Women are having their breasts removed rather than waiting years to get genetic screening results, a leading cancer charity has warned.
Breakthrough Breast Cancer said that women were suffering delays of two years or more for test results to see if they carry a faulty breast cancer gene.
A study carried out by the charity found that 55 per cent of breast cancer screening counselors had patients who had opted to have their breasts removed while waiting for their own result or that of an affected relative.
Jeremy Hughes, chief executive of Breakthrough Breast Cancer, said is was unacceptable that women were being forced to put their lives on hold as they wait for the test results.
“The decision to take such a test is extremely personal, complex and difficult enough,” he said.
“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.”
The charity compiled its report after speaking to 27 genetic screening counsellors and more than 50 women with a personal experience of waiting for a genetic test.
Over half (59 per cent) of the generic screening counsellors had patients who decided to go private because they had waited so long for results.
Over two-thirds (70 per cent) of patients waiting for a result said the wait made them worry about their own health or the health of their relatives.
The majority of women surveyed (70 per cent) and over half of genetic counsellors said the current situation was unacceptable.
In some cases, women who had tests in 2002 were still waiting for their results, while there were wide variations between laboratories, the report said.
Around five per cent of the 41,000 cases of breast cancer diagnosed in Britain each year are due to inherited faults in genes associated with a strong family history of the disease.
The majority of breast cancer genetic testing looks for changes or faults in the genes BRCA1 and BRCA2.
A woman who carries a fault in one of her BRCA genes has a lifetime risk of developing breast cancer of up to 85 per cent, and up to 40 per cent for ovarian cancer.
The test involves a two-step process, with a living relative with breast cancer tested first (diagnostic testing), followed by healthy relatives to see if they have inherited the genetic fault (predictive testing).
The Government’s 2003 genetics White Paper 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.
A spokesman for the Department of Health acknowledged that long waits for results could cause distress to patients, but said the Government was making progress.
“The White Paper announced substantial new money – up to £18m capital plus some revenue funding – to boost capacity and help with modernisation in NHS genetic laboratories,” she said.
“This money was allocated during the last two financial years, and laboratories are now working very hard to get their new equipment and working practices up to speed in order to meet these standards.
“They are making excellent progress towards this important goal.”
