Women at high risk of breast cancer are having a pre-emptive mastectomy instead of waiting up to two years for test results which would reveal whether they carried the breast cancer gene.
A report from the charity Breakthrough Breast Cancer warned that in some parts of the UK women with a strong family history of the disease were needlessly choosing to have their breasts removed rather than waiting long periods to discover if they carried the faulty gene.
The government's 2003 genetics white paper had promised that by 2006 anyone taking a genetic test should receive their results within eight weeks for diagnostic testing and two weeks for predictive testing. But the report says women who had tests in 2002 are still waiting for results.
Despite millions of pounds going towards funding for genetic testing, waiting times have risen because the NHS has not been able to cope with demand, estimated to be 5,000 tests a year.
Oonagh Wilson, 39, who lost her mother and grandmother to breast cancer, had a double mastectomy because she could wait no longer for results. The mother of two, from Elgin in Moray, had tests carried out in 2002, but decided to undergo preventative surgery - a mastectomy and a hysterectomy - in 2003. More than three years later, she is still awaiting the results of one of the tests which will establish if her mother had a faulty gene.
"When I went to the geneticist I was told the test results would take about two years but I chose not to wait," she said. "I think it is absolutely horrendous to have a three-year wait - these are life-threatening and life-changing results."
Jeremy Hughes, the chief executive of Breakthrough Breast Cancer, said it was unacceptable that women were forced to put their lives on hold while they had long waits to get results. "The decision to take such a test is extremely personal, complex and difficult enough. That some then feel compelled to make crucial healthcare decisions out of fear of developing breast cancer while waiting for their test results is appalling."
