Kim Verlin

What impact has NEC had on your life?

I was diagnosed with high grade Neuroendocrine Carcinoma with a lung primary and brain mets the Friday before Christmas 2016 (NEC is a type of very fast growing neuroendocrine tumour, grade 3b). My prognosis was six months. I had to quit my job on the spot – I had to start whole brain radiation immediately, followed by 8 rounds of chemo. I’m not allowed to drive because of the risk that I have a seizure. I have a lot of fatigue. The silver lining is that I’ve had a lot of time to travel and spend time making memories with my loved ones.

 What has been most helpful to you in your NEC experience?

The unwavering support of my husband, and Kate, our fabulous nurse. It’s a complicated illness that impacts everyone in a different way.

What advice would you give to a newly diagnosed patient?

  • Get copies of all your scans and medical reports as this will help with your doctors as well as insurance 
  • There are no stupid questions
  • Take everything one day at a time

 

(see pic of me below at the Peter Mac resort)

Patient Stories

Kristen Leknius

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.

Demi Gough

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

Michael Doyle

The more I read and understood about PRRT I just kept thinking why aren’t I receiving this treatment? I have inoperable and incurable NETs so I wanted something to give me hope.

Mark Camilleri

When I got diagnosed with NETs it literally flipped my world upside down. I went from doing volunteer work, playing football, working 6 days a week and playing on my cars.