It's important that we keep banging the drum for breast cancer in men

Can you tell us a little bit about yourself?

I’m a retired accountant and I was diagnosed with a stage 2 ductal carcinoma back in 2015. When I was told about the diagnosis, I was surprisingly laid back – almost horizontal was the expression I've used.

I had a left breast mastectomy in early 2016 and I was put on the hormone blocker tamoxifen. I had a major reaction to the drug, and only took it for a month.

Prior to that, I had no idea that men could get breast cancer, despite doing things like Wear it Pink. I’d seen nothing about men getting breast cancer.

What was it like for you as a man to go through breast cancer? 

It’s hard walking into a clinic where everything is focused on women. In those days, there was nothing related to men.  

I went for the BRCA gene test and I was sent to a maternity clinic. That wasn’t really a problem for me, but I know that there are men out there that would really struggle with that. Last time I went to the breast clinic, I was called Rachel. I know other men who’ve been called Mrs. That is not acceptable or professional.

When inclusivity is high on the agenda for everybody, that should include men with breast cancer as well.

You now volunteer with Breast Cancer Now and you help lead the Men’s VMU. What motivated you to get involved? 

I started raising awareness about breast cancer in men when I did the  the Moonwalk with Walk the Walk in 2017. That was the start of it. 

From there, I started looking on the Breast Cancer Now website to see what I could do. I joined Breast Cancer Voices, a network of people affected by breast cancer who influence research, campaigns and more by sharing our experiences. I've done the odd podcast and research study for Breast Cancer Now too. I also trained as a Someone Like Me volunteer. 

From there, I joined the Men’s VMU. I was looking for what I could do to raise awareness of breast cancer in men, provide support or get involved in research.

Tell us about the Men’s VMU

The Men’s VMU was started 4 years ago by Dr Kerry Quincey, a psychologist who did her PhD on male breast cancer. After completing her PhD and identifying a gap in support for men, Kerry set up the VMU with 1 of her interviewees. The Men’s VMU now has 50 members, and we’re growing.

We’re focused on supporting members, particularly those with a recent diagnosis. It's an opportunity for us to share our experiences as men, in clinics and with treatment.

We meet online once a month. We often have guest speakers from research or support organisations who help us learn more about their work and the support out there.

Why is it important that there’s specific support for men?

There are a lot of support groups out there for women. So when a man needs support and goes to a women’s support group, some groups will welcome him with open arms, but others don’t offer such a positive experience for men. I think that’s primarily because there’s a lack of awareness that men can get breast cancer too, and that they also need support.

So, at the men's VMU, we're trying to provide a safe space for men to talk about their experiences.

What can be done to improve outcomes for men and help them get support?

If you look at the outcomes for men, they're worse than for women. Men often just put their head in the sand when faced with medical issues. We don't get our symptoms checked early enough. We just think, ‘Oh, it's a pain in the chest. Ignore it and it'll go away.’

Part of the problem is that men don’t know that they can get breast cancer. So, it's important that as a group we keep banging the drum for breast cancer in men.

What would be the first thing you'd say to a man who's been newly diagnosed?

Don't panic. And don't be afraid to challenge the experts. It's your cancer journey, you're entitled to know everything about it.