Charity warns waits for genetic tests for breast cancer are still too long

Women ‘waiting two years’ for NHS breast cancer tests

Women ‘waiting two years’ for NHS breast cancer tests

Women are waiting two years or more on the NHS to find out if they have a genetic predisposition to breast cancer, a charity claims today.

This is despite the government’s target to ensure anyone taking a genetic test on the health service will receive their results within eight weeks, and has led some women to go ahead and have a mastectomy as a precaution, without knowing if it is even necessary.

Breakthrough Breast Cancer says this situation is unacceptable and has called on the government to step up its efforts.

However, a spokeswoman for the Department of Health (DoH) insisted “excellent progress” was being made towards the goal of getting test results back within eight weeks, or two where a family member has already tested positive.

About 41,000 women and 300 men are diagnosed with breast cancer every year, and in five per cent of cases the disease is caused by a hereditary mutation in the BRCA1 and BRCA2 breast cancer genes.

These 2,000 people a year have a lifetime risk of developing breast cancer of up to 85 per cent, and many choose to have preventative surgery before it develops.

But today’s report warns that it is still taking too long for women to know whether they have this faulty gene, saying their lives are on hold until the result comes through, and some women feel compelled to go ahead with surgery anyway, to be on the safe side.

The charity claims the average waiting time for a genetic test has not improved in since 2003, and a survey of genetic councillors revealed 21 per cent had patients who waited more than three years for their test results.

More than half (55 per cent) said they had patients who had decided to have a mastectomy before receiving their results, while 59 per cent said some of their patients decided to seek private treatment and pay the £1,800 to get their result in three weeks.

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

“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.”

The DoH spokeswoman said: “We understand the anxiety associated with long waits for the results of genetic tests. Clearly long waits are unacceptable.”

That was why the government had set out new standards in the genetics white paper three years ago, and provided £18 million capital and £3.5 million for new laboratory staff to improve genetic testing on the NHS, 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,” she added.