Elaine Walsh noticed a hard lump in her breast soon after the first lockdown in 2020. When she underwent testing at Cork University Hospital (CUH), they told her she had cancer, and she just “burst out crying”.
Aged 42 at the time, she started treatment in September of that year. It was after this, however, that she really began to struggle.
“When you’re in treatment, you’re so focused on getting better. But when you’re finished, you’re in limbo,” she said.
When she was asked to take part in a first-of-its-kind clinical trial for women who have been treated for early-stage breast and gynaecological cancers, it was “exactly what I needed”.
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The survivorship programme, called Lysa (Linking You to Support and Advice), acted as a blueprint to meet the needs of women who survive cancer, now a growing proportion of patients due to better screening and treatment options.
[ Galway-based project targets painful side-effect of cancer treatmentOpens in new window ]
A total of 200 women took part in the Lysa trial in the west and south of the country, evenly split into two randomised groups. One formed a control group who received standard follow-up care, while the second received a new digital model of care.
The patients filled in online surveys every two months which monitored specific symptoms. Based on their responses, they were then offered virtual nurse or dietetic consultations with a view to helping them manage their symptoms.
The study, which was primarily funded by the Irish Cancer Society, found the intervention was highly acceptable to participants and healthcare professionals, with these patients experiencing significantly improved quality of life compared to those without these services.
Josephine Hegarty, professor and chair of nursing at University College Cork (UCC), and one of the principal investigators of the trial, said many who survive cancer have “residual effects” from some of the treatments.
“We wanted to establish how you can help people to live well after the cancer treatment,” she said. “Women can live with psychological concerns, such as fear of recurrence, or residual physical concerns like fatigue or cognitive issues.”
Principal investigator Prof Roisin Connolly, a medical oncologist, said international guidelines in recent years have shown the importance of survivorship care. Currently, some centres offer this but, she said, “there are gaps, because hospitals are very busy”.
“People are changed after a cancer diagnosis, and we need to make the support available to those who need it. We used digital tools and apps to allow people to be at home. It meant having patient follow-up plans that provide independence.”
Connolly called for this system to become the “standardised approach”, adding that “ideally all cancer centres around the country would have sufficient nursing staff” to provide such a programme.
Oncology dietitian Katie Johnston found many cancer survivors faced misinformation about what they should or should not eat after treatment, and this often heightened their anxieties.
“It was trying to build up their muscle mass because maybe they lost it during treatment. So we contacted them and did a personalised nutritional therapy session as well,” she said.
“It’s a real minefield for them going out, knowing what they should or shouldn’t be doing. A lot of the time my work was debunking those myths. You know, saying things like ‘let’s have some carbohydrates’, because that can help with energy levels. Or ‘let’s have protein because that can help rebuild your muscle mass or help with bone health’.”
For Walsh, the process was “life-changing”, as it meant she was able to raise concerns with trusted medical professionals when issues arose after treatment. She was particularly grateful for access to a dermatologist and dietitian.
“I had psoriasis all over my body. I’m on an immunosuppressant now and have no psoriasis, which is great for my confidence,” she said.
“It helped me with being able to stand on my own two feet again after going through cancer treatment. I was able to feel like me again.”
