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What it's like to be a man with breast cancer

Douglas Harper had no idea that men could get breast cancer. Until he was diagnosed with it aged 49. Here he candidly describes his experience.

Douglas Harper 54, from London. He's a father of five who was diagnosed with breast cancer in 2012 aged 49, three days before his 50th birthday. He had no idea that men could get breast cancer, and neither did his partner, family or friends. And we imagine you didn't either. Here's what you need to know to protect yourself and the men in your life:

It started with a cyst

"Towards the end of 2011, I noticed what I thought was a cyst on my left nipple. As a typical man I just left it and thought it would go away – it's what men do isn't it? And then just before Christmas, my wife said, 'You really ought to get that seen too although it's probably nothing'. I went to the doctors and we were laughing about it, and he said take your top off, so I removed it and his whole demeanor suddenly changed. He started typing a referral to the local hospital to the scanning department and I asked whether it could be cancer? His response was that, yes, it could be."

"I wish I'd brought someone to the scan with me"

"It was the beginning of January when I went in, and they gave me a biopsy and an ultrasound. I kept asking, 'Is everything alright?' And all I could hear was 'Whatever it is, it hadn't spread.' Looking back, this meant that there was something there but I didn't think it could be. She said she couldn't say and they would be in contact in a couple of weeks. I was told to come back to the MacMillian Brook, which was actually the cancer ward, but I didn't know this at the time. If I had put two and two together I would have worked it out – but then again I was in total denial.

"I was diagnosed three days before my 50th birthday. When they sat me down, all I could hear was the word CANCER in my head. I couldn't comprehend what they were saying and when I went back home my family was asking loads of questions, like what stage is it. I had to call the breast cancer nurse to ask again.

"When I called they told me it was stage two and that it hadn't spread. When they were telling me this stuff the first time I wasn't sure what was going on so I couldn't take any of it in. I did make a point of going on my own, but I think that's probably the reason why you take someone with you, so they can actually listen to what's being said.

"I'm quite a pessimistic person normally, but I kept thinking about what the woman at the scan had said – about the fact that it hadn't spread. I had to tell my four grown-up daughters and my mum, which was really hard. I made a point of putting it on Facebook once I'd told my family. It was something I really didn't want to be secret about."

"It hit me differently than I thought"

"Two weeks later I went for the pre-op appointment and ECG scan, and I got a call back from the breast cancer nurse. I honestly thought she was going to say they'd made a mistake, but she said you've got diabetes, so we're gonna have to cancel the operation. I couldn't have the operation as my sugar levels were too high, so I had to wait another six weeks to get them down. Just before I had the mastectomy my mum died suddenly, it was just all so bad. I was dreading the mastectomy but I just wanted to get it done and out of the way.

"I'd read some stuff about feeling depressed and having a sense of loss at losing a part of my body. However I didn't think it would affect me like that. Let's be honest: the nipple on a bloke isn't exactly integral! Yet I was surprised because I still mourned it.

"After my mastectomy, I was speaking to my doctor about chemotherapy and whether I should have it or not and he said that I had about 78% of living for another 10 years, and if I have chemo it might go up to 80%. He said I probably didn't need it but I said, 'Well I'd like that 2%'. I did two different doses of chemo. The first round was called FEC, which I didn't have a problem with. I was able to just carry on with my life. My doctor did say to me, 'You can be 80 years old and frail and the chemo doesn't affect you, and you can be a healthy 21-year-old and it does, it's just a lottery.' But the second round of doses called docetaxel really did me in, I just couldn't move."

"Everyone reacts differently to treatment. For me, losing my hair has had a really negative effect. I guess that's because it's visual proof that I have cancer. I have always had a fair amount of hair and I still got a shock when I looked at my patchy balding head in the mirror. Plus my best feature was my eye lashes!

"At the time I was doing the Breast Cancer Care fashion show to help raise money for research, which was one of the greatest experiences of my life, walking the catwalk in front of 1,000 people. Even though I was really struggling, I had to do it."

Treating men presents unique problems

"Tamoxifen is actually a drug for women. There hasn't been any research on it for men because fewer men are diagnosed with breast cancer. I get tired, forgetful, lack concentration... the list is endless. I supposedly have to take it for five years, and I have done four already, but most people I know have to take it for 10 years. I am worried if I come off it next year my cancer come back. It's like a double edged sword."

Support is essential

"I've had all the support I could have hoped for throughout this time. Through doing the show and my blog, I hear people say their family went weird, but I have had nothing but the utmost support from absolutely everyone. The diagnosis has brought my family closer together and, the truth is, the nurses, receptionists, doctors and even the porters who helped me when I got lost in the hospital have been brilliant throughout.

"Before this, I ignored cancer. If something came up on the telly, I'd turn it over. I've also heard stories of men being embarrassed because it's a 'woman's disease'. The day after I announced it, I was at my football club supporting Leyton Orient and we lost. I was standing in this queue and friends were asking me if I was alright and I said 'I don't know what's worse, having cancer or watching that rubbish'.

"I'm a bit of an activist and campaigner and I've gone hell for leather in trying to get more awareness for male breast cancer, with starting with my blog One of 300 men and then going on to model in Breast Cancer Care's London fashion show. So many people don't realize that men can get breast cancer, and it has happened to me. I'm determined to get something positive out of it and let other people know."

By Doug Harper, told to Karen Gordon for NetDoctor

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