Five months on from double mastectomy plus breast reconstruction, Cork City councillor Fiona Ryan is in good form.
Having heard stories of women who struggled a lot with pain and mobility for up to six weeks after surgery, she feels very lucky that two weeks post-op her pain levels were manageable.
“Recovery’s completely individual. After two weeks I was certainly over the mountain. Now the swelling has gone down, I’ve healed up really well and my mobility is almost fully back,” says the 32 year old.
Fiona was “very well settled” in her decision to opt for the radical surgery ever since she tested positive for the BRCA1 gene mutation, putting her at 60-90% lifetime risk of developing breast cancer. “They’re not odds I like. And I didn’t just want to manage risk – I wanted no risk.”
Getting gene tested came after a family member got breast cancer and subsequently tested positive for the mutation. Fiona waited two years to get on the waiting list to be tested. And altogether 10 members of her family have got tested – seven have the mutation. Most pressing of all, her grandmother died from breast cancer before she was 40, having first got it aged 30 with multiple recurrences through her 30s.
The first in her family to get preventive surgery, Fiona says her generation’s the first to be able to be proactive. “I’m very blessed to be in a position to know and take steps to prevent breast cancer happening, rather than reacting after it occurs.”
There was no over and back either about opting for immediate breast reconstruction – “I wanted to get it all over in the one go” – and she also chose to “get rid of the nipples” because they could be “a basis for cancer to grasp onto”.
Actress Angelina Jolie also underwent double preventive mastectomy after testing positive for the mutated BRCA1 gene. “Like most women with the gene, I probably knew about it because of her but I wasn’t influenced by her,” says Fiona, who’s grateful to have already had the surgery given rising Covid levels at start of October.
“My consultant said if the surgery had been two or three days later, there’d have been a big question mark whether it would go ahead.”
What surprised her post-surgery was severe discomfort from swelling-induced pressure. “You have to wear a compression bra that’s more like a corset – it’s crucial for recovery and to keep the reconstruction in the right place. I found the pressure extremely uncomfortable.”
Neither did she realise how hard it would be to get essential medical devices/aids after the surgery. “You get one compression bra, the one you’re in immediately after surgery. It’s not enough when you’re in there sweating, bleeding and stained and there’s no replacement. I asked and was lucky enough to get a second one after I left – but it was the hospital being good about it.”
Aside from difficulty sourcing medical-grade compression bras that cost at least €150 when you do manage to track one down, she also found it extremely hard to get thigh-length compression socks – three different pharmacies all said they’d have to order them. And then there were the drain bags – device with big pockets worn around the waist to carry bottles that pump painkiller and also ‘drain bulbs’ that are attached to wires inserted in the breast area. “I ordered [the drain bag] from the UK the week before going in but it didn’t arrive on time – without it you’re juggling four things when you go for your recommended walks on the ward and if you drop one it really wrenches.”
Fiona says her primary emotion pre-surgery was anxiety about it being delayed. And the fact she doesn’t have a lot of “body issues” helped emotionally.
But she knows she’ll have “a lot more trepidation” when she goes for oophorectomy (surgical removal of ovaries), which she hopes to do before she’s 34. “Ovarian cancer’s very deadly – with the gene mutation I’d have a 60% chance of developing it. At some time – from the preventive standpoint – it’s something I’m sure I want but I won’t be quite so blasé about it. The longer-term implications are much greater – you immediately go into menopause, a decade earlier than usual. You go on HRT straight away.”
A key consideration is she hasn’t yet had children and though she hasn’t started trying to conceive, it’s something she and her partner will be considering over the next year. Fertility isn’t something she takes for granted, particularly after discovering recently she has polycystic ovary syndrome (PCOS). “It’s not too bad but it’s a factor,” she says.
And then there’s the question of finances. The Solidarity Party representative is on a councillor’s wage – about €17,000 a year – and her partner, a waiter, is on the Covid payment. The couple rent their one-bed apartment in Blackpool for €1,000 a month. “It’s not a question of will I be in a good financial position [to have a baby] – it’s a question of will I do it despite our financial position?”
She and her partner have been together seven years – back then they had no idea she had the BRCA gene mutation. “So all this fell on top of him as well as me. But I couldn’t fault his approach either before or after the surgery. He has been nothing but supportive and that has been crucial, practically and emotionally,” says Fiona, adding that around preventive surgery – and having children – he has been “very gracious, very much of the opinion that it’s my body, my choice”.
Originally from Dublin, she saw her parents for Christmas. Covid restrictions meant she hadn’t seen them since well before her surgery. Her dad’s relieved she’s over the surgery, while her mum was very worried for her. “She’d have liked to be a lot more present, but they’re both immuno-suppressed and we’re in a pandemic.”
In a Facebook group for women with the BRCA gene mutation, she feels angry that one of the women – the same age as her, due to have the same operation she had in Dublin – has now been told she won’t be able to have immediate breast reconstruction due to budget cuts. “To say to someone ‘you have to wait, and we don’t know how long for’ – that just makes me angry. I’d have been in a very different mental state if it was said to me I couldn’t have breast reconstruction.”
Asked where she gets her great reserves of courage, Fiona’s quick to say she doesn’t consider herself courageous. “I consider myself very lucky. Imagine the technology we have now – not just to be able to identify where cancer comes from but to do something about it.”
- On average, women in Ireland have a one in ten chance of developing breast cancer in their lifetime. Only 5% of breast cancer cases are hereditary.
- For women with one/two close relatives affected with breast cancer the lifetime risk of getting the disease is 17–30%.
- Women with BRCA1 gene mutation have 60–90% lifetime risk for breast cancer; for women with BRCA2 gene mutation the lifetime risk is in region of 45–85%.
- Women with BRCA mutations have increased risk of developing breast cancer at younger age.
- Screening once over age 30 and risk-reducing surgery are among options available. Marie Keating Foundation spokesperson says everyone has to decide which option’s best for them. “Your circumstances will be different from your sister, mother or other BRCA mutation carrier – you need to consider how individual choices will impact your life.”
- Currently, there is about an 18-month wait list for public genetic testing in Ireland. At St James’s Hospital Cancer Genetics, the routine wait time is one year.
- Public testing’s generally only done if the person who developed cancer is still living – that individual must first be tested before genetic testing will be done on any family members.
- Private genetic testing available in Mater Private, Blackrock Clinic and The Hermitage.
- Initial consultation fee prior to genetic testing is up to €300. Where no previous family genetic testing has been conducted, additional fee of €1,400 is required to carry out genetic testing – referred to as diagnostic genetic testing. If previous family genetic testing has been done, the additional fee is €500 – referred to as predictive genetic testing.
- Irish citizens can claim back 20% of total cost for diagnostic or predictive genetic testing.
- Your health insurance may cover a percentage of genetic testing fee.
- Individuals may also avail of ‘A Panel Test’ if they can’t afford either diagnostic/predictive genetic cost. Panel Test (€500) looks at 30 different genes, including more common genetic mutations of BRCA1, BRCA2 and PALB2. After BRCA1 and BRCA2, PALB2 is currently the third most prevalent breast cancer gene. Panel test is sent to US for analysis.
- The Marie Keating Foundation supports a trained peer-to-peer support network of women who are BRCA 1 or BRCA 2 positive, to offer women diagnosed with the mutation positive support/information. See: www.mariekeating.ie/brcasupport
- Irish Cancer Society is currently funding an advancer nurse practitioner in St James’s Hospital, Dublin, who’s working on a project to develop an easily-accessible decision aid for women with BRCA gene mutation. It will facilitate more engaged and informed decision-making.
- ICS is also funding a study – being undertaken by Professor Josephine Hegarty at UCC – it seeks to hear experiences of the cancer genetics services in the Irish context from a range of perspectives: that of healthcare professionals, patients, family members and members of the public.
- Anyone with concerns/questions about cancer can contact ICS support line on Freephone 1800 200700.