Women are suffering delays of two years or more for test results to see if they carry a gene associated with an increased likelihood of breast cancer, a charity warned today.

In some parts of the UK, women with a strong family history of breast cancer are choosing to have their breasts surgically removed rather than wait long periods for the results, according to Breakthrough Breast Cancer.

Some women pay for private health care to get the results more quickly, but many are forced to wait for months between having the test and finding out if they are at risk.

In some cases, women who had tests in 2002 were still waiting, while there were wide variations between laboratories, said the report.

The charity admitted that the tests can take a few weeks but said the process is causing unnecessary anguish.

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.

Today, the Government said laboratories were "making excellent progress" towards meeting the goal.

Around 2,000 cases of breast cancer - 5 per cent of the 41,000 cases diagnosed in the UK each year - result from the inherited form of the disease, carried on mutations to genes named BRCA1 and BRCA2.

A further 10 to 15 per cent of all breast cancer cases (4,000 to 6,000) occur in women who have a moderate family history of the disease.

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 charity said it compiled its report after speaking to more than 50 women with a personal experience of waiting for a genetic test, and 27 genetic counsellors.

It found that 55 per cent of counsellors had patients who had opted to have their breasts removed while waiting for their own result or that of an affected relative. Over half (59 per cent) had patients who decided to go private because they had waited so long.

Meanwhile over two-thirds (70 per cent) of patients waiting for a result said that the wait made them worry about their own health or the health of their relatives. The same proportion of women and over half of genetic counsellors said that the current situation was unacceptable.

Jeremy Hughes, chief executive of Breakthrough Breast Cancer, said: "It’s unacceptable that women are forced to put their lives on hold as they wait so long to get these vital test 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."

Professor Alan Ashworth, director of the Breakthrough Toby Robins Breast Cancer Research Centre, who was involved in discovering the BRCA2 gene, said that genetic testing had a big role to play in the future in predicting and preventing disease - but only if the system of obtaining results worked properly.

"If patients are to benefit from future treatments targeted at specific genetic make-up we need robust systems in place that guarantee people get their genetic test results back in good time," he said.

A spokeswoman for the Department of Health said: "We know long waits for the results of genetic tests can cause distress to patients. Because of this, the Government set out standards in the genetics White Paper that by 2006 results would be available by eight weeks or two weeks.

"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. 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."

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