Ouch,” I mumbled, rubbing my chest. I’d just opened my car door to get in, and bashed the corner into my right side. It was really sore, but after massaging the pain away I soon forgot about it. But a few days later, I noticed a lump to the side of my right nipple. I thought it was just a swelling from that bang.
“Do you think it’s OK?” I asked my wife, Amanda. She had a look, and didn’t think it was anything to be worried about. But when it was still there after a fortnight, I decided to get it checked out by a doctor.
My regular GP wasn’t at our local surgery in Capel St Mary, Suffolk, UK, so I had it examined by the locum. I also mentioned I’d been hurt by my car door. He took a good look and said, “It’s just some bruising and swelling. Give it time and it will go down.”
But the next week it was still sore and hard, so I went back, and this time managed to see my regular GP. She felt the coin-size lump with her eyes closed, and I noticed her frown. “I can feel a lump and I’m really not sure what it could be. I suggest you get this checked out at the breast care clinic in Ipswich,” she said.
I wasn’t worried – it was exactly where I’d bashed myself with the car door, so must be connected, I thought. Besides, I was 44, healthy. with a good job as a horticulturist and a daughter Charlie, seven, and a little boy Louie, four. Not for an instant did I think it could be anything serious.
It was strange being at the clinic alone though. I was the only man, surrounded by women who must have thought I was waiting for my wife. That in a way justified my belief that nothing was wrong. I’d never heard of a man getting breast cancer – like most men, I’d thought the likelihood of that was about as high as a woman getting prostate cancer.
I had an ultrasound – men don’t have enough tissue for a mammogram – which confirmed an unidentified lump. “It doesn’t look anything to worry about,” the consultant assured me. “It doesn’t look nasty and is probably just excess fatty tissue.” But I began to be concerned, not worried but wanting to know for sure what was happening.
As a matter of routine I was advised to have the lump surgically removed, an operation that was scheduled for March 18, 2010 under general anaesthesia. It went smoothly. An incision was made just above my right nipple so the lump could be popped out, and I was assured scarring would be minimal.
I was told that as a matter of procedure they’d send the lump for a biopsy to check there was nothing there, and the consultant said he didn’t expect to see me again.
Then, on March 29, completely out of the blue, I got a call from another consultant at the breast clinic. “I’d like you to come down to the clinic for a chat,” he said. “Try not to delay.”
Fear pulsed through me; I hadn’t been expecting this. “Is it good news or bad?” I asked, my heart thudding.
“Why don’t you come down here. We can talk about it,” he said.
I drove to the hospital not knowing what to expect. All along the way, I kept hoping that he would tell me it was nothing to worry about and that I could relax. But at the back of my mind I had a feeling there was a not- so-good reason for him calling me over to the hospital.
The first thing that caught my eye when I entered the consultant’s room was a little blue book that the nurse and the surgeon were jotting down something in.
I remember seeing a similar book when I was caring for my mum Brenda after she was diagnosed with liver cancer. It was a book used to note all visits to see her oncologist. Straight away I knew it was bad news.
My mouth was dry as I sat down. “We’ve found cancerous cells in the lump and surrounding tissue,” the surgeon said. “We need you to undergo a biopsy and a mastectomy.”
His words punched into me, making me reel. How could I have breast cancer?
My first thought was of Amanda, 43, and Charlie and Louie, and the worst-case scenario flashed through my mind. I was confused, shocked and couldn’t take anything in. My world had fallen apart in seconds. Another consultant named Helen Gray explained what would happen next and gave me various leaflets to read and said if I had any questions I could call her.
All the leaflets had drawings of a woman’s breast and not a man’s, and the explanations were detailed towards women, which as a man can be a little alarming and off-putting.
Stumbling out of the room, I dragged myself to the hospital car park. Then slipping into my car, I called Amanda. “It’s cancer,” I said. “Breast cancer.”
There was a long silence at the other end. “Are they sure?” she asked. I was trying not to panic. “Yes,” I said, forcing myself to sound calm. “The... the biopsy has come back positive.”
“Can you drive home or do you want me to come and pick you up?” she asked. I knew she was trying hard to stay calm. I mumbled I could drive and with all kinds of thoughts racing through my mind, set off for home.
As soon as I walked in Amanda hugged me. “Don’t worry,” she said. “We’ll fight this.” She was extremely supportive, and it helped enormously, stopping me from losing control.
We’d spend hours sitting up after the kids had gone to bed, talking through worst-case scenarios, how each of us was feeling, trying to get a handle on what was happening.
While we knew it would affect the whole family, we decided not to tell the children as we wanted life to carry on as normally as possible. We just told the kids I had to have an operation on my chest as the word ‘cancer’ would have frightened them.
Of course, Amanda and I both cried a lot, but often late at night when the children were asleep.
I was assured I should make a full recovery with the right treatment, but the doctors couldn’t be sure how far the cancer had spread until I’d had the mastectomy. That did scare me – I’d discovered the lump in November 2009, had the lump removed on March 18, 2010 and now it was March 31. How far could the cancer have spread by now?
I didn’t google it, ask friends or look for support groups – I had all the information and support I needed and didn’t want to overly worry myself by finding scare-mongering information online that might not be relevant. I was obviously concerned about how I’d look without one breast, but was told I could have a tattoo to replace the lost nipple – and I knew the operation had to be done.
I didn’t want to burden colleagues with my news but my boss had to be told as I’d need time off work, and he was very understanding. Like Amanda and most people close to me, he was shocked but also supportive.
Wanting to vent some of my feelings I kept a blog, highlighting the highs and lows of a man diagnosed with breast cancer (andrewtokely.wordpress.com) through which I had lots of encouragement from men and women alike. On a brief search of the internet I realised how few similar stories there were of men with breast cancer who sought solace and help from their wider community – I knew there must be hundreds of men out there like me, but it seemed very few wanted to tell the world or find support. If nothing else, I wanted to change that, to take away any taboo so in the future men could benefit from the dozens of emails and messages of support I got from strangers as well as friends.
I was booked in for the mastectomy on April 20. I went to hospital while I insisted Amanda stay home to look after the children.
I woke up from the hour-long operation later that evening and I was told everything had gone well – the consultant told me they’d removed all the cancer cells they could. I had a lot of discomfort in my under-arm area, but I’d been warned this would happen, so didn’t let it bother me too much.
Amanda came in to see me that evening. “Don’t worry, the op has gone well,” she said, kissing me. “The doctors have said that you can come home tomorrow.” She was obviously relieved but still worried in case the cancer had spread.
The next morning I was in for another shock. Just before I was to leave, the consultant came by and sat by my bed. “I have to tell you that you may need to return for further treatment.”
The cancer had spread to my lymph nodes, which they’d removed, he said, but I would need further treatment to prevent the cancer returning. My battle certainly wasn’t over yet but I was glad to be in safe hands. Amanda shed many tears that evening, having hoped we could get on with our lives as normal again. I knew I had to be strong and have faith in my doctors, but inside I was scared. We then realised we had to tell the kids as I’d have to have chemo and lose my hair and experience all the other side-effects, which we wouldn’t be able to explain away easily.
“I have something to tell you guys,” I said, calling the kids to the dinner table in early May. Then very matter-of-factly I explained to them what had happened, what the likely treatments would involve and how they didn’t need to worry. Charlie, then nine, didn’t want to hear and ran upstairs, but Louie, then six, took it surprisingly well and asked lots of questions.
“Will you die, Daddy?” he asked. “Will you be OK? How are you feeling now?” Eventually Charlie came back downstairs so we had a family chat about what I was about to go through. We were glad we told them about my condition. It helped me deal with it better. I had six sessions of chemotherapy every three weeks over a four-month period – losing my hair pretty much straight away – followed by five weeks of targeted radiotherapy. I didn’t mind about losing my hair – my health was all that mattered to me, and not how I looked.
Even though my taste buds had been wiped out by the chemo, I insisted on eating properly to keep my strength up, having three home-cooked meals a day with fresh meat and veg and lots of fruit in between. In the end I had only two weeks off work and kept myself active as much as possible, taking regular long walks and carrying on with my gardening. Since my treatment finished that autumn, I haven’t looked back, although like many women who’ve had breast cancer, I have had to take the hormone-altering drug Tamoxifen every day for five years, which I’ll hopefully stop next year.
One of the few charities that seemed to offer support and advice for both sexes was Breakthrough Breast Cancer, which was a fantastic breath of fresh air. I now go for yearly check-ups and so far I’m assured all is well.
Of course, at the back of mind there’s still the worry it will come back, but I have to get on with my life. What my breast cancer has taught me is to appreciate my family and my health more than ever, organising regular trips out together.
While I’m not averse to talking about my cancer with people I meet, I don’t volunteer that information unasked – but I’ve regularly made a point of chatting with other breast cancer sufferers through my blog.
The worst thing in my mind about being a man diagnosed with breast cancer is how every single last detail is aimed at women.
If you read the leaflet from my Tamoxifen pills, every side effect is for a woman. There are one or two that affect us all: chest pains, a shortness of breath, swelling of the legs. But then it also says you could have problems with the lining of the womb or hot flushes. As a man reading that, I had no idea what it might do to me.
And all the breast cancer charities have pink as their main colour. I know men are a tiny minority when it comes to breast cancer – around 350 are diagnosed each year in the UK compared to more than 50,000 women – but men have to know they can get it and need to be breast aware. I’m so pleased that Breakthrough Breast Cancer is leading the world’s largest male breast cancer study to find out more about the disease and is encouraging everyone to be breast aware. I’m just lucky I pushed for a referral when I was told to go home and rest. It’s why I can tell you my story here and enjoy every moment with my family.
Andrew lives in Capel St Mary in Suffolk
Detecting breast cancer early could save your life. For a free guide from Breakthrough Breast Cancer go to www.breakthrough.org.uk