Male breast cancer: what men should know

When Andrew Tokely found a lump on his chest, it never occurred to him it could be cancer. Now he hopes to help other men to become breast aware

Think pink. That's what most people do when it comes to breast cancer. Race for Life won't let you in if you're a man; even NHS leaflets around breast cancer are aimed at women. But men can also get breast cancer, as I discovered myself last year.

It all started when I banged myself on a car door. It was November 2009 and a few weeks later, when it was coming up for Christmas, I noticed a small lump about the size of a pea to the right of my nipple. It was hard and uncomfortable, but I assumed it was just bruising and swelling from the car door. I mentioned it in passing to a locum doctor when I went to pick up an asthma prescription and he agreed. It would go down soon enough, he said.

But it didn't. So in January, when I went for an annual asthma check, I decided to mention it again. This doctor gave the area a thorough examination and referred me to the breast clinic at the local hospital.

To the NHS's credit, I was given an appointment within a week. But even then, sitting in the waiting room with all these ladies, breast cancer didn't occur to me. Truth be told, I didn't know men could get it. The doctor was reassuring. He said he didn't think it was anything sinister, but it wouldn't hurt to do a few checks anyway. Since men can't have mammograms, he sent me for an ultrasound. Even that department thought it was just fatty tissue. But just to be on the safe side, they advised removing it. So last March, I had the operation. They made a small incision and out popped the lump. The doctor sent me on my way and said he didn't expect to see me again. Great, I thought, particularly when the stitches came out and you could hardly see the scar. That's the end of that, then.

But at the end of the month, I got a call asking me to come back. Ever the optimist, I thought they probably wanted to tell me formally that everything was OK. But this time, the doctor was accompanied by a nurse and beside her was a blue folder. I'd seen one of those before when my mum was diagnosed with cancer. My heart raced. Sure enough, he said the lump had come back with cancerous cells around the edges. I'd need a full mastectomy.

A mastectomy? I felt confused and the leaflets I was given made it worse. All the wording was about women and all the drawings were of women's breasts. Even the side effects of the drugs I'd be given related to the female body – no mention of a man's. I called my wife, Amanda, from my mobile phone in the car park. It was a conversation with a lot of silent spaces.

That night, we tried to act normally. We wanted to protect the children – then aged 12 and nine. In the coming weeks, throughout Easter time, I think most of our conversations about it took place at 4am. It was then that we experienced just about every emotion going – anger, fear, a lot of "why us?" and a few tears. There were times it didn't even seem real. I was 45 and felt well. I was a husband, a father and a horticultural manager – the words "breast cancer" just didn't fit. Friends, family and people at work couldn't believe it either. "Breast cancer? Really?" became a phrase I heard a lot. Even health websites weren't much help. Even the ones known for being brilliant for men had plenty of mentions of bowel and prostate cancer, but nothing about breast cancer.

Prior to my mastectomy, I was given a further biopsy – this time of my lymph nodes and that's when I learned the cancer had spread under my arm. They advised removing them within the same operation. That was probably the most painful part – for a good year, it felt as though there were two tennis balls strapped under my armpit, with occasional stabbing pains. Many people thought I might be more bothered about losing my nipple and it's true that I just have a big scar across that area now. I was offered a tattooed nipple instead, but I declined. I get the occasional stare at the beach, but I can live with that.

After the mastectomy, I was emotionally and physically exhausted, but was relieved it was over. Then came the mention of chemotherapy. I was shocked. My only other experience of breast cancer in the family was my wife's mother, whose operation and radiotherapy meant she'd been fine for the past 13 years. But my doctors were insistent on doing a belt and braces job because of the danger of a stray cell escaping.

It was time to sit the children down. Up until now, all they knew was that I'd had an operation to remove the lump and my nipple had disappeared. But we felt we had to tell them that dad was sometimes going to be ill in order to get better and that his hair might fall out and he might feel sick. I expected my 12-year-old daughter Charlie to be fine, but she didn't want to hear and ran upstairs. My nine-year-old son Louie, who I was far more concerned about, was clearly vulnerable, but OK. He asked a lot of questions, but he took it well. Their fear made me even more resolute to stay strong and positive and it was then I started a diary, which gave me a way of talking regularly about how I felt without having to bother anyone about it.

The chemo came out in large syringes, like something from a Carry On film. One of the women next to me had a bad reaction – she couldn't breathe. Amanda, who was with me, wasn't in a good way either – her dad had died from cancer on this ward and she couldn't help but cry. But I was OK and the whole process was over in about two hours, albeit with me feeling very sluggish afterwards. Only five more sessions to go, I told myself.

Three weeks later, I started to lose my hair. I remember being in the shower and seeing my hands full of it. After three days of it falling out in great chunks, I got my barber to shave the lot off. People say it's worse for women and I think that's true. Lots of men have shaved heads. It was the loss of my body hair that I found harder. I'm a hairy person and suddenly, I felt like a six-year-old boy. It was alarming losing my eyebrows, chest hair, arm hair and so on. It made me look like a cancer patient too, although everyone said that through it all, I looked well. I never got that grey, sallow complexion and apart from the mouth ulcers, lack of taste and hair loss, I did feel OK.

Once the chemo was over last September, I had radiotherapy, but I was OK with that – it only lasted a few minutes each day. The draining part was going up and down to the hospital every day for five weeks.

I had my last session at the end of October and I really do feel as though I've put the episode behind me now. My hair has grown back, albeit wispy, and I feel better than ever – certainly very lucky. Clichéd as it sounds, my priorities have changed for the better and I enjoy life and my family more than ever.

Like many people who have suffered from cancer, though, I want to do my bit to give something back. But I find myself facing a "pink" wall at every turn, with breast cancer seen as a woman's domain. It took ages to find a walk that allows men to participate, but I'm glad I persevered because I raised £240 on one walk alone.

OK, there are not too many of us men who have had breast cancer. I've never met another one yet. But then again, maybe I have. I suspect many men are embarrassed to say they've had it. I've come to the conclusion that it will take a male celebrity to have it to make people realise it exists.

In the meantime, as I have no embarrassment at all, I'll keep trying to spread the word. I want men to check their breasts just as women do. It's as simple as having as shower and feeling around your breast area for lumps. I'll keep trying to fundraise, too, contacting the more "pink" charities to put the case for men across. And I've turned my diary into a blog so that others can read about what having the cancer was like for me.

The Race for Life slogan focuses on women's fight to beat breast cancer. But it's not just women's fight – not just because men can also get it, but because husbands of women who get it are affected. Don't get me wrong – the work these charities do is invaluable, but I think it's time for men to stop being excluded.

Interview by Kate Hilpern

What men should know

* Around 300 men in the UK are diagnosed with breast cancer every year, compared with nearly 48,000 women.

* Very little is known about the causes of male breast cancer. Breakthrough Breast Cancer and The Institute of Cancer Research are currently carrying out the Male Breast Cancer Study, the largest study of its kind in the world. It currently has more than 700 participants, with the aim of reaching 1,000 over the next few years.

* As with women, the risk of male breast cancer increases with age. Most men who develop it are aged over 60.

* Recent research suggests genes that contribute to male breast cancer may be similar – but not identical – to those for breast cancer in women. This raises the prospect of specific targeted treatments for male breast cancer patients.

* While testicular cancer is more common with more than 2,000 UK men diagnosed each year, a similar number of men, around 70, die of male breast cancer each year.

* Most male breast cancer appears just below the nipple in the form of a firm lump. This can change the appearance and direction of the nipple. Due to men having very little breast tissue, male breast cancer growth may reach the skin, the muscles, the lymphatic system and spread beyond the breast before being diagnosed. It is therefore essential to get any lump in your breast area checked by a doctor as soon as possible.

* Most lumps in men's breasts are not cancer, but a condition called gynaecomastia.

To find out more about male breast cancer, visit breakthroughbreastcancer.org and to read Andrew's blog, visit http://andrewtokely.wordpress.com.