'I’d gone from being in school that morning to being told I had cancer' - Doctor on her gruelling cancer treatment
As more people outlive the disease in younger years, Tanya Sweeney probes the long-term effects of certain cancer treatments, and how those affected can promote continued good health
In the summer after her Junior Cert, Celbridge native Karen O’Neill was, perhaps understandably, feeling run down. She had lost weight and started feeling dizziness; things she put down to the vagaries of exam time. In time, however, the tiredness wouldn’t abate, prompting the then 16-year-old to seek blood tests at the behest of her mum.
“My mum worked in the hospital at the time and a friend took my bloods, and my mum got a call right to her office from the lab — ‘you need to take your child into A&E immediately’,” recalls Karen, now 26 and working as a doctor herself. “That evening, I was sitting in an A&E isolation unit because my white cells were so low. I’d gone from being in school that morning to being told I had cancer — in that moment there was a complete and utter instinct towards my parents, who were devastated.”
Life changed overnight: what followed was six months of chemotherapy. The plan was to have a week of chemo every month, but Karen didn’t leave Our Lady’s Children’s Hospital, Crumlin, for the best part of five months.
“I’d get home for a night or two but it wasn’t normal — you were going home to sit in a bubble,” she admits. “I was cut off from my peers. My friends were incredible but didn’t understand the enormity of it, telling me about their boy troubles. Funnily enough, dying never entered my mind the whole time — I’d just assumed I’d be back in school. Only later did my mum admit that I was sicker than anyone expected.
“At 16, you’re supposed to be independent, but instead you’re in hospital, needing help to go to the bathroom.”
Yet Karen was responsive to treatment, and once she was in remission, was asked to return on a regular basis to the hospital for scans. She was discharged from services at age 21.
Despite having what was regarded as a clean bill of health, the effects of her childhood cancer never quite went away.
“After I got out of hospital I had routine ECGs and was referred to a cardiologist, and I’ve been on medication for my heart as a result of the chemo,” Karen explains. “My heart function and its pumping ability is relatively low — it’s something that will become more significant in my life in 20 year’s time.
“Even things like going to the dentist, you have to mention the cancer on forms,” she adds. “It’s something I’m reminded of on a daily basis.”
Sarah Quigley, now 35, was diagnosed with Hodgkin Lymphoma in 1999, at the age of 16. After diagnosis, she endured six months of chemotherapy and four weeks of radiotherapy at Beaumont Hospital. Happily, the treatment was successful, and once treatment was finished, she too was asked to return for check-ups for five years. After three years, she stopped attending her appointments.
“I just wanted to get on with my life,” she recalls. “I didn’t want to go back and lose three days of my life every month on MRIs and blood tests. The emotional side of it became too much — I’d be an absolute mess going into hospital every time.
“Looking back, there was a lot of talk about ‘chin up’ and ‘get on with it’ but even now, the environment, and the long-term after effects, have reinforced that trauma.”
During treatment, Sarah was told she might not be able to have children, yet she now has daughter Zoe (3) with her husband, Daniel Jordan.
“I had made my GP aware of my medical history, but she didn’t know that there could be long-term side effects of cancer treatment,” explains Sara. “At 20 weeks pregnant, I was told I had hypothyroidism, where you’re not producing enough hormones and is a common side effect of radiotherapy.
“At 38 weeks pregnant I was really tired and breathless — common enough in pregnancy, but in my case it was a sign of cardiac failure. It was a lot of messy trauma that could have been avoided if the information was there.”
As cancer treatments take huge strides with every passing year, the survival rate of people with cancer rises, too.
It’s thought that around 200 people under 18 receive a cancer diagnosis every year. What this means is that as the number of long-term cancer survivors grows, so too does the realisation that they have a complex, specific set of needs to ensure they live a healthy life.
Patricia McColgan of Glasnevin in Dublin became acutely aware that, despite the best intentions in the world, the services for childhood cancer survivors in Ireland had been, for a while, somewhat lacking.
Cancer care in Ireland has been acknowledged as among the best in the world, yet the focus is often on eradicating the disease, as opposed to the long-term effects of treatments.
Her son Rory, now 24, was diagnosed with brain cancer at the age of 14. She observed that a diagnosis at such a young age of not just physically punishing, but mentally gruelling, too.
“If you think about it, you life this life-changing news to a young person, and you add chemo and radiation to their growing bodies… they’re not going to walk away unscathed,” she says.
After realising that follow-up care for childhood cancer survivors would be improved on, she co-founded the charity CanCare4Living.
On Saturday, the charity will hold a conference, ‘Survivorship After Childhood Cancer’ in Dublin Castle, to enable people who have had cancer, and their families, as well as healthcare professionals, to discuss the long-term effects of certain cancer treatments.
“Often, kids stay in Crumlin until they’re 16 or 17, and the damage often starts when they ‘graduate’ from there because there is no co-ordinated service for survivors.
“Our purpose is to raise awareness for the need for long-term follow up care. It’s known that the concentration of effort has been on saving lives but now survivorship needs to be part of the new discipline,” Patricia explains.
“Survivors often don’t have a summary of treatment, so they don’t know what they’re at risk for. After their parents have been quite involved in their care as children and teenagers, these survivors need to transition to look after their own care.”
In the New England Medical Journal of Medicine, a 2006 paper was the first major study to highlight the significant health challenges of childhood cancer survivors.
“They followed these patients for 30 years and compared how they fared compared to their own siblings,” observes Michael Capra, child oncologist with Our Lady’s Children’s Hospital, Crumlin.
“They documented that at least two-thirds of patients had a serious condition as a result of treatment, coming on close to 25 to 30 complications. They can affect whole organ systems; bone tumour patients, Hodgkin Lymphoma and brain tumour patients generally suffer the most.
“There are significant neuro-cognitive deficits,” he adds. “Radiotherapy can damage the neural maturation of the brain, and can damage endocrine production from the pituary gland. They also can have problems in puberty and reaching sexual maturation. That’s notwithstanding the surgical consequences of removing a portion of a patient’s brain.”
Essentially, chemotherapy kills off rapidly multiplying or changing cells, yet it often can’t differentiate between a cancerous growing cell and a healthy one.
Rory is now living a full and active life, although has to take daily injections and medication in order to stimulate adrenaline and HGH production. Patricia also makes note of the psychosocial consequences of an early cancer diagnosis, noting that many of the survivors she has met have reported survivor’s guilt, PTDS, and anxiety.
“One girl, Sarah-Jane, was diagnosed with non-Hodgkin Lymphoma at the same time as me and though we went on the same journey together, seeing each other at chemo sessions, she passed two weeks after her debs,” recalls Sarah. “It was pretty devastating.”
For the first time ever, the National Cancer Control Programme has identified survivorship as an issue, and it’s hoped that a suitable programme will be delivered soon. The hope would be that the growing number of survivors will benefit from a system that can act as a ‘central’ point of contact, enabling them to reach out to professionals with any ongoing questions or issues.
Better still, it’s hoped that a programme might offer some much-needed emotional support as they wind their way through adulthood.
“It’s known that there are huge issues not just for the survivor, but for the family, too,” Patricia says. “After all, some of your childhood was taken from you. Psychological support during and after treatment would help both deal with the effects, and help that person back on the saddle in life.”
• The talk on ‘Survivorship After Childhood Cancer’ takes place on Saturday at 10am in Dublin Castle. To register for this free event, and for more information on CanCare4Living, see cancare4living.ie