Care shouldn't stop after the 'all clear'
Treatment for children with cancer is tough, yet necessary. But no one prepares the patients for the long-term effects that follow them all the way into adulthood
When Lindsey Sweetman (23) was just six years old she was diagnosed with non-Hodgkin's lymphoma. After chemotherapy Lindsey's illness went into remission. However, the following year, aged just seven, she was diagnosed with leukaemia.
"I had to have more chemotherapy, full body radiation and a bone marrow transplant," Lindsey explains. "The first time around I didn't have any idea of what was happening, but the second time around you have been there and done it so you have an idea of what is coming. I was in the hospital on and off for a long time and I would have picked up a lot of infections, but I had my mam and my nanny was always there for us."
After her second bout of cancer treatment Lindsey recovered and went on to finish school and became a special needs teaching assistant in adulthood. But while she is endlessly grateful for the treatment which saved her life all of those years ago, Lindsey only became aware of the long-term effects of this treatment in recent years.
"I didn't expect the late effects that the treatment had on my body," she explains. "I had to take time out from school so I had problems learning, and I am dyslexic as well, so it has hindered my ability to learn because the chemo can affect your brain and hormones too. But also, because of the full body radiation, the thyroid gland and the pituitary gland were affected, so I don't produce my own hormones. I have to take tablets. I am a little bit shorter than I should be and puberty only started because I had the tablets for it, it wouldn't have started by itself.
"I would be infertile as well because of the full body radiation, so that would have destroyed any eggs that I would have had," Lindsey adds.
Lindsey has learned to cope with the late effects caused by her life-saving treatment, however, she now campaigns for such issues to be recognised within the health sector, so that people who may have had cancer in their youth are not left to fend for themselves once they are no longer part of the paediatric system.
"It's almost like 'you're all right, you're grand now,' and then you are out in the real world and it's only as you get older that you start having all of these side effects and you start to ask questions," Lindsey says. "It's only really then that you are told, 'Well your treatment damaged this, this and this!' and that you will need lifetime medication.
"People look at it and say 'Well, you had cancer and you don't anymore, so you are grand!' but it's only when you look into that you realise there are a lot of side effects too. There is a psychological issue as well," Lindsey adds.
"Even relationship-wise you are constantly wondering if you get into a relationship when do I mention the fact that I might not be able to have kids? It's not just the physical side of things, emotionally and psychologically it impacts on you too."
Lindsey is now part of the CanCare4Living initiative, which aims to highlight the long-term effects of cancer treatment in childhood and adolescence.
"It's only now because children and teenagers are surviving into their late 20s and 30s and beyond, that we are realising the side effects that are there," Lindsey explains. "Basically, we would hope that everyone's file - any medications and treatment they have had - would be available to any medical practitioner anywhere, whether it is a dentist or GP, so that they would be able to see what treatment or medication you have had, which could impact on treatment that you might then need to have."
CanCare4Living is also hoping to inspire the creation of a specific clinic to deal with children or teenagers, who have had intensified treatments like Lindsey.
"Treatment on an adult body is completely different to treatment on a developing body," Lindsey explains. "So to have a specific clinic for all of the different specialists would be a huge help."
CanCare4Living was set up by two parents - Patricia McColgan and Garry Owens - whose children survived cancer.
Patricia watched her son Rory McGrath (21) go through intensive treatment when he was just 14 and believes that the adult system is much more fragmented for former child patients than they are accustomed to.
"Each of the specialists are doing their best, but it is not the same as it is in the paediatric system," Patricia explains. "When they are in the paediatric system the default way of working is multidisciplinary, so it meant that no matter what challenge you faced you knew that all of the medics were working together and they had your back, they had that full picture and it made sense and was effective.
"When you think about it, it's actually quite common sense," Patricia says. "It also means that for the family you are confident that even when you are facing challenges, the best is happening. The fear factor is taken away. Whereas when they leave the paediatric system, there is firstly not much awareness that there are long-term or late effects from the treatments, and secondly there is a need for more shared information between the specialists.
"Ideally, you would have a multidisciplinary group of people - they don't even have to be in the same building - just a group of people specialists who provide care and who share the knowledge between them," Patricia adds. "Then the appointments that survivors need to go to could be co-ordinated, so that instead of three sets of blood tests, there would be one. They would be co-ordinated by a clinical nurse specialist, so if they had a problem with their heart or their teeth or their bones, they could go to a medical professional who has experience of long-term follow-up treatment with these patients."
Patricia feels this approach would aid the parents and families of the now adults who have had cancer treatment in childhood, allowing them to be confident that these individuals will have the care they need into the future.
"Rory was, we thought, in great health; he was a big six foot three rugby player, enjoying life, he had mild headaches and it turned out to be a malignant inoperable brain tumour," she explains. "So his doctors consulted with doctors internationally and came up with a treatment plan for him and it was very harsh treatment, what they call high dose chemotherapy, and a stem cell transplant and full brain and spinal radiation.
"So all of that treatment did its work and Rory's brain scans have been good since then and I would hate for anyone to hesitate for a moment to give their child the appropriate treatment. But there are long-term effects and specific, follow-up care is needed," Patricia adds. "It is so important."
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