ISPNO: International Symposium on Pediatric Neuro Oncology


 

From Celia Williams, Research Liaison.

My three days in Singapore listening to researchers and doctors explain the latest discoveries and potential treatments for paediatric brain tumours were excellent. I have come home feeling confused by all the data presented; excited by all the possible new treatments; and reassured that there are so many hugely intelligent people working in this area. Connor would have fitted into their world perfectly if he had still been with us.

Over 800 delegates attended representing many European countries, many States of the U.S. and, of course, Australia together with a large contingent from Asia. It was organised by a committee based out of Singapore to encourage the developing countries to attend. Two Australian doctors from Sydney and Perth, Stuart Kellie and Nick Gottardo, were the main coordinators.

RCD Fund sponsored a two hour block of presentations covering Quality of Life. One of the problems facing children whose tumours are successfully treated is that the therapies used can leave them with long term social, cognitive and physical disabilities. So the need to balance new effective treatments with their seemingly inevitable side effects or “late effects”, as they are called, is paramount. These children have problems with relationships, employment, depression, and as many as 50% of them cannot live alone. It was suggested that all future clinical trials should have a strong focus on Quality of Life and that this would be discussed further in the next conference in 2016. One thought I was left with at the end of our section was, “What happens to these late effects children when they leave paediatric care?” This may be something that we should think about using RCD funds for.

The conference covered all the major types of paediatric tumours:

 

  • Medulloblastoma
  • Ependymoma
  • DIPG
  • PNET
  • Glioma
  • LGG (low grade glioma)

 

All of these complex names are beyond most families’ understanding, but at the end of the day they are all, as Connor and Liz so aptly called them, ‘GDBTs – God Damn Brain Tumours!’ Suffice it to say, the experts are working to understand and classify them using molecular biology (genetic profiling), as well as the more traditional histopathology (looking at cells down a microscope). They are getting closer to finding parts of the tumour cell to target and hopefully kill.

New therapies are being tested in laboratories and then in clinical trials all over the world. Australia is connected closely to these studies and trials and we have collaborations with many large paediatric centres eg. Saint Jude’s in Memphis, Sick Kids in Toronto.

I came away  feeling  optimistic for the future treatment of paediatric brain cancer, but I  know that it will take several more years, at least, before major breakthroughs will be discovered and even longer before they can be given to children dealing with this disease. Research takes time, patience, perseverance, knock-backs, very special people and loads and loads of money. It’s a complex disease but we are understanding so much more than  even two years ago !

One doctor summed it all up by saying that they all needed to collaborate more and be prepared to change their tried and tested methods to a new approach. He felt that medical doctors needed to upskill to understand the new genomic era and molecular biologists, the genomic experts, need to ask clinicians what the relevant challenges are  from their perpective. Both should work together and not in parallel !

He used a quote, “The light bulb was not invented using a candle.”