Left waiting over a year for vital cancer gene test
PEOPLE at a higher risk of getting cancer are having to wait over a year for genetic tests due to services being ‘overstretched’, a report has found.
Inherited faulty genes play a major role in 5% to 10% of all cancers, according to the Irish Cancer Society.
A survey conducted by the ICS involving 154 people found that one in seven respondents was waiting between 13 and 24 months for their genetic testing appointment.
A third of those surveyed said such waiting times can put people off accessing these services.
Speaking on her own experience with cancer genetic services, breast cancer patient Margaret Cuddigan said it was not available to her 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,’ she said.
‘Had I known this earlier, my course of treatment could have been very different.’
Ms Cuddigan said that she had to do the genetic test in Dublin as it would have taken up to another 12 months in Cork. ‘Then I waited over four months for the results,’ she said.
‘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 was no cross-discipline genetic service available to me to support this journey. I strongly feel there should be an urgency to improve these services.’
The report was prepared for the ICS by health researchers at University College Cork. It found that many patients and healthcare professionals believe cancer genetic services in Ireland are under-resourced.
A separate survey of 52 healthcare professionals working in cancer genetic services showed six in ten said it was underresourced and four in ten expressed concerns about access to follow-up surgery for patients deemed high risk.
The director of advocacy with the ICS, Rachel Morrogh said the experiences of patients such as Ms Cuddigan show that much more needs to be done.
‘There needs to be significant investment and the expansion of capacity across all the followon services that someone with a genetic risk of cancer may need, focusing on the development of a dedicated and resourced pathway for them,’ she said.
Josephine Hegarty, professor at UCC’s School of Nursing and Midwifery and lead author of the report, said the public cancer genetic services are ‘overstretched’ and ‘waiting lists exist on every point of the pathway’ for people who need them.
‘Many patients spoken to seemed to abandon the waiting for overstretched public services in favour of paying for private testing and treatment,’ said Prof. Hegarty.
The report gives several recommendations, including formally integrating genetics into the cancer treatment pathway with access to genetic testing, building and further developing the genetics workforce and capability, as well as streamlining the genetics pathway to ensure follow-up counselling and health-promoting interventions for individuals.
‘Significant investment’