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When Tony was diagnosed with breast cancer a few years after his sister, he noticed some differences between their experiences. Since then, he has been trying to spread the word about male breast cancer.
My sister had been diagnosed with breast cancer three or four years before me, so I thought it might be useful if we compared some of our experiences.
When I had surgery, I was in a hospital room on my own. I never spoke to anyone else. My sister, on the other hand, was on a ward with five other people, and she’s still friends with some of them now. I didn’t even meet another man with breast cancer until years later.
After that, there was chemotherapy, which I had a pretty bad time with. I had to go back to hospital twice: once with a high temperature and once with severe back pains. I lost my hair because of it, which wasn’t really a big deal for me, but my sister had long hair, so it mattered to her.
I finished with three weeks of radiotherapy before being put on tamoxifen. I’ve just finished taking it after 10 years, and it caused me leg pains, sweating and a loss of libido. My sister experienced similar side effects when she took it, too.
Once I'd finished active treatment, the surgeon and breast care nurse were keen for me to take a genetic test to see if I had any BRCA gene mutations. After some counselling, I decided to do it, and it turned out that I did. My sister and her daughter then did the test and found out they were both carrying the altered BRCA2 gene as well.
My children initially didn’t want to know, but my son ended getting tested after reading a newspaper article that I’d been involved with. My daughter went for counselling and eventually decided not to take the test, but she goes for an annual MRI scan, which I'm happy about.
I felt some guilt around that for a while, as I worry that I’ve passed the altered BRCA2 gene on to my granddaughters.
I am glad I got tested, though, as it meant I later joined a study which tracks the progress of people with altered BRCA2 genes. As my hormone levels were being regularly tested, I found out I had prostate cancer. For that, I needed hormone therapy and seven-and-a-half weeks of radiotherapy. Having hormone therapy on top of tamoxifen just made it worse.
Men can be slow when it comes to detecting the symptoms of breast cancer. It may be because it’s seen as a woman’s disease, and therefore an affront to their manhood, but maybe they don't realise they can get it. There’s definitely work to be done in raising awareness in men.
There also needs to be improvements in the support offered to men. As far as I can tell, side effects of treatment such as hair loss and alteration to body shape have bigger impacts on women than they do men. However, with men, there is greater concern about feelings of isolation and the side effects of hormone treatment, so we need to talk about that.
Since my diagnosis, I've become a volunteer with Breast Cancer Now. I've done some fundraising and tried to increase awareness, which I'm quite passionate about. I'm also a Someone Like Me volunteer, so other men who get a breast cancer diagnosis have someone to talk to.
Most recently, during the last year, I've been involved with a virtual support group for men with breast cancer. We’ve really started to expand our aims and look for ways we can be more involved with awareness.
Whilst the number of men getting breast cancer is much smaller than that of women, men are notoriously bad at presenting symptoms and leaving it longer to get checked. Unfortunately, this means that a lot of people don’t find it until it’s incurable.
Because of this, we've got to get the word out – not only to men, but also their partners. If a man does start to show any symptoms, his partner will probably play a big part in persuading him to go and get checked out by a doctor.
Ultimately, breast cancer does affect men. If you feel something isn’t right, you should present to a GP as soon as possible. Early detection can mean a more successful outcome.
Around 370 men are diagnosed with breast cancer in the UK each year. To learn more about this and make yourself aware of symptoms, visit our information page on breast cancer in men.