A court in NSW has allowed oncologists to continue with chemotherapy for a child to prevent recurrence of retinoblastoma over the objections of his parents who believed it would cause excessive toxicity and discomfort.

In a case brought by the Sydney Children’s Hospital at the Supreme Court of NSW on 10 July, doctors sought an urgent order to commence with six cycles of chemotherapy for a boy aged two years and eight months who had been successfully treated for bilateral retinoblastoma and currently had no detectable tumours in his eyes.

The doctors made a strong recommendation for additional treatment on the basis that he might have some microscopic residual cancer cells. There would be only a 10% risk of a distant recurrence of the boy’s cancer if he received the proposed chemotherapy, they said, compared to a 40% risk without treatment.

The judge noted that the parents were grateful for the medical care their child had received, but they were concerned that he had somehow become resistant to chemotherapy and the proposed treatment would be futile and cause considerable harm and distress to their child.

They also objected to what they believed was the “off label” use of drugs in chemotherapy as the agents were not approved by the TGA for use in children.

They described the distressing experience of their son having to undergo numerous cycles of highly toxic chemotherapy and cryotherapy that had apparently failed to control the growth of new tumours. The boy had subsequently required to have his left eye removed as there was evidence of locally extensive disease, they said.

But all the oncologists involved – including a ‘second opinion’ special interest group panel – strongly recommended continuing with the proposed treatment to prevent spread of any microscopic residual cancerous cells to the remaining eye. They noted that the child had a genetic predisposition to develop new tumours because of a familial inheritable form of the disease.

The clinicians said that while the chemotherapy agents such as vincristine, carboplatin and etoposide had toxic side effects, the boy would recover from these and his long term chance of cure  was up to 90% if he also received other treatment such as bone marrow harvesting.

The judge said he sympathised with the emotional turmoil of the parents but ruled that the treatment should go ahead as it was in the best interests of the child.

“The choice is between some very real pain in the short term – which, I hasten to add, I do not in any way underestimate – to avoid the real and not insignificant prospect of something far worse in the long term,” he said.

The treatment would also minimise the significant risk of a far more intrusive treatment later with considerably less prospects of success, he added.