Connacht Tribune
Galway PhD student offers expertise to those carrying mutant BRCA cancer gene
A Galway PhD student whose mother died from cancer discovered she was carrying the same mutant BRCA gene herself – and she has now turned her own experience and expertise into her life’s work.
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).
Significant state investment is required to address ‘shocking’ inequalities that leave cancer patients in the West at greater risk of succumbing to the disease.
A meeting of Regional Health Forum West heard that survival rates for breast, lung and colorectal cancers than the national average, and with the most deprived quintile of the population, the West’s residents faced poorer outcomes from a cancer diagnosis.
For breast cancer patients, the five-year survival rate was 80% in the West versus 85% nationally; for lung cancer patients it was 16.7% in the west against a 19.5% national survival rate; and in the West’s colorectal cancer patients, there was a 62.6% survival rate where the national average was 63.1%.
These startling statistics were provided in answer to a question from Ballinasloe-based Cllr Evelyn Parsons (Ind) who said it was yet another reminder that cancer treatment infrastructure in the West was in dire need of improvement.
“The situation is pretty stark. In the Western Regional Health Forum area, we have the highest incidence of deprivation and the highest health inequalities because of that – we have the highest incidences of cancer nationally because of that,” said Cllr Parsons, who is also a general practitioner.
In details provided by CEO of Saolta Health Care Group, which operates Galway’s hospitals, it was stated that a number of factors were impacting on patient outcomes.
Get the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie. You can also download our Connacht Tribune App from Apple’s App Store or get the Android Version from Google Play.
Galway 3-18
Cork 1-10
NEW setting; new opposition; new challenge. It made no difference to the Galway minor hurlers as they chalked up a remarkable sixth consecutive double digits championship victory at Semple Stadium on Saturday.
The final scoreline in Thurles may have been a little harsh on Cork, but there was no doubting Galway’s overall superiority in setting up only a second-ever All-Ireland showdown against Clare at the same venue on Sunday week.
Having claimed an historic Leinster title the previous weekend, Galway took a while to get going against the Rebels and also endured their first period in a match in which they were heavily outscored, but still the boys in maroon roll on.
Beating a decent Cork outfit by 14 points sums up how formidable Galway are. No team has managed to lay a glove on them so far, and though Clare might ask them questions other challengers haven’t, they are going to have to find significant improvement on their semi-final win over 14-man Kilkenny to pull off a final upset.
Galway just aren’t winning their matches; they are overpowering the teams which have stood in their way. Their level of consistency is admirable for young players starting off on the inter-county journey, while the team’s temperament appears to be bombproof, no matter what is thrown at them.
Having romped through Leinster, Galway should have been a bit rattled by being only level (0-4 each) after 20 minutes and being a little fortunate not to have been behind; or when Cork stormed out of the blocks at the start of the second half by hitting 1-4 to just a solitary point in reply, but there was never any trace of panic in their ranks.
For more, read this week’s Connacht Tribune.
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GARDAÍ and the IFA have issued a joint appeal to all road users to take extra care as the silage season gets under way across the country.
Silage harvesting started in many parts of Galway last week – and over the coming month, the sight of tractors and trailers on rural roads will be getting far more frequent.
Inspector Conor Madden, who is in charge of Galway Roads Policing, told the Farming Tribune that a bit of extra care and common-sense from all road users would go a long way towards preventing serious collisions on roads this summer.
“One thing I would ask farmers and contractors to consider is to try and get more experienced drivers working for them.
“Tractors have got faster and bigger – and they are also towing heavy loads of silage – so care and experience are a great help in terms of accident prevention,” Inspector Madden told the Farming Tribune.
He said that tractor drivers should always be aware of traffic building up behind them and to pull in and let these vehicles pass, where it was safe to do so.
“By the same token, other road users should always exercise extra care; drive that bit slower; and ‘pull in’ that bit more, when meeting tractors and heavy machinery.
“We all want to see everyone enjoying a safe summer on our roads – that extra bit of care, and consideration for other roads users can make a huge difference,” said Conor Madden.
He also advised motorists and tractor drivers to be acutely aware of pedestrians and cyclists on the roads during the summer season when more people would be out walking and cycling on the roads.
The IFA has also joined in on the road safety appeal with Galway IFA Farm Family and Social Affairs Chair Teresa Roche asking all road users to exercise that extra bit of care and caution.
“We are renewing our annual appeal for motorists to be on the look out for tractors, trailers and other agricultural machinery exiting from fields and farmyards,” she said.
For more, read this week’s Connacht Tribune.
Connacht Tribune Digital Edition App
Download the Connacht Tribune Digital Edition App to access to Galway’s best-selling newspaper.
Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
Or purchase the Digital Edition for PC, Mac or Laptop from Pagesuite HERE.
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The Connacht Tribune Live app is the home of everything that is happening in Galway City and county. It’s completely FREE and features all the latest news, sport and information on what’s on in your area. Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
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