Supporting the

Neuroendocrine Cancer Community

Name: Sarah

Age: 42

Neuroendocrine Cancer Site: MINEN in colon

Sarah’s Story:

I was feeling pretty tired in 2019, but with three young kids I didn’t know too many people who weren’t. When I stopped breastfeeding and felt no better, I had a blood test which revealed I was really anaemic and this was my only symptom.

I had a 10.5cm tumour removed from my colon in September 2019. It was a MINEN (Mixed Neuroendocrine Non-Neuroendocrine Neoplasm) which was 70% neuroendocrine and 30% adenocarcinoma.  As the neuroendocrine part was the largest and considered the most aggressive (my ki67 was 80%), I began adjuvant chemotherapy which targeted that part, so Carboplatin and Etoposide.

I finished chemo in March 2020 and miraculously all my scans since have shown no evidence of disease.

With a lot of fairly depressing literature out there for those with higher ki67s, I feel absolutely flipping delighted to be here, and I am so grateful for the wonderful care I have had along the way.  I am now back at university and training to be a nurse, still with 3 monthly scans to keep me on my toes.

Do you have any useful hints and tips that you would like to share? 

The most important tip I would share is to use Google with caution. The positive stories exist but are not always easy to find, and it is so easy to end up in a gloomy rabbit hole of over-research. Ring Neuroendocrine Cancer UK instead!

Have you used any of the NCUK’s services, if so which? and how have you found them helpful?

I have rung and emailed NCUK for general reassurance and to double check that my treatment is as they would recommend. Even when I haven’t used their services, it has been a great reassurance to know that they are there should I need them.  I couldn’t be more grateful!