Galway PhD student offers expertise to those carrying mutant BRCA cancer gene

Niki Warner, originally from Roscommon but a long-time Galway resident who is undertaking her doctorate at NUIG, was announced as the latest peer-to-peer supporter – helping others who carry the same gene – at the sixth Marie Keating Foundation BRCA conference last week.

Those discovered to carry the BRCA1 or BRCA2 mutation have a much higher risk of developing breast cancer or ovarian cancer compared with someone who doesn't have the mutation – although carrying it doesn’t mean you're certain to develop cancer.

Niki, who has a BRCA gene alteration, says that her BRCA story began 14 years ago, and – as she says – it won’t end any time soon.

But she says: “I take pride in my research and knowing that I am available through the Marie Keating to young women going through a BRCA 1/2 mutation diagnosis, or to any parent/family members that are worried about how a BRCA mutation may affect their younger relatives.”

“I have a vague memory of my mother mentioning that she carried a genetic mutation that had something to do with her predisposition to cancer,” she says.

“It never fully registered, given the emotionality around her terminal illness, that it might ever be something I had to think about. However, my father encouraged me to consider genetic testing.

“When I looked into it, I didn’t have to think twice and went for the blood test in 2017 in St. James’ Hospital. A few months later I found out that I carried a BRCA 1 mutation, the same as my mother,” she adds.

Despite that, she says that in some regard, she is very early on into her BRCA mutation ‘journey’. “I am currently in the second year of my PhD in the School of Psychology in NUI Galway, researching the psychological aspects of being diagnosed as a BRCA 1/2 mutation carrier in Ireland,” she explains.

“I am well aware that down the line, I will have to undergo prophylactic surgeries and the physical and emotional difficulties around these.

“However, for now, I am grateful for my position of being informed, from my mother, my research and from the support I have received from the Marie Keating Foundation. This in itself was my motive for becoming a peer support volunteer.

“Given my slightly odd dynamic in my family with regard to BRCA – I am the only known carrier – at times it can be hard to find someone to relate (or vent) to, and as such I am indebted to the six amazing women on the Marie Keating Peer to Peer support team,” she adds.

More than 120 men and women affected by the BRCA1 or BRCA2 gene attended the sixth annual Marie Keating Foundation BRCA conference in Dublin last Friday, at a time of uncertainty with delays in accessing genetic testing and reconstructive surgery reported.

That’s down to the impact of the COVID-19 pandemic – on top of many years of under-funding – to leave long waiting times for essential services such as genetic testing, reconstructive surgery and cancer surveillance services, all of which are becoming a regular occurrence in the public system, with some people waiting between two to four years for an initial referral.

“Testing positive for a BRCA gene alteration not only impacts those tested, but also their families and wider circle,” the Foundation’s Director of Nursing Services Helen Forristal told the conference.

“As a genetically inherited alteration, passed down through family lines, a BRCA gene significantly increases a person’s risk of developing cancer in their lifetime.

“To have this information, and then to be told you could be waiting up to and beyond two years to be seen or even tested for the alteration leads to undue anxiety, emotional distress and uncertainty for this already vulnerable community,” she added.

Niki Warner herself admits that there is often a debate about when is the best time for someone to get tested for a BRCA 1/2 mutation.

“I, myself, at no point have regretted my decision to go for the test,” she says.

“I feel in a place of great privilege, whereby I have firstly my mother to thank, for getting the wheel rolling on finding out about the hereditary risk in our family.

“She was honest, told me the truth, and asserted no pressure over me to get tested, allowing me the space to process the information.

“Later on, my father supported me greatly in my choice to get the test, accompanying me to the appointments and letting me rant and rave as needed throughout.

“I don’t think any parent could do anything more than to allow their children the opportunity and support in making their own, well-informed decisions regarding their options,” she added.

Due to demand for support and information created after their 2020 BRCA Conference, the Marie Keating Foundation created their first online support group for those affected by a BRCA gene alteration.

Available free of charge to members across Ireland, this community beginning with just nine members has grown by more than 700% in the last two years.

The Marie Keating Foundation itself was set up 24 years ago, following Marie’s death from breast cancer in 1998.

After losing their mother, the Keating family promised that they would do everything they could to ensure men and women in every community in Ireland had access to the necessary information to prevent cancer or detect it at its earliest stages.

The Marie Keating Foundation supports families across Ireland at every step of their cancer journey.

(Photo: Dr Eithne Lowe, Consultant in Reproductive Medicine (centre) is pictured with women affected by the BRCA gene alteration, Jean O’Neill from Kilkenny (left) and Niki Warner from Galway at the Marie Keating Foundation sixth annual BRCA Conference).