Breaking the silence

The lump was spotted, surgery performed and breast cancer was confirmed. Then the problems began for the patient, 52-year-old father of five, Mike Down. The surgeons said he would have to have a mastectomy, but he did not know what that would mean for a man.

Mr Down is one of the 200 to 300 men who develop breast cancer in the UK each year, and he quickly discovered that all treatment and advice available for breast cancer is geared towards women. There was nothing for men.

"They said that to do stretching exercises after surgery I should brush my hair every morning. But I don't have any," says the bald Mr Down.

Now researchers from the University Hospital of Wales are launching a survey of the 2,000 to 3,000 men living with breast cancer in the UK to redress the gender imbalance. The £49,000 study is funded by the charity Breast Cancer Campaign, the first time it has backed research on men.

Dr Jonathan Gray, a consultant in medical genetics who is leading the study, said men responded differently to the diagnosis from women. "In the small group we looked at, there was more shock, because the diagnosis was so unexpected, and there was a perception of stigma.

"One man stopped going swimming, and another told his grandson the scar was an injury he had received fighting with the Hussars – a sword cut not a surgeon's cut."

Many of the men felt embarrassed being given information aimed at women about bras, and when they went to the pharmacist for their supply of tamoxifen, the anti-cancer drug, they would get comments such as, "this must be for your wife", which left them feeling awkward.

"There are 240 new cases of breast cancer in men every year, and they are getting no information, no literature and no idea of what will happen to them. We want to find out what will help them," says Dr Gray.

Ignorance about the disease in men leads to long delays in diagnosis, averaging six to nine months. Mr Down's wife Carol was the one who raised the alarm in his case – by insisting he go to the GP.

He says: "I had noticed a lump but I thought it was a piece of gristle. A couple of weeks later the nipple inverted and my wife sent me to the doctor. He said that men didn't get trouble there and told me to come back in a month."

Mr Down, an engineer from Bridgend, Mid Glamorgan, returned regularly to the surgery over the next four months until his wife, a mental health nurse who had read about male breast cancer in a magazine, insisted on a second opinion.

He was referred to the Princess of Wales hospital, where in May 2001 the lump was removed – and cancer was confirmed. Three weeks after that he had a mastectomy – removal of the layer of fatty tissue stretching from the nipple to under the arm, including the lymph nodes.

"I never felt really bad about it. I always thought I would beat the disease. But for my wife it has been really horrendous. Every person up to the point where the cancer was confirmed had said it was nothing to worry about."

Some men have suggested that talk of male "breast" cancer is stigmatising and contributes to ignorance of the disease. One issue to be addressed by the survey is whether it should be given another, more masculine name, such as pectoral cancer.

Dr Gray says: "Pectoral cancer has been suggested, but it is not strictly correct because this is a cancer of the fatty tissue not the muscle that underlies it.

"We want to find out if men are using a different word but it is probable that most are not using any word. They prefer not to talk about it."

Pamela Goldberg, the Breast Cancer Campaign chief executive, says: "Because breast cancer is a rare disease in men the tragedy is that when it does happen, men are unlikely to recognise it and often neither do their doctors.

"We have anecdotal information from men that they feel very embarrassed and alone. What we want to do is turn the anecdote into evidence that will help those who are affected by breast cancer."

Men with breast cancer wishing to take part in the survey can contact the Breast Cancer Campaign on 020-7749 3700

Breast cancer in men and in women: the facts

* Male breast cancer accounts for about 1 per cent of UK breast cancer cases.

* Approximately 200 to 300 men are diagnosed with breast cancer in the UK every year compared to 39,200 women. For women, it's the commonest form of cancer in the UK.

* In men, most cases occur between the ages of 60 to 69. In women, 80 per cent of cases occur in post-menopausal women (over 50).

* For men, the average delay in diagnosis (from noticing symptoms to receiving diagnosis) is six to nine months. This is due to the presumption that breast cancer is a woman's disease, and men's aversion to talking about it. Between 2 to 3 women in 10 delay visiting the doctor for 12 weeks after discovering a symptom.

* More than 100 men die of breast cancer each year; 12,800 women die each year. About 74 per cent of women are still alive five years after diagnosis. Survival is similar for men if diagnosed early.

* Treatment for men is the same as for women.

Charlotte Cripps