Quarterly Newsletter Winter 2024 - December Issue
Introducing our Hero Award Winners 2024!
Take a peak inside to find out who won in each of the categories!
HERO AWARDS The Neuroendocrine Cancer UK 2024
www.neuroendocrinecancer.org.uk Registered Charity Number: 1092386
Contents
WELCOME
NEWS
FUNDRAISING
AWARENESS
ADVOCACY
EDUCATION
SUPPORT
STORIES & EXPERIENCES
RESEARCH
www.neuroendocrinecancer.org.uk
Contact details
We’re here to assist you in any way we can. Whether you have questions about neuroendocrine cancer, need support, want to get involved with our activities, or have any other enquiries, we’re ready to help. Please feel free to reach out to us using the contact information provided below. We look forward to hearing from you and offering our assistance.
Helpline - Please see the News page for Christmas hours
0800 434 6476 Tuesday – Thursday (Excluding Bank Holidays) 10:00am – 4:00pm
Speak confidentially with our support services team for information and advice through our helpline.
Please note – The Helpline is not a general enquiry or emergency line. If you require urgent medical assistance, please contact emergency services and inform your specialist team.
Other Enquiries 01926 883 487 Monday – Thursday (Excluding Bank Holidays) 9:00am – 3:00pm
For general enquiries, or to contact a member of our administration or comms teams.
Alternatively, you can use our contact form to get in touch: CLICK HERE
www.neuroendocrinecancer.org.uk
Welcome to our Christmas Newsletter!
Dear Friends and Supporters,
As the festive season draws near, we are filled with such gratitude for the incredible support and generosity you have shown throughout the year. Your contributions have made a profound difference in the lives of those affected by neuroendocrine cancer, and we cannot thank you enough. Within the newsletter you will see snippets of our activity in the last few months but please do go and take a look at all the newsletters so you can get a flavour of what has been happening in your community and the impact of our work. I would also like to extend our heartfelt thanks to our dedicated team. Their unwavering commitment and hard work have been instrumental in driving our mission forward. We are incredibly proud of their efforts and achievements.
It has been 5 years since we became Neuroendocrine Cancer UK, and that change has also brought about many strategic changes within the organisation.
2025 brings with it the start of a new 5-year strategy that has been 6 months in development. We have some ambitious new plans, but importantly we also have a focus on the development of the building blocks we have already laid down.
NHS, the National Cancer Research Institution (NCRI) and the National Cancer Registration and Analysis Service (NCRAS) 1. ENETs Centres of Excellence and expert neuroendocrine multidisciplinary teams 2. Medical and nursing societies 3. Advocacy organisations such as Cancer 52 and the International Neuroendocrine Cancer Alliance (INCA) 4. Political/ Policy agencies both in the UK, Europe and Internationally 5. Pharmaceutical industry 6. The MRT Consortium 7. Some examples are further work on the Ideal Patient Pathway, further development of our Spotlight Campaign including a new education hub for HCPs, launch of our new patient web guides and monthly educational webinars, a face- to-face educational event and continued collaboration on various projects to improve the collation of important data, understanding and awareness about neuroendocrine cancers. Some of these collaborations include:
Looking ahead to the next 5 years, the adaptations to our strategic approach will allow us to drive forward with our 4 main priorities:
Empower and support more people affected by neuroendocrine cancer
Educate a wider audience with reliable, accurate, and data driven information
Effectively raise awareness of neuroendocrine cancer to a defined and relevant audience
Invest in research, through funding of a balanced & broad research programme
We were founded by patients, families & HCP’s, therefore we will continue to listen and respond to the needs of our community as a primary objective; the voice of those affected directly by neuroendocrine cancer will remain at the heart of any decisions around our future.
This festive season, we celebrate the spirit of giving and the strength of our community. Together, we have achieved remarkable milestones, and with your continued support, we look forward to making even greater strides in the fight against neuroendocrine cancer. May this holiday season bring you some joy, peace, and the warmth of loved ones. I also hope there is an opportunity for rest! It can be a challenging time of year for many and with this in mind, we recently held a webinar and recorded a podcast both titled “Fairy lights, Flat Batteries”: both available shortly, and we hope will offer some support for those who may need it.
From all of us at Neuroendocrine Cancer UK, thank you.
Catherine Bouvier Ellis, CEO Cathy
News
Christmas Helpline Opening Hours
Helpline tel no 0800 434 6476
In order to allow the Neuroendocrine Cancer UK staff some much needed rest over the Christmas period as well as some vital training, here are December’s helpline opening hours:
Tues 17th December - Closed Tues 24th - Thurs 26th December - Closed Tues 31st December - Thurs 2nd January - Closed
Re-opens usual hours on Tuesday 7th January 2025
Shape the future of Neuroendocrine Cancer UK
Thank you so much to the almost 1000 of you who completed our survey to enable us to continue to meet your needs and support you in the way you want to be supported. Your feedback has been so helpful. We really appreciate your time, thank you for your support.
www.neuroendocrinecancer.org.uk
News
Ambassadors Update
Our ambassadors play a crucial role in advancing Neuroendocrine Cancer UK’s mission. They influence our website content by sharing valuable hints and tips for hospital visits, questions to ask, and personal experiences through stories, videos, and podcasts. They actively raise awareness by sharing their experiences, speaking at medical conferences and advisory boards to amplify the patient voice as well as contribute to the professional development of healthcare providers, co- design and review patient resources, and both facilitate and participate in our support groups. Our ambassadors also represent us at events, staff our stands at conferences, and take part in fundraising initiatives like the Cakes for a Cause, Birthday pledges, Glasgow Kiltwalk and Craig’s Firewalk Challenge.
We would like to thank our Ambassadors for their commitment in working alongside us in everything we do, and for sharing their lived experiences .
Caroline
Simon
We would especially like to extend our sincerest gratitude to Caroline and Simon, as they step down from the group, for their time and generosity as NCUK Ambassadors – we thank you and wish you all the very best in health and happiness for the future. Never forget the difference you make and never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. If you’re passionate about making a difference, have a personal connection to neuroendocrine cancer, and are eager to raise awareness and funds, you can apply to join our dedicated ambassador team!
Select here to apply
www.neuroendocrinecancer.org.uk
News
PERT Shortage Update December 2024 Our latest update on PERT
We have been working with our community and fellow charities to continue to seek solutions to current PERT supply issues. Our collaborative working group of charities and patient organisations continues to meet monthly and firmly believes that:
“Patients cannot “go without” this medication. This can have significant adverse health effects.” (Philips et al. 2024).
CLICK HERE for this month’s update on our website.
PLEASE NOTE: Re-launch of PERT Survey is planned for January 2025. Please never doubt that your voice is heard – and that we are here to help.
We would once again like to thank those who have completed our PERT survey earlier in the year.
This provided voices and experiences to available numbers and figures, allowing us to illustrate how important this medication is and how vital addressing current shortages are. We plan to re-open the survey In January: and would ask those who have previously completed it to please do so again: as this may help us to see if there has been a change – for better or worse – so that we can further concentrate our focus and efforts. We would also welcome input from those, who take PERT, who did not take part in the earlier survey, even if you have had no difficulty in PERT supply! We are rather concerned that lower numbers of calls regarding this problem does not necessarily mean an improvement in supply.
We will add a link to the survey on our website in January and let you know when it is officially open via our News page and SM platforms.
www.neuroendocrinecancer.org.uk
If you have any news you’d like to share with us – whether it’s about a fundraiser you’re organising or neuroendocrine cancer in the news, please let us know by emailing us: hello@nc-uk.org
News
NEUROENDOCRINE LIFE ALLIANCE
Neuroendocrine Life Alliance
Neuroendocrine Cancer UK is thrilled to share news of an exciting collaboration with AMEND
As an alliance, Neuroendocrine Cancer UK and AMEND aim to harness existing connections to address common challenges by sharing knowledge and resources for the good of neuroendocrine communities as well as fundraise for collaborative projects. You will have to wait until 2025 for the formal launch of this collaboration but in the meantime, please enjoy this short video from Cathy and Jo on World Neuroendocrine Cancer Day a few weeks ago:
www.neuroendocrinecancer.org.uk
Fundraising
Daily Dip 4 Dave - Now an Annual Event! Since October 2023, Ruth has taken on a remarkable challenge: a daily dip in the cold sea, every single day, in honour of her husband, Dave, who was diagnosed with neuroendocrine cancer.
Introducing the Annual Daily Dip 4 Dave Challenge!
After a hugely successful 12th October event where hundreds of people all over the world celebrated 365 days of dipping in cold water for neuroendocrine cancer, Ruth and Neuroendocrine Cancer UK are excited to announce that this cold water challenge will now become an annual event! Each October, join us as we plunge into cold water to raise awareness and support for neuroendocrine cancer research. Inspired by Ruth’s journey and her love for Dave, this challenge welcomes everyone, whether it’s a dip in the sea, a lake, or even a cold shower. Join from anywhere in the world and help us make a powerful impact for those living with this uncommon cancer.
Visit our website to find out how you can get involved in Daily Dip 4 Dave in 2025! CLICK HERE
www.neuroendocrinecancer.org.uk
Fundraising
An update from our Community Fundraising Co-ordinator, Craig:
The last few months has been a busy end to the fundraising year with so many great events and fundraising challenges. Firstly, we had Saba Khan who chose to fly out and take part in the Chicago Marathon on the 13th of October. Unfortunately, Saba lost her sister-in-law Azmat (Azi) to neuroendocrine cancer and wanted to take on this challenge in her memory. She set the bar high with a target of £5000 and I’m pleased to say with her determination not only did she smash the marathon but raised and amazing £5,937.15!
Elizabeth was diagnosed with neuroendocrine cancer August 2021. She said “thanks to the support I received from Neuroendocrine Cancer UK I decided it was time to give something back.” So with a healthy fear of heights, she decided to take on a glider challenge, soaring through the sky to support our cause. Elizabeth worked hard to raise awareness and smashed her target by raising £9040.03 and is still trying to reach her £10,000 target. She even managed to create some awareness along the way with a story in her local press!
CLICK HERE to read.
www.neuroendocrinecancer.org.uk
Yolandi Engelbrecht was booked to skydive for Neuroendocrine Cancer UK, unfortunately due to medical reasons she needed to pull out. So up stepped her brave husband Werner to jump out the plane for her. He had a few false starts due to the weather, but on the 17th of November he was able to complete his tandem jump. Werner proudly shared his video with the community and said to the team on the day “the best bit was when the parachute opened”. Thank you Werner for supporting us and raising £850.50 in donations!
Finally, we have our youngest fundraiser Harry at 5 years old. Harry told everyone that his mum Abigail had Neuroendocrine Cancer, and he wanted to do some challenges to support Neuroendocrine Cancer UK. He set out showing friends, family and the community his challenges which ranged from Reading 10 books, Gymnastics, running and swimming challenges all finished off with a performance for family. Harry met every challenge with such fun and energy and just a bit of cuteness. Everyone at Neuroendocrine Cancer UK was so proud of his achievements. He managed to raise an amazing £1,393.55!
www.neuroendocrinecancer.org.uk
Fundraising
Neuroendocrine Cancer UK are solely reliant on the generosity of members of our community to fund our ongoing work, to push for more awareness and better support for neuroendocrine cancer patients. We do not receive any government funding, NHS funding or grants from the larger cancer charities. We are grateful for our wonderful fundraisers each year and touched when our community supports us. The rise in patients using our services has got to a point that we need your support. Those in the community that are unable to fundraise but still want to support us can follow the link below to set up a monthly donation.
Once you have clicked on the donate button, please follow instructions to set up a monthly payment. Even the price of a coffee each month helps us to continue our vital work.
Plans are already underway for 2025 and we hope to announce our funded NCUK places at events around the UK as soon as possible.
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Our 2024 Hero Award Winners! With over 100 nominations, 19 finalists, almost 2000 votes and now 6 winners! We are so grateful to the neuroendocrine cancer community for participating in this inaugural Hero Awards and we hope it will go from strength to strength over the coming years so that we can continue to celebrate all those affected by neuroendocrine cancer and increase awareness of this disease. Although we only have 6 winners, we would like to add that it was such an honour to read through each and every nomination. Thank you to our judges and to all of you, our community, for taking part. So, without further ado, here are our winners...
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Congratulations, Alison!
Category: Living with neuroendocrine cancer
Here’s a snippet from Alison’s nomination:
“The nomination is for my mum. My mum is one of the bravest and strongest people I’ve ever met and she is also my bestest friend...My mum was diagnosed with neuroendocrine cancer in 2021.
Since then she has undergone multiple surgeries to fight this disease. Although it
hasn’t been easy, my mum takes everything in her stride with such
determination and strength that I admire so much. She proves again and again how she can and will fight this disease with so much bravery...” If you would like to read the nomination in full, please CLICK HERE
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Congratulations, Bruce Family!
Category: Fundraiser
Here’s a snippet from their nomination:
“The Bruce family planned, organised and put into action 3 x fundraising events involving friends and family. These were a 3 peaks challenge over 3 days in May 2024 involving 15 + persons. A multiple team soccer tournament involving numerous teams in June 2024 and a Golf tournament in August 2024. These three events with raffles and auctions have raised over £54,000 for the Neuroendocrine Charity”.
If you would like to read the nomination in full, please CLICK HERE
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Congratulations, Jay T!
Category: Family, Friends, Supporter
Here’s a snippet from Jay’s nomination:
“Jay and I met during lockdown...He comforts me every year on the anniversary of my diagnosis as I relive those early days. He is with me for every appointment, pushing through his own fears travelling on bus and train to reach the nearest hospital all the while still adjusting to his new normal.”
If you would like to read the nomination in full, please CLICK HERE
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Congratulations, Anthony!
Category: Neuroendocrine Cancer Nurse
Here’s a snippet from Anthony’s nomination:
“...Aside from the disparity in patients not having access to a dedicated CNS (unlike patients with other cancers), Anthony recognised the limited awareness of the diagnosis, particularly the risk of Carcinoid Crisis in patients having invasive diagnostic tests or surgery. He also understood that, unlike patients with other cancers, patients with low grade NET who have a good prognosis are at risk of increasing complications from their disease, such as pancreatic insufficiency, diabetes or carcinoid heart disease...”
If you would like to read the nomination in full, please CLICK HERE
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Congratulations, Professor Caplin!
Category: Doctor / Surgeon
Here’s a snippet from Prof Caplin’s nomination:
“I am under his care since 2016. Being under his care makes me feel safe and
confident to handle any health challenges relating to my NETs.
He has helped me to live an independent life since Jan 2016. He is approachable and listens to you. In the past 8 years due to my personal circumstances I had to move away from his care at RFH, but I overcame my hurdles and got back to RFH because of Prof. Caplin and his team.”
If you would like to read the nomination in full, please CLICK HERE
www.neuroendocrinecancer.org.uk
HERO AWARDS The Neuroendocrine Cancer UK 2024
Congratulations, Nuclear Medicine Department at The Christie!
Category: Allied Health Professional
Here’s a snippet from their nomination:
“Whilst Julie was undergoing her PRRT treatment , everyone in Prakash’s department was exceptional in the care provided, even in less than adequate conditions at times, with the facilities on occasion inadequate and stretched to break point. The personal care he put in with individual patients during treatment sessions made those patients feel particularly valued and cared for.”
If you would like to read the nomination in full, please CLICK HERE
www.neuroendocrinecancer.org.uk
Awareness
Centres of Excellence Outreach
Neuroendocrine cancer Centres of Excellence outreach
We will be visiting the neuroendocrine cancer Centres of Excellence over the coming months to highlight the full range of services we offer and encouraging them to let their patients know about us. Please see the informational flyer below and contact comms@nc-uk.org if you think you can help with this initiative.
www.neuroendocrinecancer.org.uk
Awareness
Spotlight on Neuroendocrine Cancer Update - December 2024
The ‘spotlight on neuroendocrine cancer’ campaign aims to raise awareness of neuroendocrine cancer among non-NC specialist healthcare professionals. The campaign is in collaboration with the UK and Ireland Neuroendocrine Tumour Society (UKINETS).
GP podcast on neuroendocrine cancer for Primary Care Society of Gastroenterology (PCSG)
We have been working with the Primary Care Society of Gastroenterology and are delighted that they have interviewed Dr David Bartlet, a retired GP, neuroendocrine cancer patient and trustee of Neuroendocrine Cancer UK on their INGEST podcast. This is the second podcast they have done on neuroendocrine cancer, earlier this year, Prof Mark Pritchard, consultant gastroenterologist and chair of the UK & Ireland Neuroendocrine Tumour Society (UKINETS) discussed what GPs should know about the disease. This will either be released this month or January next year, we will keep you posted! These podcasts are a wonderful opportunity to raise awareness of neuroendocrine cancer among GPs with the aim of supporting GPs to be able to recognise potential neuroendocrine cancer patients earlier and so enable those patients to be diagnosed faster and more accurately.
An overview of neuroendocrine cancer for healthcare professionals’ series
To enable us to raise awareness of neuroendocrine cancer for healthcare professionals we are creating a series of overviews for different HCP disciplines. The aim of these is to act as a bite-size, practical educational aid to support HCPs to suspect and know how to support potential neuroendocrine cancer patients. To date we have created 6 overviews’: for GPs, gastroenterologists, endocrinologists, oncologists, general surgeons and a general one for all HCPs. We will be adding to this series next year.
www.neuroendocrinecancer.org.uk
Awareness
Neuroendocrine cancer awareness videos for HCPs
Neuroendocrine cancer, like many less common cancers, is not included in the syllabus at many medical schools. We would like to increase awareness of the disease among HCPs and to this end we have created 3 patient case study videos to raise awareness of neuroendocrine cancer. The format is a Q&A between a patient and a student. In the videos those with the disease discuss their symptoms and journey to diagnosis. These have just been added to our website and we will follow up with a wider dissemination campaign in 2025. Thank you so much to those involved.
Dissemination of our educational and awareness materials
It is so important not just to create the materials we do but to ensure that they go out to the relevant healthcare professionals. Please support us to spread the word by directing your medical team to the HCP page on the website www.neuroendocrinecancer.org/hcps
www.neuroendocrinecancer.org.uk
Advocacy
Advocacy in Practice Raising awareness of neuroendocrine cancer in the press. We were delighted to work with Robert Fisk at the Daily Express to raise awareness of neuroendocrine cancer through 2 articles:
‘Urgent action needed to improve the survival rate of people with rare cancers, campaigners say’ & ‘Doctors put my symptoms down to allergy – now I’ve got incurable cancer’. Many thanks to Dave Howard for sharing his experience.
Read full story here: Cancer campaigners call for urgent action to address treatment gaps | UK | News | Express.co.uk
After the article, Dave rang us to say that and an old friend, Rob Owens, had reached out to him. Rob now works as a parliamentary secretary for Sefton MP Bill Esterson. They wanted to know how they could help. And we're delighted to report that Mr Esterston has now taken further steps to support us - see his email below.
Just goes to show, you never know how far awareness raising for neuroendocrine cancer can go! CLICK HERE to read Dave’s story.
Dear Kate
Mr Esterson MP has now written to the Secretary of State asking him to review the NHS policy pertaining to Neuroendocrine Cancer.
Once we have received a response we will forward it onto you.
Bill Esterson, MP
Yours Sincerely
Robert Owens Office of Bill Esterson Member of Parliament for Sefton Central
www.neuroendocrinecancer.org.uk
Advocacy
Change NHS UK
Change NHS UK are continuing to meet with partners to discuss the future of healthcare and speaking to local health leaders in every region of England.
To meet the organisation submission deadline of 2nd December - we, at Neuroendocrine Cancer UK, have already submitted our organisation response.
However, they also want to hear from the communities that charities and organisations, like us, represent. Their website is here: https://change.nhs.uk/en- GB/ This consultation process will also feed into the newly announced commitment for a National Cancer Strategy for England: the devolved nations already have theirs in place:
Scotland Cancer Action Plan 2023 to 2026 A Cancer Improvement Plan for NHS Wales 2023-2026 A Cancer Strategy for Northern Ireland 2022-2032
To do this, Change NHS UK have created a ‘Workshop in a Box’ to feed insights into the development of the 10 Year Health Plan to make the NHS fit for the future. Feedback from ‘Workshop in a Box’ events must be shared by 5pm on 14th February at the latest. To ensure our community have a chance to have their say - we aim to host 2 online workshop events during the last week of January - 1 in the evening, 1 during the day - please check our News page for dates and further details after Christmas/New Year.
www.neuroendocrinecancer.org.uk
Education
Thanks to our sponsors:
Molecular Radiotherapy Conference In partnership with UKINETS - 8th & 9th November 2024 This 2-day Molecular Radiotherapy Conference was a great success, with over 150 attendees gathering in London to discuss the latest treatments, clinical trials, and advancements in radioligand therapy. Here’s some feedback from delegates and a round-up video at the bottom of the page: From patients / family / supporters: “Professor Pritchard's presentation which was the best 'positioning' of NENS/NETS I've seen. Managed to bring the subject to my level!” From medical professionals: “Getting to know colleagues working in the field in the UK, as I am quite new. It was helpful to hear about different hospitals' approaches to MRT for NETs, and the various journeys that patients across the country may have to undertake to access treatment. It was good to hear about the considerations that each of the speakers kept in mind in their daily practice, and how these differed between different staff groups.”
CLICK HERE to read our RLT Booklet which was created especially for this event.
www.neuroendocrinecancer.org.uk
Education
UKONS & UKINETS 2024
Our team have been incredibly busy over the past few weeks attending the UKINETs and UKONS conferences in Cardiff and Manchester respectively. Here is Nikie’s report from both events:
UKONS November 2024
Friday 15th and Saturday 16th of November saw the UKONS conference take place in Manchester. The event gathered together more than 800 attendees, once again breaking the previous year’s attendance record. Our nurse Nikie was there! The theme of the conference was ‘Working Towards Positive Change in Cancer Care’.
Of the 147 abstract submissions for posters who made it through the selection process, (under three themes, Working Towards Positive Change Through…) both of those submitted by Neuroendocrine Cancer UK were chosen: the 1st was based on our innovative group therapy programmes, the other on collaborative working towards a solution for PERT shortages.
www.neuroendocrinecancer.org.uk
Education
The first day was opened by a keynote address by Duncan Burton the new Chief Nursing Officer of England who spoke eloquently about the importance of personalised care and the contribution of cancer nursing. A personal highlight of the first day - and indeed the whole conference - was a moving and insightful presentation by Professor Michael West on ‘Compassionate Leadership’. Day 2 kicked off with a presentation on patient-reported outcome measures (PROMS) in cancer care by Dr Grigorios Kotronoulas: an excellent introduction to the usefulness and application of PROMS. A referenced article may be of interest to those reading this - and can be found here The day continued with a real clinical focus and featured excellent presentations, including one dear to our heart at Neuroendocrine Cancer UK: the importance of co-production in patient information.
UKINETS December 2024
This year attended by staff members Nikie, Olivia and Leanne: who shared duties on our awareness stand, giving us the opportunity to chat to many of the different disciplines and staff members involved in neuroendocrine cancer care across the UK - and Europe.
The day was focussed on educating, stimulating discussion and research amongst the many specialities involved in the care of patients with Neuroendocrine Cancer.
www.neuroendocrinecancer.org.uk
Education
Among both national and European speakers was our very own Nikie, addressing 2 key issues:
the patient’s ‘odyssey’ from first symptom to diagnosis, expertise and treatment (further information on pathway can be found on our campaigns and research pages) the ongoing PERT shortages: and where to find advice and support for both staff and patients (further information and regular updates on this topic can be found on our News page)
Topics covered during the day:
Immunotherapy in high-grade NENs: ENETs president-elect Professor Nicola Fazio (Milan, Italy) Multidisciplinary Challenges in Clinical Practice: speakers included Dr M Khan (Cardiff), Dr N Kibriya (London), Dr J Spearman (Birmingham) and former ENETs president Professor Philip Ruzniewski (Paris, France) Developments in “PRRT”: Dr T Brander (Rotterdam, The Netherlands) MEN Syndromes and Challenges: Mrs Jo Grey (CEO of our sister charity AMEND), Dr R Casey (Cambridge) and Professor A Frilling (London) Oral Communications - 5 abstracts chosen from all those submitted to be presented to conference attendees: Dr N Santillon (London), Nikie Jervis (NCUK), Dr ML El Asmar (Basingstoke), Dr M Mortagy (Winchester) and Dr C Lynch (Newcastle).
www.neuroendocrinecancer.org.uk
Education
Grant and Prize Winners were announced: congratulations to all recipients/awardees.
UKI NETS & Neuroendocrine Cancer UK Pump Priming Grant: 2 recipients:
Prof Krista Rombouts, UCL, for: Role of Tumour Microenvironment in SI-NETs: full characterisation of an innovative human-derived 3D ECM SI-NET model and proof of concept study Dr Melissa Frizziero, The Christie, for: Feasibility of cell-free DNA methylation profiling for minimally invasive cancer detection and classification in patients with well-differentiated neuroendocrine tumours
Read more about the Pump Priming Grant in our Advancing Neuroendocrine Cancer Research Update HERE.
We were also able to announce the HCP category winners for the Hero Awards 2024 (see here for full details)
www.neuroendocrinecancer.org.uk
Education
Professor Ramage is a Consultant in Gastroenterology, Clinical Research Director at Hampshire Hospitals NHS Foundation Trust and a Visiting Professor in the Hampshire Collaboration for Health Research and Education (HCHRE), part of the We would also like to give a special mention and send congratulations to Professor John Ramage, who was awarded a Lifetime Achievement Award.
University's Health and Wellbeing Research Group. He has a background in both cancer and quality of life research, especially in regards to those diagnosed and living with neuroendocrine cancer: leading on a number of initiatives regarding this, through his membership of the EORTC Quality of Life Group. He is also the former lead clinician for the Kings Health Partners European Neuroendocrine Centre for Excellence, based at Kings College London, former chair of UKINETs, and has been on the advisory and executive boards for ENETS for many years. He has written more than 150 peer-reviewed publications, and has contributed his knowledge, experience and expertise to both UK and European neuroendocrine cancer clinical guidelines. He has supported Neuroendocrine Cancer UK, from our humble beginnings, through both his membership of our Medical Advisory Board and his ongoing epidemiological and quality of life research: including the first published data on incidence and prevalence of neuroendocrine cancer in England.
CLICK HERE to listen to our podcast episode with Professor Ramage.
www.neuroendocrinecancer.org.uk
Education - Community Educational Webinars Empowering our community with knowledge & understanding Over the past few months, we’ve hosted some incredibly informative and insightful webinars and we thought it would be valuable to feature one of the most recent in this quarterly newsletter.
Managing Moments: Flares & Triggers when Living with Neuroendocrine Cancer with Lucy Aubrey, Cancer Support Specialist at Maggie's, Swansea. This webinar was hosted by the Neuroendocrine Cancer UK's Midlands Regional Natter Group and focused on managing moments - identifying triggers and the responding flare of physical symptom and/or emotional reaction to them, and techniques that can be used to self- manage them.
We are also excited to announce our first guest speaker of 2025 will be Dr Mariq Weatherley. Dr Weatherley is the Principal Nuclear Medicine Physicist for The London Clinic. He holds a Degree in Physics from the University of Kent, a Masters degree in Medical Physics from the University of Surrey and is a state registered Clinical Scientist with the HCPC. His work on diagnostic transformation has been presented at the British Nuclear Medicine Society and he is published in the RCR journal.
This webinar will take place on 15th January 2025 at 18:00. Please CLICK HERE to visit the calendar on our website and keep an eye out for 2025 dates soon!
www.neuroendocrinecancer.org.uk
Support
To join one of our upcoming Patient Support Meetings, please CLICK HERE
Patient Support Meetings (previously Natters)
Newcastle Patient Support Meeting Christmas get-together at The Freeman Hospital.
With cakes by Leanne and jolly jumpers at the ready!
www.neuroendocrinecancer.org.uk
Support
And our wonderful Manchester Patient Support Group met at Didsbury Parsonage Trust with a very important furry friend. The next meeting will take place on Thursday 16th January 2025. CLICK HERE for information.
www.neuroendocrinecancer.org.uk
Support
In one of our latest Not Just NE Cancer podcast episodes, Cathy chats with patients and ambassadors, Chrissie and Caroline about their coping strategies for living with neuroendocrine cancer. In ‘Mind Matters; Exploring Mental Health & Coping Strategies in Neuroendocrine Cancer’ Caroline and Chrissie are honest about their experience of diagnosis and treatment as well as their approach to life. PODCAST NOT JUST NE CANCER For those affected by neuroendocrine cancer.
CLICK HERE to listen
www.neuroendocrinecancer.org.uk
Not Just NE Cancer Podcast Stats from 2024
www.neuroendocrinecancer.org.uk
Stories & Experiences We regularly post stories from members of the neuroendocrine cancer community and in this issue of the quarterly newsletter we would like to highlight a great one from Ambassador, Alan which we published recently.
A Businessman’s Blog, By Alan
Living with Pancreatic Neuroendocrine Cancer I’m writing this in November 2024, and at this moment in time, I aim to find a way to live with my pancreatic neuroendocrine cancer diagnosis A Little About Me A little background on me … I work full-time for Motorola as a Programme Manager. I’m married to Kate with 2 adult daughters. I have many hobbies including my allotment with three greenhouses, a brood of hens, riding my motorbike and we’re about to have a house extension. I have no time for cancer. On reflection, I’ve realised it’s important to me to do more than ‘live with’ my cancer – if I can. Life Goes On – But How? After a cancer diagnosis, all the old adages rear their inevitable heads: life is for living… the show must go on … make the most of what you’ve got … count your blessings … I’ve heard them all. Primary Neuroendocrine Cancer Site: Pancreas NET Centre of Excellence: The Christie NHS Foundation Trust, Manchester
www.neuroendocrinecancer.org.uk
While each is a familiar phrase, I’m busy trying to work out what each means for me. This makes it sound like a choice, which it isn’t. The reality is that life does go on, and you still have all the same responsibilities, with the extra appendage of cancer attempting to weigh you down. The question is: will I let it? And how much of this can I control? Select here to watch Navigating the Uncertainty of Neuroendocrine Cancer: Insights and Coping Mechanisms video. Realism and Optimism: My Coping Mindset I’m fortunate, my natural propensity sits somewhere near realism, with an occasional dose of optimism. So, I get on with it, because Mr. Realism recognises that I’m too young to retire, too stubborn to give up – and I don’t have a choice. Mr Optimism looks for ways to make it all a little easier. Managing Fatigue and the Stigma of Asking for Help When my cancer is stable, my biggest issues are fatigue, and a complete inability to ask for help. Being a man, my logical reaction is to plough on and push through the fatigue, while stubbornly refusing any form of help beyond free prescriptions. You won’t be shocked to hear that I sometimes fall flat on my face, simultaneously infuriating my family. Travel Tips for Work and Leisure I catch a train from Cheshire to London once a month, getting up at 5am, and sometimes not getting home before 9pm, so it’s a long day. Using the Passenger Assistance App I discovered the Rail Passenger Assistance app, and the Disability Lounge at Euston Station. Both are fantastic. After booking my tickets, I go on the app, pop in my details, and the help I need. I’m now safe in the knowledge that after a long meeting and a short tube ride, I can check into the lounge with my Hidden Disability Sunflower lanyard , and collapse on a chair. I’ve been known to nod off...
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www.neuroendocrinecancer.org.uk
Research
Advancing Neuroendocrine Cancer Research Update Research is fundamentally important as a means of providing a better understanding of any disease and therefore improving understanding and management options. We are very proud to be using our Advancing Research campaign to have a meaningful impact on how neuroendocrine research is done. The objective of this campaign is to raise funds for NC research to support those with the condition both today and in the future. We are so grateful to our community for enabling us to fund this research through their generous donations. Thank you so much for your support, we really appreciate it.
Pump-Priming Grant
Earlier this year we funded Prof Rohini Sharma’s grant Mathematical descriptors of clinical outcome to PRRT from routine imaging in patients with neuroendocrine tumours.
We opened up a new round of Pump Priming Grants in September and awarded 2 in December.
The aim of this grant is to provide pump-priming funds to support research projects designed to improve outcomes for patients with neuroendocrine cancer. We are delighted to award them to the following projects: Role of Tumour Microenvironment in SI-NETs: full characterisation of an innovative human-derived 3D ECM SI-NET model and proof of concept study. Prof Krista Rombouts, Royal Free Hospital, London 1. Patients with small intestinal neuroendocrine tumours can develop cancer with scar tissue in the abdomen which results in surgery. Unfortunately, we still lack an effective treatment to inhibit scar and cancer growth driving the urgency for improved therapies. The nature of this scar tissue and the cancer is complex and difficult to mimic in a lab setting.
www.neuroendocrinecancer.org.uk
Research
We use a new innovative lab model made up of human neuroendocrine cancer and fibroblasts that we grow in human protein scaffolds/gels derived from the scar tissue and the cancer of the patient collected after surgery, mimicking much better the human cancer and this to explore/identify therapeutic mechanisms to target cancer cells and their surrounding cells to stop the scar tissue formation and cancer growth. 2. Feasibility of cell-free DNA methylation profiling for minimally invasive cancer detection and classification in patients with well-differentiated neuroendocrine tumours. Dr Melissa Frizziero, The Christie NHS Foundation Trust, Manchester. Diagnosing neuroendocrine neoplasms (NENs) and identifying the correct subtype (which dictates the choice of treatment) can be difficult using tissue biopsies that only collect a small piece of tumour tissue and are technically challenging to perform. This project aims to test whether a new technology examining DNA from a simple blood draw (cell-free DNA) can improve the diagnosis of NENs, offering patients a better chance to receive the best treatment.
Prof Krista Rombouts, Royal Free Hospital, London
Dr Melissa Frizziero, The Christie NHS Foundation Trust, Manchester
www.neuroendocrinecancer.org.uk
Research
NEN RADAR Survey Launch Help SPARC-Europe Enhance NEN Cancer Care
What is the NEN RADAR Survey?
Peptide receptor radionuclide therapy (PRRT), also known as radioligand therapy (RLT), can be a life-saving treatment for neuroendocrine neoplasm (NEN) cancer patients. However, many patients and healthcare professionals face significant challenges in accessing and understanding this treatment. SPARC-Europe has launched the NEN Radioligand Awareness Research (NEN RADAR) to explore these challenges across Europe. The survey findings will inform evidence-based policy recommendations aimed at improving awareness, access, and availability of PRRT.
Who should participate?
We invite NEN cancer patients and healthcare professionals involved in their care to participate in this important survey.
Do you know someone who fits this description? Please share the survey with them and help spread the word.
Make a difference in the future of NEN cancer care! Click below to take the survey now.
Patient
Healthcare Professional
www.neuroendocrinecancer.org.uk
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