Killarney-based Elaine Walsh says her year of treatment for breast cancer was like being minded in a cocoon.
“Everything was safe. You knew you were being monitored regularly — any issues were dealt with.”
It was a different story immediately post-treatment — Elaine felt in complete shock.
“You’re finished. It’s like ripping a band-aid off. You feel very vulnerable. You’re kind of in limbo — if you have a setback or feel unwell, you’re thinking ‘where do I go — the GP, the oncologist?’ It’s very up in the air.”
For the past 10 months, the 44-year-old has been a participant on the LYSA (Linking You to Support & Advice) study at CUH. It means she’s reviewed every two months by the nurse-led survivorship clinic, which refers her for appropriate intervention for any troublesome symptoms arising from her cancer treatment.
“LYSA has 100% helped me. There’s the comfort of knowing if I’ve any complex issue there’s a nurse and dietician available to me for 12 months. It’s more monitoring,” says Elaine, who works as a personal assistant for a charity.
“My skin broke out in psoriasis last year. It was all over my body. It was so debilitating and traumatising. Only for the oncology nurse helping me through, referring me directly for light therapy for a few weeks, I don’t know what I’d have done.”
LYSA has helped too with the emotional fallout from cancer and its treatment.
“You’re so focused on getting through treatment, you block everything else out. When it finishes all the emotions bubble up. I felt I didn’t know who I was anymore. I’d look in the mirror and not recognise myself. My hair had been blonde — it grew back black. I’d look in my eyes – it was like looking at a stranger. And my skin really threw me. I’d be thinking ‘will I ever get back to what I was? What’s the purpose of my life?’"
At LYSA, Elaine was also encouraged to avail of community and online supports. "I’ve used Arc House, which was amazing.”
Living an 80-minute journey from CUH, she loved the remote, virtual aspect of the clinic — during their year-long participation on the study, women attend the clinic in-person only at the very beginning and again at the end.
Otherwise, consultations are over the phone or by video-link.
“Doing it from the comfort of my own home really suited me. I wasn’t under pressure.”
Oncology nurse Kate O’Connell is clinical nurse manager and research support officer with LYSA. She says women arrive onto the study within a year of finishing their primary cancer therapy.
“Some could be three or four weeks post-treatment, but they have up to a year to come onto it,” says Kate.
She says LYSA wants to find out three things:
- Do women want this kind of support?
- At what stage do women need it?
- What services do they require?
The women she meets on LYSA are delighted to have support, she says.
“They find the nurse-led support is much more about the woman – her issues, her priorities, as opposed to her treatment and diagnosis. So we like to think this study is helping build confidence and self-efficacy, allowing women self-manage symptoms.”
Post-cancer treatment, not all women feel similarly.
“Some just want advice and guidance about how to get back to and move on with their lives. Others can be lost and trying to come to terms with what has happened to them. They can be lacking in confidence around where they go from here, as mothers, wives — role dynamics in the house may have changed – and in their work roles.”
Returning to work can be a big issue, with women not knowing when the right time is — or if they’re able.
“They may have become less active post-breast surgery and not have the same range of motion in their arm. Fatigue will definitely be an issue. Cognition is big — concentration and memory can be affected and made worse if she has menopausal symptoms.”
Explaining that women are put on a personalised symptom-management pathway if their reviews show up troublesome symptoms, Ms O’Connell says: “So if it’s insomnia we look at why it’s happening. Is she getting up a few times at night to pass urine or getting hot flashes? We look at [interventions such as] referral to the continence nurse service in CUH, or using techniques like paced breathing or acupuncture for hot flashes. I also educate about sleep hygiene.”
Fear of cancer recurrence can be heightened at times of hospital visits or if a woman notices symptoms she thinks could be related to cancer.
“First thing is to listen to her anxieties and fears. Support might be about rationalising these fears — providing knowledge on what to look out for, what are the signs of recurrence. We also refer women directly to places of support like Arc House in Cork and Recovery Haven in Kerry.”
When Wexford-based Mandy Quirke finished treatment for globular breast cancer in February 2016, she just wanted to move on. “I just wanted to get back to myself, get back to work, put it all behind me.”
Now retired from primary school teaching, she recalls quickly realising she needed expert help to recover her physical health.
“I was wrecked. I had a big problem with fatigue. I also had a lot of rib pain after the radiotherapy. My memory and concentration weren’t as sharp as they were. I also felt the emotional impact of having had cancer kick in then,” says Mandy, who’s now a patient advocate with LYSA, sharing the benefit of her experience to support the study.
The 61-year-old doesn’t recall her oncologist ever suggesting she go to a cancer support centre. She’s glad LYSA is looking to change this, knowing it’ll make all the difference to women who currently, for the most part, navigate the challenges of the post-treatment stage alone.
On her own initiative Mandy went to Hope Cancer Support Centre in Enniscorthy, where she had nine sessions of reflexology.
“It was fantastic. It really helped. They checked my arm for lymphoedema. They measured me for a bra. I could have joined a women’s group. There were walking, art and meditation groups. There was a counsellor. You could have access to what you wanted when you wanted. That’s what LYSA is doing.”
Mandy says the listening ear — and validation of feelings and experiences — LYSA offers will massively support women.
“It’s great when you discover there are common reactions to having had cancer. Not everyone will have the same reaction as you, but your reaction will be common in the surviving population.”
The suggestions for symptom-management will also give women a sense of personal control.
“During treatment, I wasn’t in control of anything. I was told all the time what was going to happen. I just moved along. So it was lovely when, afterwards, someone suggested something to help me support myself. I’d think ‘yeah, I could do that’, even if it was something as simple as taking a tonic,” says Mandy, who found Pilates helpful post-treatment.
Kate O’Connell says LYSA — with its patient-centred support specific to each woman — wants to prove that post-treatment support services are needed, and that they can be put in place.
“We want to help women live an optimal life and flourish in their post-cancer life. And we’re listening to these women – learning from them for future services and for the planning of survivorship care.”
See www.cancer.ie/cancer-research for more on Women's Health Initiative (WHI), Cancer survivorship support for women.