People at higher risk of cancer due to family history waiting over a year for tests, shows report by UCC researchers

People at a higher risk of cancer due to their family history are having to wait over a year for tests due to “overstretched” services, a new report by health researchers at University College Cork (UCC) has found.

The new report, prepared for the Irish Cancer Society, found that many patients and healthcare professionals believe cancer genetic services in Ireland are under-resourced, with some people waiting over two years for testing and counselling.

A survey of 154 people with experience or knowledge of the process found high levels of worry and anxiety among people waiting long periods for test results.

It found that one in seven people are waiting over a year for tests with some waiting more than two years, with further waits of up to another two years for risk-reducing procedures.

A third of those surveyed said such waiting times can put people off accessing these crucial services.

Over four in 10 had concerns over how their genetic information would be used after testing, including worries over whether it could be used against them by employers or insurers.

Cork patient's experience

Commenting on similarities between her own experience with cancer genetic services and the report findings, Cork-based breast cancer patient Margaret Cuddigan said: “Genetic testing was not available to me at diagnosis.

“In those 13 months waiting for a result, I went through chemotherapy, a lumpectomy and radiotherapy on my breast, only for a double mastectomy to be required once the BRCA mutation was known. Had I known this earlier, my course of treatment could have been very different.

“I had to postpone a radiation treatment to go up to Dublin from Cork to do the genetic test, as it would have taken up to another 12 months in Cork, and then I waited over four months for the results. Once I received the news of the gene mutation, I had to navigate a path of risk-reducing surgeries. I researched and sought out a surgeon myself.

“There were no cross-discipline genetic service available to me to support this journey. I strongly feel there should be an urgency to improve these services.” 

Government urged to provide more resources 

Irish Cancer Society Director of Advocacy Rachel Morrogh said that the experiences of people like Ms Cuddigan show that “much more needs to be done to support cancer genetic services which are the first step in empowering people to reduce their chance of receiving a life-changing cancer diagnosis, or identify the disease early and benefit from more targeted treatments”.

She said that patients need a dedicated group of multi-disciplinary doctors following them so that they can be offered options and psycho-oncology support when they need it and called on the Government to listen to patients and those working in hospitals and “provide more resourcing and staffing”.