A 36-year old, Scot woman, Oonagh Wilson, elected to undergo hysterectomy and mastectomy. due to a 4-year delay in finding out the degree of susceptibility her family harbors to develop breast cancer . Oonagh's decision came after being told that she would have wait for at least two more years for the results of the genetic tests.
Lack of funding and trained professionals, changes in service delivery and delays in getting licenses from genetics watchdogs to perform the tests are the main reasons for the backlog of people waiting for results.
Politicians described the situation as "inhuman" and "shocking".
Mrs. Wilson said that she was left in the limbo, not knowing if her two children and other members of her family were carrying a cancer "time bomb". Her mother died of breast cancer in 2002. Her grandmother also died from the same disease while two of her aunts have also been diagnosed and have been treated.
Some women felt forced to remove their breasts prior to getting the results of tests because they were extremely worried and could not wait longer, the charity 'Breakthrough Breast Cancer' warned. Others preferred to go private to get the test results quickly, and this would cost them up to £1,800.
No figures could be provided on the number of women waiting to find out the results of the genetic tests, but approximately 450 such tests for breast cancer genes are carried out by Scottish doctors every year. Campaigners have asked that a time target be set by the end of 2006, for the genetic test results, with a maximum of up to eight weeks
Oonagh's mother's blood was submitted for genetic tests, at the end of 2002, to look for the presence of breast cancer genes, BRCA1 and BRCA2. Tests have to be carried out on an affected relative before testing can be carried out on healthy relatives.
But when Mrs Wilson was told to wait for another two years she made up her mind to have a hysterectomy and double mastectomy, to reduce her own risks.
After the operation, the family received a result for BRCA1 testing negative, and are still waiting for the BRCA2 results. Mrs. Wilson said she feared that this test would also be negative, leaving her family in the dark on the gene which was behind the large number of cancers in the family.
"I have an 11-year-old daughter and a 14-year-old son. If it takes this long to get one result, how long is it going to take to get another one, and another one?" "It is incredibly frustrating and horrendous to be waiting this long," Mrs Wilson said. She said she would let her daughter make up her own mind as whether to have the preventative surgery or not.
Other family members of Oonagh are waiting for the results before deciding on the course of action.
A woman, who carries a mutation in the BRCA1 or BRCA2 genes, faces a lifetime risk of up to 85 per cent, of developing breast cancer, and up to 40 per cent for ovarian cancer.
A NHS Grampian spokesman said: "There are only two labs in Scotland that do the tests, one in Aberdeen and Glasgow. The service did receive funding from the Executive 18 months ago, so we are making in-roads into the waiting list."
The Executive has been trying hard to bring down the waiting time. But Andy Kerr, the health minister, announced last month: "NHS Scotland is continuing to deliver. This is our best ever performance on waiting times, something for which hard-working NHS staff deserve enormous credit." but conceded that "cancer waiting times performance across the NHS isn't good enough".
The charity, Breakthrough ,opined that NHS labs and ministers needed to discuss the matter with each other. Richard Loch head, the Moray MSP, is now putting forth a series of parliamentary questions on the topic.
He said: "Scottish ministers must give this issue their urgent attention to ensure that patients do not have to wait so long for the results of these vital and potentially life-saving tests."
The chief executive of Breakthrough Breast Cancer, Jeremy Hughes 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, that some feel compelled to make crucial healthcare decisions out of fear of developing breast cancer, while waiting for their test results is appalling."
The Liberal Democrat health spokesman, Steve Webb, said at Westminster, said: "These are shocking statistics. Women have to wait an inhuman amount of time for the results. The drastic measures some women are taking show the extent of distress, which is being caused. It seems illogical that it should take so much time to get the results from tests."
"While I can understand the concern women have with the inadequacies of the current set-up, this is a drastic step and not one to be undertaken lightly," said. Dr Nanette Milne, the Scottish Conservatives' health spokeswoman.
An Executive spokeswoman said a report has been submitted its expert group on genetic services and it was now under the consideration of the ministers.
"There is no doubt that waiting for test results can be a worrying time. It is, however, recognized that testing these large cancer-susceptible genes can often be a complex process that can take a long time in a few cases," the spokeswoman said.
For a woman with a family history of cancer, genetic testing provides her with an option of a preventive surgery to minimize her chances of developing the disease in the future. Before genetic testing is started, women are counseled, explaining what the results indicate and what their options are.