Survival rates are variable

It is very difficult to say what the average survival rate for a PNET brain tumour is. This is because the tumours are so diverse. Also, we are now experiencing a major shift in the way that PNET brain tumours are being diagnosed. This is likely to have a significant impact on treatments and survival rates.

In the past, PNET brain tumours were regarded as the same, however research and molecular profiling has shown that there are 4 very different sub-types. Research has also shown that a vast majority of tumours thought to be PNETs in the past are in fact other forms of brain tumours when analysed through more sophisticated molecular studies. These tumours are likely to have different treatment and survival outcome.

Further research is currently being undertaken on the four PNET sub-types to identify which treatments provide the best outcome for each sub-type and the respective survival rates.

Given that not all PNETs are the same, all that can be said at this stage is that some PNET’s have a much higher survival rate than others.

Historically, and prior to the identification of the sub-types, the best survival rate was regarded as 60% for those who undertake radiation.
Radiation tends to be avoided in very young children. This reduces their survival rate to approximately 20%-30%.

In sum, survivor rates very much depend on the type of PNET and where it is located.

A great deal of caution needs to be exercised in drawing conclusions about the survivor rate for any particular PNET brain tumour whilst the diagnosis process is undergoing such extensive change and whilst research is still being carried out to understand PNETs better.

Much is currently being learned about PNETs and there is certainly hope.

Meet long term survivor Julie Greisinger

Julie was diagnosed with PNET brain cancer as a baby. Her parents were told she would not survive past the age of two. Julie is now 26 years old and a survivor. She has some mild disabilities like short-term memory loss. But through all her adversities, Julie completed college with a Medical Assistant degree. She had to work harder in her studies but with dedication, remained on the Deans list.

You can read about more long term survivors of PNET in our PNET Stories, ‘Stories of Hope’ Page:

Stories of Hope