What does refractory disease mean? 

Refractory disease means that the neuroblastoma has not responded well to standard frontline treatment. Unlike relapsed neuroblastoma, where the cancer returns after being successfully treated, refractory disease means the cancer was resistant to treatment from the start or became resistant during initial therapy. 

How is refractory disease identified?

Refractory disease is usually found during routine scans while your child is still having their first course of treatment. Doctors may see that the cancer is not shrinking or responding as hoped. 

Some children may have stable disease (where the cancer does not grow or shrink), while others may have progressive disease (where the cancer continues to grow despite treatment). 

What does this mean for treatment? 

Refractory neuroblastoma can be more difficult to treat, but there are often other treatment options to consider. These may include different types of chemotherapy, radiotherapy, surgery, immunotherapy, or clinical trials of new treatments. 

The choice of treatment will depend on your child’s previous therapies, overall health, and how the cancer is behaving.

Hearing that your child’s cancer is not responding to treatment can be very upsetting and worrying. It’s completely normal to have lots of questions and concerns.

For further trusted information about refractory neuroblastoma, you may wish to read the guide from CCLG below.

CCLG Relapse and Refractory Neuroblastoma Guide