurse navigator, who called me… I had some fairly lengthy conversations about how, you know, patients of hers have reacted to the medications, and to the surgical procedure itself. And provided a level of both knowledge and comfort for me that…and I think a lot of people look at it like no one’s ever going through this but me…. So, the recognition that…yes you’re…I am unique and my experiences are unique, but there are hundreds of people out there, thousands of people out there, who are going through their own unique path with the same thing.’
Theme 5: Decrease in occupational engagement due to side effects.
The multiple tests and treatments required following a breast cancer diagnosis can place a heavy toll on occupational work and regular activities,
“I was off for a couple weeks for my surgery and then when I was going through chemotherapy, I would take off the day of the chemotherapy initially and then towards the end of my chemotherapy um started to catch up with me. So, I was working four days a week when I began my chemotherapy and by the end, I was working three days”.
Men described the impact the treatment had on their roles as husband and father with impacts on their masculinity,
“The aspect of losing my libido was you know that’s had an effect on my wife it’s denying her an aspect of our marriage, and that’s been hard”. Another man noted, “I′m the breadwinner, you know, I mean my wife works as well, but I’m the main breadwinner, so I need to be out there doing it”.
Theme 6: Finding meaning in new occupations
Finding meaning in being an advocate for men with breast cancer was a new occupation the men in this study expressed.
“The goal was if I can help one male through that, it was done. I achieved my goal. But one person, you know, I mean once you get that satisfaction from that, you just have to keep going”.
Male breast cancer study conclusion
The researchers concluded their study into the experiences of men with breast cancer by reinforcing that, ‘All health care providers must maintain a client-centered approach that provides space for the unique experiences of each client and not fall into stereotyping which may stigmatize or marginalize the client’.
Expert Opinion: Rod Ritchie- Male breast cancer patient advocate
Stigma
The most common reaction from men when they are diagnosed with breast cancer is, I didn’t know men got this! Following this is embarrassment, they often feel a stigma having what the community perceives to be a female disease.
Unfortunately, even before diagnosis, men have often delayed their medical appointments and are presenting with symptoms later. And, anecdotally, men are more reluctant to seek timely medical care in general. The subsequent later diagnosis means their prognosis is not as good as with women who get quicker attention once their annual mammogram picks up something of concern.
Pink Charities
For too long now men have been blindsided by this cancer. Year after year the pink charities run the same meme. Imagery is only of women and the color pink is everywhere. They have exacerbated the stigma men feel.
At a huge breast cancer fun run, a few years ago, I asked for a turn at the microphone. The M.C., looking somewhat askance, passed it to me and I said, “this disease is genderless, men, if you feel a lump, get it checked out, if you have a family history of breast or prostate cancer, join a screening program.” The microphone was almost pulled away from me after this. I’d broken the cone of silence surrounding men and this disease. Well, I didn’t care. Unless we all make a noise, we’ll never change anything.
Men have breasts, too, and they can therefore get breast cancer. We might be only one percent of new diagnoses, but when you’re in that group with this disease, it’s just as real for you and your family as it is for our breast cancer sisters.
