PUBLISHED ON: 19 October 2021

When Richard was diagnosed with breast cancer in 2015, he found that all his treatment was female-focused. Now, he is working to raise awareness and eliminate stigma for other men in the same position.

Richard, a white man with short hair, smiles broadly while wearing a blue and pink top

I had breast and prostate cancer

The way I like to tell the story is that cancer tried to get me three ways.

Firstly, there's the breast cancer itself, which was a ductal carcinoma. Thankfully, I caught it at a very early stage at the end of 2015. Then, at the start of 2016, I had a mastectomy and a couple of lymph nodes removed (which turned out to be clear), so that part of all of this is no longer a real issue for me.

I had prostate cancer as well in 2018, which was only picked up because I was being monitored through the PSA blood test. That is also no longer much of a problem.

Men tend to put off going to the doctor

The second way it tried to get me was through the lack of awareness and attitude of complacency in men.

I first noticed soreness around my left nipple, which, as a runner, I initially dismissed as jogger’s nipple. Then I noticed a small lump close to the nipple when taking a shower, at which point I decided that I should get a doctor to take a look at it.

Initially, when I went to the doctor, he said that it was probably a cyst and that I should come back in a couple of weeks if it hadn’t gone away. The problem is, in a man’s head that translates to: 'Everything’s ok'.

Statistically, it was more likely to be a cyst, but the doctor should have emphasised the importance of coming back – especially as us men tend to put off going to the doctor if we can. I know a guy who has a similar story to me; he left it 14 months to follow up and now wears a lymphoedema sleeve on a regular basis because the cancer spread to his lymph nodes.

Thankfully, I only left it about six to eight weeks before returning, and it was then that I was referred for the usual mammograms and biopsies.

When you go for a breast screening, it’s very female-focused. Going in on my own was pretty intimidating. When I subsequently had to go and get tested for possible changes in BRCA genes, I actually had to go to a maternity clinic!

Later, after I did a fundraiser that involved men, I sent some posters to a load of breast clinics to provide more representation.

I experienced a rare side effect of my treatment

The final way it tried to get me was the treatment.

I was put on tamoxifen, which I understand is quite standard treatment for women. I was only on it for a month before I was blue-lighted to hospital with pulmonary embolisms.

After that, my consultant looked at the numbers from someone in my position with my type of cancer, and the survival rate was about 90%. Taking tamoxifen would only have taken that up by another 1% or 2%, so it didn’t seem worth it. I no longer take any medication.

As far as I’m aware, men and women are slightly different beasts in terms of hormones, so why are we treated exactly the same way when diagnosed with breast cancer? The lack of research into male breast cancer at the time basically meant there was no alternative but to treat me the same way he would treat a woman. It also meant that my breast tissue was disposed of as there was nowhere for it to go.

Men are rarely mentioned in the conversation

About six months after the embolisms, I received an email from Walk the Walk. I had previously done a MoonWalk with them back in 2013 for reasons unrelated to me, but this time I felt I really had to get involved for male breast cancer awareness – especially as I felt I’d gotten away lightly with the treatment I’d needed.

When, in 2017, I went along to do the moonwalk with a friend, there was a stage with lots of speakers. There was frequent mention of how many women a year get breast cancer – but nothing about men. I gave them a bit of a hard time about it!

After that, they invited me along to the start of their ‘Men Get Breast Cancer Too’ campaign.

The first time we turned up, myself and five other men were given a pink t-shirt with a white bra, and we said that it’s not good enough.

All credit to Walk the Walk, they took that message on board. Their brand colours are pink and white, they have effectively tweaked the brand by giving every man involved in their events a pink t-shirt with a blue bra, and that was a major step forward in helping to raise awareness of male breast cancer.

Walk the Walk have been great since that initial event in 2017, organising several media events highlighting male breast cancer and giving it a high profile at their keynote events.

Erasing the stigma around male breast cancer is vital

Walk the Walk commissioned a survey, which showed that one in six men didn’t know they could get breast cancer, but I think that number is quite optimistic.

When I did a presentation with my local hospital trust, I asked the audience of cancer professionals how many of them were aware that men could get breast cancer before they entered their field. It was about 50/50.

It's important to get rid of that ignorance, but also the stigma. I previously did a video with a Chinese PhD student who wanted to take their research back to China, as the stigma there is so much greater and the mortality rate is much higher as a result.

We have a stigma over here, too. I’m not sure how we change that. Perhaps some more male representation in adverts, just to make people think. The imagery around it is very pink, and that can put people off.

Statistically, breast cancer affects mostly women, but it doesn’t affect just women. We need to talk about that more.

 

If you have an underrepresented experience you would like to share, you could help others who may feel alone. Find out about opportunities to use your voice to shape our work by joining our Breast Cancer Voices community. 

Breast Cancer Voices