Two year wait for breast cancer test results drives women to consider radical surgery

Jun 20 2006

Women in the UK being put under added stress because they are experiencing delays of two years or more for test results to see if they carry a gene associated with an increased likelihood of breast cancer.

According to a report by the charity Breakthrough Breast Cancer, the situation is so desperate that in some cases women are contemplating surgery to have their breasts removed rather than suffer the frustrating long wait for results.

Women with a strong family history of breast cancer are choosing to have their breasts surgically removed rather risk waiting for long periods for the results and where they can are paying privately in order to get the results sooner.

The charity says some women who had tests in 2002 were still waiting, and there were wide variations between laboratories.

The charity while admitting that the tests can take a few weeks says the process is causing unnecessary anguish.

According to the Government's 2003 genetics White Paper, by 2006 anyone taking a genetic test was promised results within eight weeks for diagnostic testing and two weeks for predictive testing and the government maintains that laboratories are "making excellent progress" in meeting that goal.

Research has shown that 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 woman who has a fault in one of her BRCA genes has an 85% lifetime risk of developing breast cancer and a 40% risk for ovarian cancer.

Ten 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.

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's report follows interviews with more than 50 women with a personal experience of waiting for a genetic test, and 27 genetic counsellors.

The report says that 55% of counsellors had patients who had opted to have their breasts removed while waiting for their own result or that of an affected relative and as many as 59% had patients had ended up paying private health facilities because they had waited so long.

Seventy per cent of patients waiting for a result said the wait had caused anxiety and concern about their own health or the health of their relatives.

The majority of the women and over half of the genetic counsellors view the current situation as unacceptable.

Breakthrough Breast Cancer says women are forced to put their lives on hold when they wait so long for such vital test results.

The decision to take such a test is extremely personal, complex and difficult, says the charity, and some women feel compelled to consider radical and crucial healthcare decisions out of fear of developing breast cancer while waiting for their test results, which is 'appalling'.

The researchers involved in discovering the BRCA2 gene, say that genetic testing has a big role to play in the future in predicting and preventing disease, but robust systems must be in place to guarantee people get their genetic test results back in good time.

The Department of Health says up to £18m has been invested since 2003 to help modernise NHS genetic laboratories.