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

Dan, VIC

I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

Karen, SA

My days and months have been spending time and money on and in medical appointments, tests and scans, rooms, clinics and medications and listening to profoundly specialised medical jargon, which is not always explained fully and sometimes assumed to be common knowledge,

Roxanne, ACT

The hardest thing has been actually finding out what was wrong with me. No-one could tell me for months and the toll it took on me and my family was devastating. The lack of knowledge of NETs amongst the medical fraternity amazed me. Still a long way to go.

Judy, SA

The results showed 15 tumours in my liver. Within days I had a biopsy, which confirmed it was a neuroendocrine tumour. I had never heard of this type of cancer prior to being diagnosed.