Who’s looking out for the survivors of childhood cancer?

To be diagnosed twice with different forms of cancer before the age of 10 is an incredibly cruel twist of fate. But Lisa Comer is making the best of life despite the challenges she faces arising from her illness and treatments.

Now aged 18, she was only 15 months when she was diagnosed with leukaemia in August 1997 and needed a bone marrow transplant that was carried out in Bristol.

Lisa’s family then had seven and a half years of being “relatively relaxed” about her health, says her mother, Marie, until another bombshell was dropped: a second cancer diagnosis on November 9th, 2005.

“She started getting headaches and they thought it might be migraines.” It turned out to be an inoperable brain tumour and Marie and her husband, John, were warned their youngest child might not have more than six weeks to live.

“But nine years later, she is still giving me grief,” jokes Marie affectionately at her home in Mount Merrion, Dublin, while Lisa listens.

The two cancers were probably not unconnected: staff at Our Lady’s Children’s Hospital, Crumlin, (OLCHC) in Dublin, believed the tumour was probably a very rare side effect of the total-body irradiation that Lisa needed for the bone marrow transplant during her leukaemia treatment.

Lisa responded extremely well to the drug temozolomide that she was given to alleviate the brain tumour, and she also had six weeks of radiotherapy.

However, she suffers long-term side effects, primarily from the total-body irradiation. These include diminished height, learning difficulties, dental issues and a vulnerability to osteoporosis.

Now, in her final year at Mount Anville School in Dublin, it has been a big upheaval for Lisa to have to leave the all-embracing care of the OLCHC, the national centre for paediatric cancer, and transfer into adult services at several other hospitals in the city.

It’s the worst possible time for these youngsters to be transferring, says Marie. “Everything is changing and if that one constant could stay it would be brilliant. They are coming into adulthood, they are becoming aware of their issues and they are moving on from family, because they become family as such, at Crumlin and are thrust into [the care of] strangers.”

Lisa has to attend St James's for the growth clinic (endocrinology) and haematology check-ups, while she goes to Beaumont Hospital for oncology.

At Crumlin she had “brilliant” psychological support once a fortnight, says Marie, and was referred to adult services last May but has yet to hear anything.

The teenager’s first visit to the adult services at St James’s Hospital got off to a bad start when a member of staff presumed that Marie was the patient and told her her daughter would have to wait outside.

“That really annoyed me,” says Lisa. “They took size into consideration before even asking who the patient was.”

She is also fed up with hearing her past illnesses and treatments rehashed by her mother for professionals who don’t seem to have sufficient records of her medical history.

“I just switch off because I don’t have to hear it all over again,” says Lisa.

“Because they have only a covering letter,” explains Marie, “you have to go back to square one and you have to relate all the details. You’re telling all this in front of Lisa, who finds it very upsetting.”

She thinks there must be a better way of doing it. “I don’t remember half the drugs or the doses of the radiotherapy she got and stuff like that.”

Marie also misses OLCHC. Up to now, if she had any concerns about Lisa, “I knew who to ring. I don’t know who to ring now; I don’t know what to do, where do you go?”

She would love to see the sort of "one-stop shop", follow-up care programme that clinical nurse specialist Karen Kinahan of Robert H Lurie Comprehensive Cancer Center of Northwestern University in Chicago runs for adult survivors of childhood cancer. Kinahan was in Dublin last September to speak at an international cancer conference in Trinity College Dublin.

Like any parents hearing of their child’s cancer diagnosis, survival was the only thing on the Comers’ minds in 1997.

“You don’t think long term,” says Marie.

“I do,” chips in Lisa.

Survivors such as Lisa are “living with the consequences of our decisions on their behalf”, continues Marie. It’s not that she and John feel guilty because there was no choice: “There would have been no life to be lived without treatments, as toxic as some of them were. You’d do it again in the morning.”

Medical advances

Thanks to medical advances in recent decades, more than 80 per cent of people diagnosed with cancer in their childhood or adolescence now survive. While most, understandably, want to put it behind them, for some there will be ongoing physical and mental issues and risks, such as infertility and hearing impairment.

This is why a system of long-term follow-up care for childhood cancer survivors in Ireland is being advocated by a new group, CanCare4Life, that was launched last month. Its founding members, Patricia McColgan and Garry Owens, are parents of adult survivors of childhood cancer, both of whom were treated for brain tumours.

Patricia’s son, Rory McGrath, was a six-foot-three, rugby-playing 14-year-old when his tumour was diagnosed seven years ago. He had to have stem cell transplants and radiation therapy to his brain and spine, followed by high-dose chemotherapy.

“It was tough treatment,” says Patricia with an air of understatement. And he never did go back to school. “Education took a different route.”

Today, 21-year-old Rory loves life and is getting on with it. But ongoing health issues include the fact that his thyroid doesn’t work and he produces no adrenaline or cortisol, so has to have adrenal supplements.

After Rory left the care of OLCHC, the lack of follow-up and communication between specialists in the adult services became apparent to Patricia. When she met Garry Owens, who had experienced similar frustrations with his son Daniel, they decided to try to do something about it.

“We want appropriate long-term care, which allows them to go off and live their lives,” she explains.

While survivors don’t want to be defined by their childhood cancer, there is a body of research to indicate that certain types of cancer treatment are likely to result in challenges down the line.

Maximising outcome

It is one thing curing children of their primary malignancy but it is the follow-up that maximises the outcome for them into adulthood, agrees Prof

Owen Smith

, consultant paediatric haematologist at OLCHC.

“Some of the complications can be prevented if enough vigilance is exercised,” he says. Unlike 30 years ago, “we are curing more with less”, so there is not a big population with long-term issues – and catering better for them should not be difficult.

“We know the guys who are going to get complications and long-term effects: it is a matter of picking them out and following them through.” Also key, he acknowledges, is a smooth transitioning of the youngsters from a paediatric to adult environment.

Locating the new children’s hospital on the campus of St James’s Hospital, which is the State’s biggest adult cancer centre, will be ideal for a far better transfer process, he says.

The psycho-social wellbeing for these patients is also absolutely crucial, Smith stresses. “It is as important as looking after their thyroid function or pancreatic function.” The launch of CanCare4Life is “fantastic”, he adds, because follow-up care is “so, so important”.

Battle ahead

Even if they succeed in getting a multidisciplinary programme of care set up, Patricia knows there may still be a battle to persuade young people to avail of it. However, they are more likely to follow a clear pathway, rather than, she suggests, having to “forage” for specialists, who may be unfamiliar with cancer treatment fall-out.

“They have earned the right to go somewhere where people know about this,” she stresses.

There is also the matter of education and entitlements. “They don’t fit into the traditional view of ‘disabled’,” she points out. Yet, for some, their abilities have been impaired by what they’ve been through.

Many survivors of childhood cancer will not be affected in the long term, stresses Garry, but regular check-ups would still be advisable and their GP should be aware of their past treatment and any risks that it might pose.

He met Patricia last year at a function in the Boyne Research Institute in Co Louth (see panel), which is engaged in research into long-term vulnerabilities of adult survivors of childhood cancer as part of a pan-European project.

To some extent, says Garry, it was news to him and his wife, Frances, that the health problems their youngest son, 34-year-old Daniel, experienced as an adult were due in large part to the severity of his treatment for a brain tumour at the age of three.

He was operated on at the former Richmond Hospital in Dublin and afterwards his parents were told he had about six months to live. They decided then to take Daniel to the Royal Marsden Hospital in Surrey, which was a centre of excellence for cancer treatment and close to Frances’s family home.

There Daniel had full-body irradiation and also chemotherapy “using drugs that would now be used much more sparingly; but that was then and this is now”, says Garry. They were told that Daniel wouldn’t be as bright afterwards because “a lot of his brain was burnt away and cut away”; a phrase Garry still clearly recalls 30 years later.

“We didn’t know if he would learn his alphabet – he did learn his alphabet. We didn’t know if he would be able to ride a bicycle – he was able to ride a bicycle.” He achieved a pass Leaving Certificate, has had various short-term jobs and is currently training in preschool childcare.

Daniel lives at home with them in Skerries, Co Dublin, and it is “difficult to know what the future holds” says Garry, who will celebrate his 50th wedding anniversary with Frances next year. He is hoping that through the establishment of CanCare4Living “there will be a structure there after us”.

Daniel can’t remember his illness and treatment but is only too aware of the issues he is living with. He injects himself daily, receives three-monthly hormone injections and attends an endocrinologist at Beaumont Hospital once a year.

“I suffer from depression,” says Daniel. “There is a family link to that so I am not quite sure if it is to do with the treatment but I have read up that it is a side effect of all the chemo and radiotherapy I had.”

It also affected his growth – “I am five foot one” – and that has contributed to difficulties with socialisation.

“It takes me a while to get to know people, before I feel comfortable in a situation,” he says. “I can be hyper-sensitive”: remarks about his height or his ability are liable to send him into a rage

Socialisation is difficult for Lisa Comer too. After recovery from the brain tumour, she felt her peers had moved on and left her behind.

"Whenever I am at a party, people are towering over me and you just want to get out of there," says Lisa, who feels at total ease only when socialising with fellow members of CanTeen, a support group for anybody aged 12-25 who has, or has had, cancer.

“They totally get her,” says Marie, who sees her daughter as caught between two worlds; the so-called normal world and the world of people with disabilities. Verbally, Lisa can hold her own but, apart from her height, difficulty with short-term memory affects her most.

“It is very, very tough for her,” says Marie, who would welcome a clearer pathway, as being advocated by CanCare4Life. “She shouldn’t have to fight for everything.

“Lisa has a fantastic attitude,” she adds. “Her attitude is ‘This is it, I can’t do anything about it, so this is me.’ She is an absolute trouper.”

For more information see: cancare4living.ie and boyneresearch.ie. The Irish Cancer Society’s national cancer helpline is 1800 200 700. swayman@irishtimes.com