Friday 30 September 2016

Long waits for women who fear 'Angelina' cancer gene

Published 12/09/2015 | 02:30

Jolie has the BRCA1 and BRCA2 genes, pushing up the odds of getting cancer
Jolie has the BRCA1 and BRCA2 genes, pushing up the odds of getting cancer

People who may be more prone to cancer because of their family history are suffering long delays for gene tests - months after the publicity around actress Angelina Jolie's decision to have her ovaries and breasts removed.

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Jolie has the BRCA1 and BRCA2 genes, pushing up the odds of getting cancer.

She took the dramatic step of having a double mastectomy in 2013 and removing her ovaries and fallopian tube earlier this year.

However, Irish people who want to find out if they have faulty genes which run in their family can wait three months to a year or more for an appointment for tests and counselling at the National Centre for Medical Genetics at Crumlin Hospital in Dublin. And it will take another two months to get result.

Patients already fighting cancer who want to find out if it is genetic can endure an even longer wait, as the tests must be sent abroad for analysis.

A spokewoman said all of the laboratories used abroad are accredited.

Since 2013, the Crumlin centre has seen a 14pc average increase in demand for cancer genetic testing, she added.

Dr Jerome Coffey, the interim head of National Cancer Control Programme in the HSE, acknowledged the difficulties encountered by these patients.

He said he has now appointed a senior medical oncologist, David Gallagher, to oversee the improvement of hospital clinics for people with inherited genes.

"Dr Gallagher will lead the development of a national genetics service. The service has been available but it needs to be better structured," he told the Irish Independent.

An expert group is also to make recommendations to improve the laboratory testing service at the Crumlin centre, he added.

Cancer is not usually inherited, but some types - mainly breast, ovarian, colorectal and prostate - can be strongly influenced by genes.

The National Cancer Control Programme states that there is no comprehensive national policy on genetic testing in Ireland.

Currently, there are two hereditary cancer clinics in Dublin's St James's and Mater hospitals, which are also under pressure.

The Crumlin centre now has around 1,200 patients referred for cancer gene tests annually - up from 600-700 in the early 2000s.

Surgery

Women with the faulty genes who remove their breasts reduce the risk of developing breast cancer by around 90pc. However, it is major surgery and recovering from it can be physically and emotionally difficult. Most women in this country opt for monitoring.

Younger women who have their ovaries removed trigger the menopause.

A spokeswoman for Europa Donna Ireland, the breast cancer patient advocacy group, said it was concerned at delays.

She revealed that young women who are diagnosed with breast cancer are more inclined to look for a test to find out if they have inherited faulty genes, often to try to ease the concerns of relatives worried that they are also at risk.

One problem faced by patients is the cost if they want it carried out privately. The tests cost in region of €1,400 and are not covered by private health insurance. Hiqa has asked that a programme of monitoring be set up.

Irish Independent

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