Patient Stories

My journey started when I was in my early teens. At 14 my sister and myself were sent for genetic testing to see if we carried the MEN1 gene as my mother was told there was a 50/50 chance that this could have been passed onto us. Both my sister and I both inherited MEN1.

Although educating healthcare professionals and the general public about the disease is too late for me. I advocate for this to happen so that no future patient has to go through what has happened to me.

What I have learned is appropriate referral is so important. For me a partial diagnosis came 3 years after my 1st hypertensive crisis. Full diagnosis and treatment took another 4 years.

Having a family history of cancer, both mother and father, my own diagnosis of NETs probably shouldn’t have taken me by surprise but it did.

I have the same cancer that singer, and queen of soul, Aretha Franklin and Apple CEO, Steve Jobs had, neuroendocrine cancer (NETs).

After almost 5 years of misdiagnoses, Kristen was diagnosed with NETs at only 43 years of age. Kristen’s initial diagnosis was grim, thankfully a second opinion and access to PRRT treatment successfully reduced her tumour and gave Kristen a second chance at life.

On the 8th of October 2019 I found out I was expecting my second child. Less than two weeks later I was rushed in for emergency surgery for appendicitis. Two weeks after the surgery I was diagnosed with a NET inside my removed appendix

I had an ultrasound for an unrelated medical condition. The radiographer identified a differential diagnosis… a neuroendocrine tumour (NETs).