Hello and welcome to May's edition of Loop!

Loop is a monthly newsletter from Neuroendocrine Cancer UK which is dedicated to bringing you the latest updates and insights related to neuroendocrine cancer.

Have Your Say in Future Neuroendocrine Cancer Research

The second national survey for the JLA Neuroendocrine Cancer Priority Setting Partnership is now open, giving patients, carers and healthcare professionals the opportunity to help shape future research priorities in neuroendocrine cancer. Click here to read more.

Upcoming Webinar: 'Diet & Nutrition'

Wednesday 24th June 2026

Guest speaker Niamh Brennan, Specialist Gastroenterology, Hepatology and HPB Dietitian at King’s College Hospital NHS Foundation Trust, will explore diet and nutrition for people affected by neuroendocrine cancer, including tumour effects, hormone syndromes, treatment side-effects, nutrient absorption, appetite changes and conflicting advice.

New Hastings Patient Support Group

Meet Holly, your new Hastings PSG facilitator as she sets up the room ready to greet new members. It takes time and effort to set up a brand new patient support group and we are very grateful to those who volunteer to do this in our communities. Some groups are CNS-led inside a Centre of Excellence, but we understand the importance of peer to peer support and know how valuable these meetings can be. 

CLICK HERE to view all our Patient Support Groups, online and in-person.

Sheffield Patient Support Group Goes from Strength to Strength!

New Sheffield PSG (Patient Support Group) goes from strength to strength as group facilitators, Kim Hoare and David Corbin, move the group to a new venue, kindly supplied by David's employer free of charge. Guess who it is?

All Patient Support Groups dates and times can be found HERE

Manchester Support Group Welcomes Dr Saf Adam for Neuroendocrine Cancer Q&A Session

Dr Saf Adam, consultant endocrinologist at The Christie NHS Foundation Trust came to talk to Manchester Patient Support Group this month. In good spirits, the group of 30 patients, were able to grill Dr Adam on a range of topics including blood sugar issues, monthly injections, genetic testing, accessing new treatments, how his role impacts neuroendocrine cancer patients, the challenges around scan report interpretations and even dietary challenges after surgery.

Thanks Dr Adam!

I Have a Hospital Appointment - A Poem by Donna

By Donna Marklew

In this powerful and deeply personal poem, Donna Marklew captures the emotional weight that can sit behind the simple words, “I have a hospital appointment.” From anxiety and preparation to trying to protect family life while carrying fear internally, her words reflect the often unseen reality of living with neuroendocrine cancer.

I have a hospital appointment on Friday. 

It sounds pretty simple but behind the scenes for someone with neuroendocrine cancer, this can mean a lot more. 

I had a call in April with an update following an MDT discussion about my case. 

I’ve had to wait until today to meet my consultant. 

This wait has been anxiety provoking and really takes its toll. 

In preparation for my appointment, so much has gone into it.  

For me, this process has included: 

• Get your own team together, to come with you and prep them with the things we need to discuss while we are there 

• Write a list of questions and what your goals are for the appointment 

• Call the Neuroendocrine Cancer UK Helpline to talk it all through again. I cannot be more grateful for the support from Nikie and Kate 

• Make sure you can get across to the Consultant that you do not want to hear about prognosis! 

And lastly, what am I going to wear? 

Weird and trivial? No. I want my Dr to know that my life is worth saving and I want to be memorable so that my Dr can recall who I am. 

Managing myself in the run up, trying to suppress my anxiety so that I can be the best and clearest version of myself when I am in my appointment. 

Even … should I take diazepam to calm me down? 

The list goes on … and in the meantime, I keep it all inside and together to keep my children and my job going. 

So. I have a hospital appointment today. 

Not just 5 simple words … 

I’m exhausted before I’ve even left the house. 

Meet our new Health & Well-Being Specialist Cancer Nurses, Holly & Erica!

We’re so happy to introduce the newest members of our nursing team, Erica and Holly. Both bring a huge amount of experience, compassion, and dedication from their years working within the NHS, alongside a genuine passion for supporting people affected by cancer. We’re incredibly excited to welcome them to Neuroendocrine Cancer UK and know they will be a wonderful support to our community. Click here to read more about them both.

Write your Will for free! 

Neuroendocrine Cancer UK provides support to all those affected by neuroendocrine cancer as well as education, resources and information for healthcare professionals. From providing a helpline and counselling services for patients, to raising awareness about this cancer that is often missed, misdiagnosed and misunderstood, we put patients, families and carers at the heart of everything that we do. 

Maybe you or someone that you love has been supported by our charity? We are fortunate that much of our support comes from people, or the loved ones of people, who have received support from us. 

By choosing to leave a gift to us in your Will, you will leave a lasting legacy that will change the lives of others. 

We have teamed up with Farewill, an award-winning Will writing provider, to offer our supporters the opportunity to write their Will for free.

Although there’s no obligation to leave a gift to Neuroendocrine Cancer UK if you use the free Will writing service, anything that you may decide to leave to us will be gratefully received.

If you are interested in writing your Will for free please click on the button below.

An evening of support, awareness and generosity in Edinburgh 

We’re incredibly grateful to The Edinburgh Institute of Insurance & Financial Planning for supporting Neuroendocrine Cancer UK at their annual dinner in Edinburgh. The evening raised more than £2,000 for NCUK, helped shine a light on neuroendocrine cancer, and inspired further fundraising support through the Edinburgh Kiltwalk.

Get involved 

If you or your organisation would like to support NCUK in this way, we would love to hear from you. Please contact hannah@nc-uk.org to discuss your ideas. 

If you’re interested in taking part in the Edinburgh Kiltwalk or any of our other challenge events, please contact Craig at fundraising@nc-uk.org. 

If you’re not doing so already, please consider making a monthly donation… 

We are so grateful to all the people who have committed to making a regular donation recently. This is one of the most effective ways to support our work.

Regular giving allows us to plan ahead, expand our services, and provide ongoing support to people when they need it the most. Even a small monthly contribution can make a real difference to the lives of people affected by neuroendocrine cancer. 

Did you know? We receive no government funding, no funding from larger cancer charities, and no money from the NHS. We rely entirely on the generosity of people like you, our community, to keep going. 

Please watch our video below to see the difference that you can make:

Neuroendocrine Cancer Support - Funded by You, for Everyone Who Needs It 

You can make a huge difference.

A monthly donation is one of the best ways to ensure that we can continue to provide support to people affected by neuroendocrine cancer. Regular donations also allow us to plan for the future and to expand our services. 

£10 a month – you’ll help to fund monthly webinars and resources to help patients better understand their disease. 

£15 a month – you’ll help us to invest in our helpline, providing much needed support to rising numbers of patients and families coping with diagnosis, treatment or emotional distress. 

£25 a month – you’ll help us to expand our counselling services, so that we can continue to provide support and care for patients and their loved ones at a time when they need us the most. 

£50 a month – you’ll help us to invest in research projects that are designed to improve outcomes in neuroendocrine cancer. 

Thank you!

Fundraise for Us and Support the Neuroendocrine Cancer Community

We’re incredibly grateful for our amazing and supportive community. we want to extend our heartfelt thanks to everyone who supports Neuroendocrine Cancer UK. Your dedication, passion, and creativity make an incredible difference.

Did you know there are so many ways to get involved? 

Visit our fundraising page below to explore the possibilities and start planning your next adventure today!