I began seeking the medical opinion of various leading professionals around the world. A Neurosurgeon from a hospital in Canada gave this opinion of Abi’s case:
These sorts of situations are often complex, and difficult to comment on based on only a description of the case. It is, however, relatively rare for us to give chemotherapy to a true Cerebellar Pilocytic Astrocytoma that does not have brainstem involvement.
Then an Associate Professor of Paediatrics at an American university hospital gave this opinion:
We would most likely recommend gamma knife radiosurgery for the residual tumour. We have treated several patients with this approach and they have all had long-term disease control. Chemotherapy is unlikely to avoid the need for radiation therapy, although it certainly can delay it. If you were going to go with chemotherapy, I would recommend monthly carboplatin without vincristine as there is no data for the efficacy of vincristine as a single agent.
Finally, a Professor of Paediatrics at another American hospital said the following:
I would recommend using carboplatin as a first-line regimen for your daughter based on the current standard of care and the fact that she is probably too young to swallow pills. Our data in children with recurrent low-grade glioma using temozolomide was underwhelming, although there was disease stability in about 50% of children treated.
My research revealed that the Oncologist was right; there are still no studies that show, for Abi’s tumour type, the long-term efficacy of radiotherapy. In fact, the more I researched, the more the literature seemed to suggest that treatments like chemotherapy and radiotherapy were much more effective against rapidly dividing malignant cancers. Little was known about their long-term effectiveness in treating children with low-grade gliomas. That made me nervous. I was left with the impression that treatment of low-grade gliomas involved little more than guesswork. In fact, given all of the conflicting advice, by the middle of the month, I had made up my mind; I decided that I would go against the Oncologist’s advice. Instead, I wanted to ‘watch and wait’. Abi was bright and happy, so I didn’t want to subject her to the risks of chemotherapy. Besides, I had found that ‘watching and waiting’ was often the preferred course, especially when the tumour is stable, or growing very slowly and the treatment carries more risks than the tumour itself. As a friend of mine once remarked: “Sometimes doing nothing is the wisest course of action.”