Researching Neuroendocrine tumours: The questions on my mind

Following the conversation with Dr Lee, we looked at NeuroEndocrine Cancer Australia website for more information. We had lots of questions and thoughts about what this type of tumour could possibly be. This included what questions to ask of specialists going forward. The most important questions on top of our mind were:

1. What type of NET do I have?

2. Where is the NET located? Has it spread to other parts of my body? 

3. What is the grade and staging of my NET? What does this mean? 

4. Based on my grade and staging, what is my prognosis? 

5. What is the expected timeline for my management plan? Do I need to be treated immediately? 

6. Are there any relevant clinical trials for my NET? 

These questions can be very confronting, especially the one about prognosis. The fear of the unknown loomed large; I couldn’t shake the thought of what it might mean for my future.

There was some further information I found about neuroendocrine tumours on cancer.org.au. When you look at the section ‘diagnosis’, I’ve had blood tests, urine tests, endoscopy, CT scan, MRI, PET scan, with a biopsy soon to come. The only tests I haven’t had are bronchoscopy and echocardiogram. Looking at the list of tests I had undergone was a stark reminder of the whirlwind I had been through - each test representing another step in the search for answers, but also adding to the weight of uncertainty.

As we gathered this information, I felt a mix of fear and determination. Understanding my condition was the first step in taking control of my health journey, and I was ready to face whatever came next.  

More information: Questions to ask during your consultation | NeuroEndocrine Cancer Australia

More information: NeuroEndocrine Cancer Australia

More information: Neuroendocrine tumours | Cancer Council