I’m 29 now, and it took about four to five years to finally get my diagnosis. During that time, I saw multiple GPs and specialists, and while everyone was trying to help, it became clear that most doctors simply do not have the resources or awareness when it comes to neuroendocrine cancer. That is why organisations like NeuroEndocrine Cancer Australia are so important. The information and resources they provide for both patients and doctors make a real difference.
Before I was diagnosed, I had ongoing medical issues including bowel obstructions and endometriosis, which made it easy to dismiss my symptoms. But I started experiencing rashes across my chest, hot flushes, shortness of breath and heart palpitations. Something did not feel right.
A CT scan eventually showed a small mass, and the words “neuroendocrine tumour?” were written in the notes. Even then, getting answers was not straightforward. I was told at one point it could not be a NET because it did not show on MRI. I had to advocate strongly for myself and push for the right testing, including a specialised PET scan. That scan finally confirmed the diagnosis.
Being diagnosed in my mid-20s was frightening. I did not know what life would look like or what I would encounter moving forward. Most patients I came across were in their 40s or 50s, often diagnosed at stage four or later. I was diagnosed at stage one with a low-grade tumour. In that sense, I understand how fortunate I am. Being diagnosed young meant I could access proper treatment early.
This journey has not been easy, but I am grateful it was caught when it was. If there is one thing I have learned, it is to trust your body and keep pushing for answers. Early diagnosis changes everything.
