Despite Councillor Fiona Ryan having to get a double mastectomy and, in just a few short years, an oophorectomy, she still counts herself as extremely lucky.
She will have both breasts and her ovaries removed, probably before she turns 35.
“No one in the history of my family has been in such a privileged position as to be able to know what’s going on in our bodies,” she told The Echo.
“I am deeply lucky to have the tools available to me to identify the ‘why’ rather than having to deal with the consequences of this.
“I’m the first generation privileged enough to take measures to prevent it. That’s how I look at it," she added.
The Solidarity representative is just 31-years-old and has tested positive for a gene mutation which exponentially increases her chances of developing cancer at a young age.
Tumour suppressor proteins are produced by BRCA1 and BRCA2 genes. The cells can’t function properly if they are mutated or altered.
People who have inherited mutations in BRCA1 and BRCA2 tend to develop breast and ovarian cancers at much younger ages than people who don’t.
Of ten people tested for the gene on Fiona’s father’s side of the family, seven of them have tested positive for the gene mutation.
Her grandmother died before she was 40 after developing breast cancer initially aged 30, one year younger than Fiona is now.
Fiona’s odds currently stand at around 80% for developing breast cancer in her lifetime, in comparison to 25% for women in general, and 60% for developing ovarian cancer.
However, with medical advances, people who are diagnosed with the gene mutation have two choices - they can get preventative surgery, as Fiona has chosen, or they can continue with screening with the hope of catching any issues early.
Of her choice, Fiona said: “I don’t want it caught early, I don’t want it to have to be caught at all.” She will also get breast reconstruction surgery on the day.
Preventative surgery was also the path chosen by Hollywood actress Angelina Jolie, and she was one of the first high profile cases that brought this issue into the public consciousness.
Ms Ryan is also keen to point out that breast cancer isn’t a death sentence and said the level of screening she has been able to receive from the breast clinic at CUH has been second to none.
However, she said mortality rates for ovarian cancer, which is harder to catch, are much higher, while it is also quite difficult to screen for.
“After I get the mastectomy, I’m probably going to have to make a choice in the next two or three years to have an oophorectomy which will bring me immediately into menopause. It’s pushed forward the timeline for family planning significantly.
“Unfortunately I’ve discovered that the last thing I have is polycystic ovaries, so it’s been brought forward even more.
“The councillor maternity leave fiasco has become a little bit more urgent,” she laughs.
“I don’t say that in a woe is me kind of way, it’s just the reality of it to just be more conscious about family planning what I would have been previously,” she added.
She also rents with her partner who is a waiter. Fiona lives on a councillor wage which is around €17,000 per year, which is another concern with potentially having children.
Councillor Ryan has come up against some stumbling blocks on the way to this point too.
There was initially a two-year delay in getting on to a waiting list to get tested to see if she had the gene mutation, as to be tested in Ireland the patient must have a 50% chance of having the gene. To get tested her father had to test positive, which he did.
Finally coming to the end of her wait, Fiona’s appointment fell on the day of the nurses' strike, which she is keen to point out she fully supported.
“That’s why I was particularly annoyed at Leo Varadkar using people in my position as a stick to beat the nurses with,” she said.
She also subsequently had issues tying down dates for her surgery. Her first appointment was scheduled just pre Covid but due to logistical reasons, it didn’t go ahead. She was then hopeful it would take place in April, and then July. It’s now scheduled for early October.
“That still has a big health warning on it because we’re seeing (Covid) cases start to rise up again. We’re seeing the readmittance of people into ICU. Cork, so far, we’re lucky enough but it’s not going to ignore us forever especially if we don’t get on top of it nationally,” Fiona said.
“I’m quite pragmatic about this, I’m not very emotional. It’s something I’ve had a long time to lead up to,” Fiona said but admitted that the anxiety and mental health strain the waiting and wondering has put her through is the toughest part of the whole process.
“Generally speaking it’s the paranoia around it that I’ve been trying to fight against, but during Covid and during lockdown when you’re stuck at home and Doctor Google is right there…” she trailed off.
Fiona recently found a breast cyst around nine months since her last MRI. She said she was hugely concerned that it was enough time for cancer to develop, and had almost resigned herself in her head that she was facing her first bout of the disease.
However, she got to see a consultant very quickly and was reassured that she was fine.
“But, it’s that that I don’t want,” she said, meaning carrying around the fear of developing the disease.
“It’s an issue that every woman faces to a degree, but I think it’s a bit sharper for women who have BRCA1 and BRCA2 sufferers, because it’s more likely than not that we’ll develop it at a certain point, and more likely than not that we’ll develop it in our early to mid-thirties,” Fiona added.
She said there are both practical concerns with the surgery, such as organising the house and ensuring she has lifts for check-ups, but there are also emotional concerns..
“As much as I’m blasé about it, I’m not really. It’s something that I really don’t want to have to do.” Fiona said that while she is nervous about the mastectomy, she is significantly more worried about the oophorectomy down the line as immediately going into menopause is “significantly more life-changing.” For now, her focus is on the double mastectomy, following which she intends to take a couple of months off from her work as a councillor to recover, with hopes that she will be back on her feet sooner rather than later.
“Everyone I’ve talked to has been very understanding about it. I haven’t been 100% myself because of health issues in the run-up to this and preparing for it and it being off and on and off and on,” she said.
She has also urged people not to panic after hearing her story, even if they have a history of breast cancer in the family: “There are a variety of flags that need to be raised before you need to worry about this.
“So many women have a history of breast cancer in the family and they don’t ever have the gene mutation.” Regarding her situation, Fiona still believes she is very lucky.
“There is no point in lamenting. All you can do is be grateful that we have the technology to deal with it.”