Ambassador Profile: Living with Neuroendocrine Cancer and Giving Back, by Kim

By: Neuroendocrine Cancer UK

Posted on: 6 months ago

Ambassador Profile: Living with Neuroendocrine Cancer and Giving Back, by Kim

Trigger Warning.

Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.

Getting your Trinity Audio player ready...

Name: Kim

Neuroendocrine Cancer Site: Small Bowel

Diagnosed: 2024

–

Kim’s Story

Hi. I’m Kim. I live in Sheffield with my husband, Nick. We have two adult children who are currently living their best lives in Canada.

I was diagnosed in December 2024, but looking back, my first symptoms were in 2012. I have small bowel NET (possibly two primaries) with metastases in my mesentry, retro peritoneal, and neck with lymph node involvement, and I’ve been told this is inoperable. I am on Lanreotide every 3 weeks and seem to be managing well with the side effects most of the time.

I was inspired by Kate to become involved with NCUK – Kate and Nikie have been invaluable in their support and advice since I joined this community. I have enjoyed many of the Webinars and online support groups. And I have also attended several of the Manchester Patient Support Groups.

Having been treated for breast cancer in the past, I know what excellent care looks like. I want to help raise awareness of NET and NEC and work towards improvement in care and services available to neuroendocrine cancer patients, in the same way as they are with other cancers.

This year, with help and support from Kate, fellow patient, Dave Corbin, and I have started an in-person support group at Sheffield NET Centre of Excellence. So far, we’ve held two meetings, and I look forward to expanding our group to support and help each other.

During a most difficult and confusing time, it’s really important to me to try to help other patients have a positive experience in their overall care. And I’m spreading the word amongst family and friends (and anyone willing to listen) to try to raise awareness of neuroendocrine cancer as far and wide as possible.

Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.

Do you have a story to share?

Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.

If you have a story to share, we would love to hear from you.

Share your story
Share your story

We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.

By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.

Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.

Please complete the form below to share your story.

A note about reading and listening to personal stories

Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.

Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.

Support and next steps

You do not have to face this alone. Support is here when you are ready.

Disclaimer

The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.


Read more stories from people 
affected by neuroendocrine cancer, 
sharing their journeys, hopes and advice.

In this episode, Lisa is joined by Dave and Stephanie, parents to six-year-old Elliott and three-year-old Oliver. Dave was diagnosed with neuroendocrine cancer just one month ...






Published: 4 days ago

By Beth Chesser