A woman whose grandmother and aunt died of ovarian cancer as a result of the faulty BRCA1 gene faces an 18-month wait for a test to determine if she has inherited the gene.
She is one of 56 patients in Cork where the waiting time is a year-and-a-half to be seen at the monthly Cork cancer genetic clinic.
The woman, who wrote to her local politician, Sinn Féin councillor Henry Cremin, asking him to highlight her case, said her family has only recently found out that her grandmother and aunt, who died at ages 60 and 35, had the faulty gene.
“Once you find this out, the next step is to test for the gene in the female members of the family, then the male members. We have 12 females and 13 males that need testing,” the woman wrote.
Among these are six women in their 30s who “are under serious time pressure to make decisions about family planning as a result of having this gene”.
“Time really is of the utmost importance here and we really don’t have a year- and-a-half to wait for a simple test,” she said.
When Mr Cremin raised the issue at yesterday’s HSE regional health forum in Cork, he was told there are 220 patients nationally waiting for predictive cancer testing at Our Lady’s Children’s Hospital in Crumlin, the majority of whom are for BRCA1 Or BRCA2.
There is a similar number waiting for testing at St James’s which also runs a cancer genetics clinic. In a written response, Professor Andrew Green, consultant in clinical genetics at Crumlin, said the figure of 220 people waiting at the hospital does not include those given appointments in the next six weeks.
Crumlin runs the monthly outreach genetics clinic in Cork. Prof Green said patients attending the Cork clinic are waiting 18 months, compared to about 11 months in Dublin and Galway. He said some Cork patients have been offered faster appointments in Dublin.
Head of research at the Irish Cancer Society, Robert O’Connor, said that the experience of patients in Cork is “unfortunately nothing unusual” as public patients face long waits nationally.
This is against a backdrop of a real need for people to know if they have the gene in order to make potentially life-changing decisions such as whether to have a mastectomy or hysterectomy, neither of which eliminates the risk of breast or ovarian cancer.
The risk of breast cancer to someone who tests positive for the gene increases from 5% to 85%. In 2013 Hollywood actress Angelina Jolie opted for a double mastectomy after testing positive for the faulty gene.
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