MORE than 20 years ago, Wendy Watson faced a lonely battle.
Convinced breast cancer could be a hereditary disease in the face of scepticism from doctors, she underwent the country’s first preventative double mastectomy to eradicate risk of the disease that stalked her family.
In the years since then, women have been offered a stark choice if medics discover they are genetically predisposed to breast cancer - wait and see if the illness develops, or go under the knife to be sure they are never a victim.
However, last week the drugs watchdog in England and Wales, the National Institute for Health and Clinical Excellence, published draft recommendations saying women should be given the option of taking Tamoxifen or another medication called Raloxifene for five years to cut their lifetime risk of cancer.
Wendy, aged 57, sat on the NICE committee which drew up the guidelines - but said she would still choose surgery if she were faced with the same predicament today.
“I’m delighted about anything that gives more options for people that are at a high risk of developing breast cancer, however this drug is not a cure-all,” she said.
“It reduces the risk by 50 per cent, and there are certain cancers that are associated with these genes that Tamoxifen will not affect at all. I would say proceed with caution - anything that gives someone more chance of not developing cancer is a good thing, but it won’t be for everybody - that’s something to bear in mind.”
Wendy was nine when she watched her mother nurse her dying grandmother, then eight years later her own mum - a teacher - died herself aged only 45. She became paranoid about her own breasts, refusing to check them in case she found a lump, and her sense of dread deepened when daughter Becky was born in 1981.
In 1990, Wendy had a chance meeting with a cousin Jennifer Caudwell who explained she had suffered two bouts of breast cancer in her early 30s, and that other female relatives fell victim to the same disease.
Wendy then plotted a family tree showing nine of the 10 females in three generations of her family had contracted breast cancer, and showed it to her GP.
“I wasn’t given any options at all,” she said. “All GPs thought cancer was not inherited. I was way ahead of the time with it all.
“My family was one of the families that helped find the gene, I literally invented having the surgery for myself. I had to battle my way through it all. All I was told was that the doctor would check frequently for cancer, and then when they found it they would begin treatment. Every time I spoke to my GP about it, they said there was no such thing.”
Wendy was eventually referred to the Nightingale Centre in Manchester, which was looking at genetic links in cancer, and had the operation in April 1993.
“For me it was not a drama. I know to other people that it might be, but for me, definitely not,” said Wendy, of Over Haddon, near Bakewell.
“If I was making the decision today, I would choose the same route I chose 21 years ago. I would still choose surgery. I want something a bit more sure-fire, a bit more certain.”
In 1996 Wendy founded the National Hereditary Breast Cancer Helpline, which runs 24 hours a day and has received more than 85,000 since it was set up.
Ten years later, her daughter Becky had both breasts removed, as she was found to have the faulty gene which causes cancer. Around one per cent of women over 30 are deemed to be at high risk, and could be offered Tamoxifen or a similar drug, Raloxifen, for five years to combat cancer.
“For some, the surgical route is just not an option,” said Wendy, who was made an MBE in the New Year’s Honours list.
“I want to make sure there are options for everybody. I would say, discuss it with your doctor as to what is most appropriate for you.
“I would advise everybody to look into the limitations of any treatment. You need to do your homework, ask all the questions, and choose what is right for you. I’m not criticising the drug, it’s just not for everybody.
“The side effects of this particular drug make it really unsuitable for a young person, they can be fairly unpleasant.”
Visit www.breastcancergenetics.co.uk, or call the Hereditary Breast Cancer Helpline on 01629 813000.