Supporting the

Neuroendocrine Cancer Community

Name: Caroline
Neuroendocrine Cancer Site: Colon.

My name is Caroline Griffiths and I’m 56 years old. I live in Port Talbot with my husband and daughter. I also have a son and a beautiful grandson who is 5.

Up until my diagnosis in 2022 I had worked in Banking for 29 years and then most recently as a Finance Manager. My role was very demanding in an ever-expanding company and I had to make the difficult decision to go on long-term sick after trying to work with this condition for over a year and working in between courses of chemo.

Having neuroendocrine cancer is a full-time job and I had to prioritise this.

My journey to diagnosis was quite quick in some respects. From a visit to A&E in March 2022 to a planned Liver resection in April 2022 as it was originally thought I had Hepatocellular carcinoma (HCC).

An MRI in Cardiff a week before surgery showed that in the month I was waiting for the surgery the tumour had spread into my portal vein and the operation was off the cards.

I was referred back to my original consultant who then informed me that after checking scans again whilst they thought that the cancer was contained in the liver, they had found something in the bowel. From there I had a Liver biopsy and Colonoscopy and after a month of waiting, I was finally diagnosed with High-grade stage 4 neuroendocrine cancer.

They tell you not to Google, but I was after any information I could find. I joined various Facebook pages, followed people on Instagram with different stories and found Neuroendocrine Cancer UK and their Support page, and found my lovely South Wales Natter group at Singleton Hospital in Swansea.

I attend the group most months and it is full of such positive people who are in various stages of treatment and timelines since being diagnosed.

Nikie Jervis, the CNS from Neuroendocrine Cancer UK also comes to our meetings and is a font of knowledge for us all.

My treatment to date has been 6 rounds of Capecitabine and Etoposide intravenously in 2022. This was harsh and I lost all my hair and was known as Nanny-No-Hair by my grandson who was just 3 at the time. The treatment gave me some stability, and I had a 3-month break.

In Jan 2023, I started on Cap-tem tablets. I did another 12 months on these with very few side effects and in June 2023, managed to go to Greece and marry my husband. We delayed chemo and had the most wonderful wedding with 40 of our family and friends in the same place we went to 6 years previously.

Last week, I went back to see my oncologist as there were queries on my latest scans. My case went to the MDT and after revisiting all my scans it was deemed that there was slight progression in my liver.

My oncologist has always been keen to get me onto targeted therapy as I have the NTRK gene mutation. It has shown excellent results but he doesn’t have anyone else on the treatment in Swansea. He thinks there are 2 in Cardiff. We are now going on a new journey together and I feel privileged to be given this chance.

The treatment is called Larotrectinib and it’s a tablet to be taken twice a day continuously.

I went for bloods recently, and I am now awaiting a start date so watch this space (as at March 2024).

So between appointments, 3 monthly scans, blood tests, Natter support meetings, other cancer groups, keeping family and friends up to date and so many other admin things, having neuroendocrine cancer is a full-time job.

I do try and live as normal a life as possible and last year managed to have four holidays abroad.

I always go to appointments with my oncologist with my little book of questions and never feel afraid to challenge him.

I need to live my life well with neuroendocrine cancer and will continue to go grab life wherever and whenever I can.