'What my sons need to know'

Cases of testicular cancer are doubling every 20 years. And while more men are now aware of the risks, says Linda Watson-Brown, few know about the part that family history plays

When Steve Young finally agreed to make an appointment with his GP, both he and his wife, Elizabeth, felt the only outcome could be a confirmation of their fears. Steve's testicular cancer was diagnosed between Christmas and New Year 1995 when he was just 28. A few days later, he had one testicle removed, followed by radiotherapy.

"I'd noticed there was something wrong for a while," recalls Elizabeth, 36. "Things just weren't 'hanging' properly down there, and I went on at him to get something done. I felt I was nagging, but I knew it just couldn't go on." Steve, now 36, admits he kept making excuses: "I told myself it was a hernia, I told myself I'd be embarrassed talking about it, I told myself that I'd only see a male doctor. In the end, it was all evasion. I can't explain it to this day but, deep down, I felt that something was seriously wrong too."

Steve's reticence in making an appointment is not unfamiliar. But as Male Cancer Awareness Month begins, charities are keen to emphasise the importance of early detection. This year, they particularly want to promote a heightened awareness of the hereditary nature of the disease.

Testicular cancer - known as the "young man's cancer", as opposed to prostate, which tends to affect the 50-plus age group - has risen by 70 per cent in the last 20 years. Now studies are indicating that, like breast cancer, family history may be just as important as self-examination and education. Scientists who discovered the second breast cancer gene, BRCA2, in 1995, say male cancer research is at least 10 years behind.

The impact of the diagnosis on Steve was heightened when his two brothers were also told, within months, that they had testicular cancer. Now researchers want to find out just how common and vital family links are.

The Institute of Cancer Research (ICR) coordinates the International Testicular Cancer Linkage Consortium to search for testicular cancer genes, and scientists are still trying to isolate a gene for testicular cancer. So far, 500 men are involved in the Consortium Project and nearly half of the families come from the UK. However, researchers say they need at least 300 more men to take part before their findings can be described as reliable.

"There is no doubt that there are testicular cancer predisposition genes and that they make a major contribution to testis cancer," says Professor Mike Stratton of the ICR. "The problem is that there are probably several genes and each of them in themselves only confers a small risk. This makes the genes difficult to find, and one way to overcome this is to get more families."

Testicular cancer incidence is doubling every 20 years and is one of the most hereditary cancers. A likely site was discovered three years ago, on chromosome Xq27, but more families with histories of the disease are needed to support this discovery.

Professor Colin Cooper, head of the UK's first dedicated male cancer research centre at the ICR, is clear about the importance of more research: "The discovery of the correct genes would have far-reaching benefits for patients and for relatives who could be at risk. Genes allow us to screen people at high risk of developing the disease; to predict how the individual's cancer will progress and to tailor treatment accordingly; and they also provide a target for new and more effective drugs. The big problem is finding enough families to help us precisely locate the genes."

It is believed there are several "low-risk" genes in testicular cancer families, making it more hereditary than almost any other cancer. While a woman whose sister has breast cancer has a two to threefold increased risk of developing the disease (compared to the general population), a man with a brother who has testicular cancer has an eight to tenfold increased risk of getting it himself, and a fourfold increase if his father is diagnosed.

The risks won't decrease with further research - but proactive action can be taken. Professor Stratton discovered BRCA2, the breast cancer gene, and also identified the first possible site for a hereditary testicular cancer gene three years ago. He recognises the value of genetic information, and the potential difference it can make to families such as the Youngs. "The discovery of cancer genes can have a major impact on people's lives. One woman who was due to have a double mastectomy because she had a very high chance of developing breast cancer was able to cancel the operation when BRCA2 was discovered because it was possible to test her for abnormalities in the gene and it was found that she was not a carrier."

Given that Steve's two brothers have also been diagnosed, genetic links seem obvious. "I think people feel they know about testicular cancer in general - even though education isn't ideal. They think it's survivable - which it is. But there is little awareness about the lifelong implications even if you do get the all-clear. The effect on my life has been devastating. I wasn't really prepared for the side effects of treatment. The tiredness was all-consuming, and I felt sick constantly. From the start, and to this day, I developed tremendous stomach problems - it's like I'm on fire."

In addition to the effects of his surgery and radiotherapy, Steve also developed severe pain just over a year ago. "This time, I knew I had to act more quickly. A scan showed the development of pre-cancerous cells, but I was sent away for six months until my next check-up. I was suffering enormous discomfort and asked for another ultrasound. The problem was still there, and the best option seemed to have my other testicle removed."

But the side effects Steve had suffered were to be compounded by further surgery. "No-oneexplained that all my testosterone would simply go. I thought I could just keep on with my life, keep working, and keep my hobbies going. Instead, I have three or four hormone implants four times a year. In addition, I need hormone injections to top me up every few weeks because my body is burning them up so quickly. We joke that I wake up feeling like a hormonal 16-year-old, and go to bed like an old man - but it's not a laughing matter. Some days I'm completely exhausted just walking from one room to another. I've had to give up my job, deal with suicidal feelings and depression, and pretty much take each day as it comes. In theory, I'm fine - but in practice, my life has changed beyond recognition."

Men who come forward for testicular cancer gene research will be sent a preliminary questionnaire, and blood samples will be taken if appropriate. Many who have the disease remain unaware of the hereditary nature of both testicular and prostate cancers. Coupled with the taboo which still exists, there may be reticence about telling other family members.

It's a problem recognised by researchers. "While we respect that men might not want to talk, knowledge can be power," says Clare Moynihan, a medical sociologist at the ICR. "It is so important they are aware these diseases can be hereditary. If they did know, they might want to talk about it in order to make their relations aware they could be at risk. And they might want to help in the search for cancer genes."

"I think the attitude to testicular cancer in this country is appalling," says Steve. "I've had people too embarrassed to talk to me. Others think it can be passed on like sexually transmitted disease. But lots of men just don't know what to do - until it happens to them." His wife agrees. "We've made great strides forward with breast cancer awareness, but the attitudes in this area put us all to shame. And it's the next generation of young men who will pay the price unless we address it now - both in research and in attitudes."

Steve and Elizabeth Young now campaign for greater awareness of testicular cancer. As parents of two sons, the implications of genetic links are uppermost in their minds. "We don't want to scare them because their dad had testicular cancer," says Elizabeth. "But as this disease has a cure rate of over 90 per cent, we want them to be aware. Women are taught to check their breasts monthly. We must get men - especially young men - to check themselves too. Our boys will be screened regularly once they're 18. The difficult thing is just having to wait and see. Hopefully, more research will take some of that fear away."

The Institute of Cancer Research wishes to recruitfamilies with two or more cases of testicular cancer to help with research. Contact the study coordinator, Lola Johnson, on 020-8722 4053

What are the signs and symptoms to look out for?

* Testicular cancer, though the commonest cancer in young men, is rare, affecting about one in 500 men between the ages of 15 and 50.

* The cure rate is 95 per cent, and higher than that if the cancer is caught early.

* The most common sign of testicular cancer is a lump or swelling in one of the testicles. Men should check their testicles regularly, looking for changes in consistency and areas of hardening and swelling, which are usually painless.

* Any concerns should be reported to your doctor immediately. However, note that most lumps found in the testicles turn out to be benign.

* If you are concerned that you may have testicular cancer, also watch out for these symptoms:

* A dull ache, either in the testicle or in the lower abdomen;

* Hardening of testicle;

* Feeling of heaviness in the scrotum;

* Backache or stomach ache;

* Coughing, difficulty in breathing or swallowing, or a swelling in the chest

* Some men also develop night sweats, lose their appetite, lose weight or feel tenderness in their breast area.

Tania Valdemoro