Catching childhood cancer early ensures better outcomes: Prof Janet Poole

Listen to Prof. Janet Poole share her experience in treating childhood cancers here.

Professor Janet Poole is Principal Specialist and Head of the Paediatric Haematology/Oncology unit at Charlotte Maxeke Academic Hospital and the Faculty of Health Sciences at the University of Witwatersrand in Johannesburg. Along with four colleagues and two fellows in paediatric oncology, she sees 40 to 60 child cancer outpatients every day at the Charlotte Maxeke Johannesburg Academic Hospital – a state facility - treating between 100 and 150 new confirmed cases per annum.

At the nearby private Wits Donald Gordon Medical Centre (WDGMC) they treat another 60 to 80 new child cancer patients annually. There are thousands more patients on their books, dating back four decades. At least 50% of these are considered to be in remission, having been off treatment for more than ten years. It’s an almost impossible ask, meeting this demand for care with so few specialists on hand - especially when so many patients present tragically late. But Prof. Poole and her team soldier on, undeterred.

She picks up the story in her own words:

A dire need for more state and private service oncology specialists

Caring for child ongology patients requires a significant service and there are not nearly enough doctors to do it. We can’t do much research, even though we’ve generated a huge amount of data. There’s just not enough time.

Each patient belongs to the whole clinic. We all look after them. When I’m on call I see in-hospital patients, otherwise I deal with patients at the clinic, organising chemotherapy, radiation, blood transfusions, check-ups and doing follow-ups. At both clinics, (she works in state and private healthcare), we also see all the benign haematology (blood disorder) patients. At Charlotte Maxeke Hospital we see new diagnoses in children up to 16-years of age. This is a concession as the standard cut-off is usually age 12, with anyone older usually referred to an adult oncologist - which is far from ideal. The literature is clear: all over the world children, (from birth to age 18), do better in a paediatric oncology unit than those treated in an adult oncology unit.

I do think teenagers need a unit specially tailored to their unique needs, but there are not enough clinicians to dedicate to them specifically, nor the will from the authorities to prioritise such a unit – that’s the reality.

Childhood cancers are often fast growing, yet respond well to chemotherapy

Coming back to what I consider most important, the onset of treatment for childhood cancer should be priortisied and, to my mind, needs to be treated as an emergency. You can’t wait. Childhood cancer is often very fast growing, unlike most adult cancers. A third of childhood cancer stems from leukaemia. Then, solid tumour cancers occur mainly in the organs.

Many of the cancers children develop are embryonal tumours, ones that develop before birth during the mother’s gestation. They respond well to chemotherapy and need to be staged as soon as possible. Staging helps describe where a cancer is located, if or where it has spread, and whether it is affecting the other parts of the body. Knowing the stage helps the doctor plan treatment, including the type of surgery and whether chemotherapy or radiation therapy are needed. When we get a child, we arrange everything in a week, if not faster. There’s no waiting list in our unit. The other thing about childhood cancer is that it initially responds very well to standard treatment protocols, which satisfactorily handle 90% of cases.

However, when the cancer is very advanced, or in the case of certain unusual or unresponsive cancers, we may want a second opinion. Most often, I simply call up a paediatric oncology friend for input as we’re a very tight knit, small community and we all treat our kids the same way. We constantly talk to one another. It’s not that I won’t write overseas and ask for an opinion, but a lot of the treatments and facilities that meet the needs of those difficult 10% of cases are located overseas, and much of it is experimental and still at clinical trial stage or unaffordable for most of our patients.

We do our best to find life-saving local solutions. We go to the n_th degree for our patients, but we have resource limitations in the public sector. Parents will sometimes do their research online and come to us to discuss the options, but we can’t afford to motivate for a biological antibody, at R60 000 per dose and with questionable efficacy.

A tragic reality: childhood cancer that presents late

If parents can get their child to us early enough and we diagnose early, the cure rate should be between 70% and 80%. The reality is that in South Africa we get so many kids presenting late that our actual cure rate is between 50% and 60%. We know we’re not diagnosing all the cancers out there. The global average incidence of childhood cancer is 150 per million but we have an incidence of 75-80 per million paediatric cancers registered in South Africa. Translated, that means that if the global annual incidence rate is 15 per 100 000 population, we’re only seeing 8 or 9 per 100 000 per year. It’s increasing a bit because we’re catching more kids earlier, but it’s not great.

In South Africa, many kids die of brain tumours that were never diagnosed because they simply never got to a place that can do a scan. Sure, paediatric cancer is not a common disease. The global average is that one in 600 children will develop cancer. In this country, it’s much lower, but again, that’s probably because fewer kids are being diagnosed. We support all the early warning signs awareness campaigns and try and heighten awareness among our medical students because there are delays all the way down the line for patients – from patients to clinics and doctors.

Part of the problem is that the most childhood symptoms are not specific. There are quite a few instances where you suspect the kids weren’t examined properly. It they present with a lump, they’re not referred for a biopsy and the lump grows and grows. Bone tumours are often diagnosed very late because nobody recognises it might be a cancer. Bone tumours usually involve painless swelling in one of the long bones. They get a bit of pain playing soccer or somebody kicks them and they notice a bit of swelling. This is often not suspected to be anything serious. However, when it has grown very big, it’s often too late.

We need to keep a very high index of suspicion. Doctors need to keep that in the back of their mind. Parents need to advocate for their children. If your child is not getting better and the doctor or clinic staff are not listening to you, make sure somebody examines the child and listens to you. A lot of parents don’t have knowledge so they don’t question anything or anyone - least of all, a doctor.

Adult solutions for kids from Google - a fruitless exercise

Often parents tout Google-searched adult causes or solutions to their children’s cancer. However , childhood cancer is usually not caused by poor diet or something in the environment. It’s usually linked to a fault in the genes. There are a few syndromes where childhood cancer may be genetic, but mostly everything you see on the internet pertains mainly to adult cancer. Many anxious parents turn to complementary medicines. I have no objection to complementary medicine, but in the context of paediatrics, a lot of it is actually harmful. Again, the treatment of childhood cancer is very specific, you cannot extrapolate adult advice to kids.

Many reasons for hope in the face of a childhood cancer

• Childhood Cancer is curable, provided it is diagnosed early. Today, with advances in treatment and supportive care, childhood cancer is not an automatic death sentence.
• Many children who have survived cancer go on to lead normal lives, and achieve what most people take for granted - they go to school and university, get married, and have children.
• Children up to the age of 16 years with cancer should always be treated in a Paediatric Oncology Unit. This, to ensure the best possible chance for the child to be cured.

We will continue to work towards and fight for provision of correct, up-to-date treatment in both the public and private sector to give all childhood cancer patients the best possible chance at life.