A Galway PhD student whose mother died of cancer has discovered that she herself carries the same mutant BRCA gene – and she has now turned her own experience and expertise into her life’s work.
Niki Warner, from Roscommon but a long-time resident of Galway who is undertaking her PhD at NUIG, has been announced as the latest peer-to-peer supporter – helping other carriers of the same gene – at the Marie Keating Foundation’s sixth BRCA conference last week.
People found to have the BRCA1 or BRCA2 mutation have a much higher risk of developing breast cancer or ovarian cancer compared to someone who does not have the mutation – although carrying it does not mean that you are certain to develop cancer.
Niki, who has an altered BRCA gene, says her BRCA story began 14 years ago and, as she says, it won’t end anytime soon.
But she says: ‘I take pride in my research and know that I am available through the Marie Keating for young women who are diagnosed with a BRCA 1/2 mutation, or any parent/family member who is concerned. how a BRCA mutation can affect their young parents.
“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 his terminal illness, that it might be something I needed 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 took the blood test in 2017 at St. James’s Hospital. A few months later, I found out that I I had a BRCA 1 mutation, the same as my mother,” she adds.
Despite this, she says that in some ways she is very early in her BRCA mutation “journey”. “I am currently in my second year of PhD at the School of Psychology at NUI Galway, researching the psychological aspects of carrier diagnosis of the BRCA 1/2 mutation in Ireland,” she explains.
“I am well aware that ultimately I will have to undergo prophylactic surgeries and the physical and emotional hardships that surround them.
“However, for now, I am grateful for my position to be informed, for my mother, for my research and for the support I received from the Marie Keating Foundation. That in itself was my motivation to become a peer support volunteer.
“Given my somewhat odd dynamic in my family when it comes to BRCA – I am the only known carrier – it can sometimes be difficult to find someone to relate to (or vent to), and as such , I am indebted to the six amazing women on Marie Keating’s Peer to Peer Support Team,” she adds.
More than 120 men and women affected by the BRCA1 or BRCA2 gene attended the Marie Keating Foundation’s sixth annual BRCA conference in Dublin last Friday, at a time of uncertainty with delays in access to genetic testing and reconstructive surgery reported.
It is because of the impact of the COVID-19 pandemic – in addition to many years of underfunding – to leave long wait times for essential services such as genetic testing, reconstructive surgery and cancer surveillance services, all of which are becoming regular events. in the public system, some people wait two to four years for a first referral.
“Testing positive for an altered BRCA gene impacts not only those tested, but also their families and their wider circle,” said Helen Forristal, the Foundation’s director of nursing services, at the conference.
“As an inherited alteration, passed down through family lines, a BRCA gene significantly increases the risk of developing cancer during one’s lifetime.
“Having this information and then being told that you could wait up to two years and more to be seen or even tested for the alteration leads to undue anxiety, emotional distress and uncertainty for this already vulnerable community,” said she added.
Niki Warner herself admits that there is often debate about when is the best time for someone to get tested for a BRCA 1/2 mutation.
“I myself, at no time did I regret my decision to take the test,” she says.
“I feel in a place of great privilege, where I must first thank my mother, for having set the wheel in motion to discover the hereditary risk in our family.
“She was honest, told me the truth and put no pressure on me to get tested, which gave me space to process the information.
“Later, my father was very supportive of me in my choice to take the test, accompanying me to appointments and letting me fume and rave as needed throughout.
“I don’t think a parent can do anything other than give their children the opportunity and the support to make their own informed decisions about their options,” she added.
Due to the demand for support and information created after their BRCA 2020 conference, the Marie Keating Foundation has created its first online support group for those affected by an altered BRCA gene.
Available free to members across Ireland, this community starting with just nine members has grown by over 700% in the past two years.
The Marie Keating Foundation itself was established 24 years ago, following Marie’s death from breast cancer in 1998.
After losing their mother, the Keating family promised they would do all they could to ensure that men and women in all communities in Ireland had access to the information needed to prevent cancer or detect it in its early stages.
The Marie Keating Foundation supports families across Ireland at every stage of their cancer journey.
(Pictured: Reproductive medicine consultant Dr Eithne Lowe (centre) is pictured with women affected by the BRCA gene alteration, Jean O’Neill from Kilkenny (left) and Niki Warner from Galway at the sixth conference Marie Keating Foundation Annual Report on the BRCA).