Quarterly Newsletter Summer 2024 - June Issue
Shape the future of Neuroendocrine Cancer UK: take part in our survey today!
Research, Research, Research: Updates from our 'Advancing Neuroendocrine Cancer Research' Campaign
Restoring Resilience: Angela's honest portrayal of life with Stage 4 neuroendocrine cancer
Highlights from recent fundraisers: including a marathon walk with a shopping trolley!
www.neuroendocrinecancer.org.uk Registered Charity Number: 1092386
Contents
01
Welcome
News
03
Awareness
05
Advocacy
08
Education
12
Support
16
Stories & Experiences
19
Research
22
Fundraising
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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 0800 434 6476
Tuesday – Thursday 10:00am – 4:00pm
Excluding Bank Holidays and the following dates: Tuesday 3rd September – Staff Training
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 9:00am – 3:00pm
Excluding Bank Holidays and the following dates: Tuesday 3rd September – Staff Training
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
June always seems like a reflective month here at Neuroendocrine Cancer UK, halfway through the year and our ‘birthday’ month. June 2024 seems especially poignant following a staff meeting where we were discussing the past, the present and the future.
Our support service usage alone has increased by 60% over the last year, there has been an increase in our Webi-Natter attendance, an increase in request for patient information and requests for our organisation to be involved in national/international initiatives – advisory boards and meetings. Our welfare grant requests have increased by 55% over the last year, and our office contact forms are being well utilised, going from a handful a week, to over 20 per week. Natter meetings have increased to over 200 per year and we have had nearly 73,000 new users visit our website since Jan 2024.
We are at a turning point, with an opportunity for change in the next few weeks, and I know that as an advocacy organisation we truly hope that this brings reform to our healthcare system – all of it
We pride ourselves on being a service organisation, providing useful services to those who need it, and this will remain at the heart of our mission, but we also must continue working to make change within the healthcare space in relation to neuroendocrine cancer diagnosis treatments and care – change that will be lasting and constant. We have a project portfolio ongoing that addresses this work plan and these projects have become more intense, complex, and frustratingly costly for a small organisation such as ours. Over the past 17 years working at Neuroendocrine Cancer UK, I have had the pleasure of meeting dozens of intrepid fundraisers who have gone to incredible lengths to support the neuroendocrine cancer community here in the UK. To say that we wouldn't be able to do the work that we do without the support of fundraising is an understatement. We only exist as a charity today thanks to the tireless fundraising of generous and creative individuals like yourself! However, fundraising is not only about raising vital funds, but also a crucial tool in raising awareness of this lesser-known cancer and through eye- catching fundraising events, this can be achieved on both a local and national level. So, a huge and heartfelt thank you to everyone who has supported our work.
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We are at a turning point, with an opportunity for change in the next few weeks, and I know that as an advocacy organisation we truly hope that this brings reform to our healthcare system – all of it. I believe this will require a momentous shift, a cross party agreement and forward thinking, a 10-year plan that can be consistent and focused on the physical and mental health of our country. Focused on access & equity around care and support for all, of course a recognition of the less common cancers, and of the work of third sector organisations that is ongoing & increasing in complexity and remit. I hope people have seen our monthly round ups which cover the top line work that is happening in-house, or maybe attended a Webi-Natter or a Natter support group . Maybe you have spoken to our support team or utilised our psychotherapy services. Or maybe you have used our new handbook to understand all there is to know about neuroendocrine cancer. Whatever service you may have used I truly hope it has helped a little. We are here for you, and to do the best we can, we need to know what you think. We launched a survey a few weeks ago and we need to increase the responses, so we have a fair representation of our community. If you have 10 minutes, please do click this link and have your say: CLICK HERE TO VISIT THE SURVEY June 2024 has another reflective element and that is that of the future of Neuroendocrine Cancer UK. How can we be as effective and useful as possible with the funds we have. Our last financial year (October 2022-September 2023) saw the following split of resources: CLICK HERE TO VIEW The next few months will be all about the next 3 years, as we pull together a new strategy based on evidence, national statistics, external policy, and political influences and most importantly your voice, your thoughts, and your feedback. We need to adapt to the continuing challenges around recognition, adequate evidence-based education, and awareness about neuroendocrine cancer to those in the dark about the true nature of the disease, the impact of a diagnosis and the need for people with a diagnosis to be seen by the right person, in the right place at the right time. The new strategy will be streamlined and focused but fully aligned with our mission: to support and inform patients and families from diagnosis, enabling access to the best care and treatment whilst stimulating neuroendocrine cancer research, increasing national awareness, and influencing improvements in outcomes. Thank you as always to all the wonderful people who help us, who raise awareness of neuroendocrine cancers, who advocate for change and who have a vision of collaboration – the only way to help people in a complex healthcare system that is itself under so much pressure. ‘We should be lifting each other up and cheering each other on, not trying to outshine one another. The sky would be awfully dark with just one star’. I believe (or want to believe) that everyone is doing their best often with limited resources and through challenging times.
Cathy
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News
Neuroendocrine cancer making headlines ‘I thought my back hurt from sitting badly at my desk at work – now I’ve got incurable cancer’.
It is with mixed emotions that we announce the departure of our beloved Administration Assistant, Jackie, who will be leaving us on the 20th of June. Over the last two years, Jackie has been an invaluable member of our team, dedicating herself to sending out resources, supporting the team with various administrative duties, and being a friendly voice on the office phone to many of you. Jackie has decided to pursue a new role in bowel screening, and while we will miss her greatly, we are excited for her as she embarks on this new chapter in her career. Please join us in wishing Jackie all the best in her future endeavours. She will always be a part of the Neuroendocrine Cancer UK family. Farewell to our wonderful colleague, Jackie
Izzie Collins spent months putting her constant aches down to poor posture and being stationary for too long. But in April 2024, the 30-year-old was delivered the life-changing news that she has stage four neuroendocrine tumours. Izzie’s story is featured in full in The Sun online from 5th June 2024, raising vital awareness of neuroendocrine cancer and highlighting the impact it has on all those affected by this disease. To read the article in full, please CLICK HERE. A mum who thought her back pain was from sitting at a desk all day was later diagnosed with incurable cancer.
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
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NICE recommends SIRT Therapy for neuroendocrine tumours
We are delighted to share with you the news that NICE has recommended SIRT (selective internal radiation therapy) for the treatment of neuroendocrine tumour- related liver metastases. NICE Interventional procedures guidance [IPG786]: Selective internal radiation therapy for neuroendocrine tumours that have metastasised to the liver: Published 16th May 2024
What is SIRT and what does this mean for our community?
SIRT is a radiotherapy treatment that targets tumours within the liver, that cannot be safely removed through surgery. It is sometimes also called radio-embolisation or Trans Arterial Radio-Embolisation (TARE). It can be used for primary liver cancers or for cancer that has spread to the liver from another site. For example: liver metastases from a primary bowel neuroendocrine tumour. The aim of SIRT is to stop or significantly slow the growth of cancer. The additional benefit that may be seen in neuroendocrine tumours, is that it may also reduce some of the hormone-associated symptoms that are caused by the tumours. e.g., Carcinoid Syndrome. SIRT may be performed alone or in combination with other therapies.
Read more on page 10
Beth has remained part of the Neuroendocrine Cancer UK team in a freelance capacity over the past few years whilst studying. However, we are thrilled to announce that she is now joining the team in a permanent capacity, part time, to carry out the role of Digital Support Coordinator. She will be responsible for various design activities across the charity, including this quarterly newsletter! Welcome back, Beth! Welcome (back), Beth!
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Awareness
Spotlight on Neuroendocrine Cancer Update 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).
Neuroendocrine cancer, like many less common cancers, is not included in the syllabus at many medical schools. Neuroendocrine cancer awareness for medical students
We would like to increase awareness of the disease among medical students and to this end are working on a series of videos to raise awareness of neuroendocrine cancer among medical students and healthcare professionals. The format will be a Q&A between a patient and a student. In the videos those with the disease discuss their symptoms and journey to diagnosis. We recently filmed the videos and are currently editing them.
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. During the last few months, we have disseminated copies of our GP educational overview at the Primary Care Society of Gastroenterology (PCSG), our gastroenterology overview at the British Society of Gastroenterology (BSG) & our surgery overview at the Association of Coloproctology of Great Britain & Ireland (ACPGBI) ensuring more HCPs can increase their awareness and understanding of this disease. Please help us spread the word by directing your medical team to the HCP page on the website www.neuroendocrinecancer.org/hcps
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One of our aims for this year is to re-introduce Neuroendocrine Cancer UK to healthcare professionals and remind them of the vital services and support we offer. It’s crucial for healthcare professionals to be aware of our organisation and the resources we offer so they can effectively inform those who may benefit from our support. Over the coming months we will be reaching out to the different expert MDTs and delivering copies of the materials we provide and information about our support offerings. Are you able to help support us with delivering these resources? If so, please get in touch with Leanne at Leanne@nc-uk.org for more information. Neuroendocrine cancer Centres of Excellence outreach
It’s crucial for healthcare professionals to be aware of our organisation and the resources we offer so they can effectively inform those who may benefit from our support
Are you able to help support us?
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Awareness
It was an absolute pleasure to be nominated as the chosen charity for the Carmarthen Bay Film Festival 2024. This festival champions the very best in independent film making and film-makers in Wales and from around the world. Neuroendocrine Cancer UK attended the gala dinner and awarded the winner for the ‘no budget’ film (very fitting!) We met some inspiring people including Angharad Mair and John Parr, alongside some of the amazing film makers. Neuroendocrine Cancer UK: the charity partner for the Carmarthen Bay Film festival, May 2024
Huge thanks to Zirenz for joining us at the event, to Nick Pearce (past Town Mayor of Llanelli) for nominating us, and to Simon Howlett ( Festival Director), and all his team for looking after us.
Being the charity partner gave us a wonderful opportunity to raise awareness of neuroendocrine cancer amongst a new audience. Please watch our short video here:
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CLICK HERE to have your say
Advocacy
Shape the future of Neuroendocrine Cancer UK:
At Neuroendocrine Cancer UK we want to ensure we continue to meet your needs and support you in the way you want to be supported. Please complete our survey to allow us to do this. It will take about 15 minutes. Your feedback is so important to us because it allows us to ensure we are addressing your needs and can focus on any areas of improvement within our organisation.
Your feedback is so important to us because it allows us to ensure we are addressing your needs and can focus on any areas of improvement within our organisation
By completing this survey you will help us to:
Your answers will directly contribute to the support and services we offer.
Understand our community’s needs: your input will enable us to tailor our services to better meet the needs of our community. Evaluate our current efforts: This will allow us to assess how well we are currently meeting your needs and identify any gaps or areas for improvement. Identify what drives people to connect with us: this will allow us to better connect with our community and increase our awareness.
Please take a few minutes to complete our survey by clicking on this link: https://www.smartsurvey.co.uk/s/NCUK survey/ Your responses will be kept confidential and will be used solely for the purpose of improving our programmes and services.
We really appreciate your time, Neuroendocrine Cancer UK
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Advocacy
Patients and PRRT with SPARC-EUROPE
Kate Quirk, our patient support co- ordinator took part in the pilot survey which examined the data collected. This will better inform SPARC-Europe's activities to improve policies that boost the awareness and accessibility of PRRT for all NEN cancer patients. Kate said: "Patient involvement, advocacy and feedback is always important in all the surveys we participate in. If you see a call- out for patients to take part, please do respond. We always need to hear your views.".
SPARC is a European political initiative working towards building a comprehensive policy framework for radioligand therapies (RLT), also known to many as peptide receptor radionuclide therapy (PRRT). SPARC will shortly be launching a survey titled: NEN RADAR to gather insights on the understanding and experience of NEN (neuroendocrine neoplasms) cancer patients who undertake PRRT as a treatment option. The survey questions have been carefully crafted by SPARC- Europe's expert working group and cover the topic of: PRRT Experience, Availability and Effects.
You can learn more about SPARC-Europe here https://sparc-europe.com
Midlands NET Service Review Event
Nikie was delighted to represent Neuroendocrine Cancer UK at the Midlands NET service review event where she spoke about the Ideal Pathway.
This insightful day was held in Leicester with participants and speakers from across the region, including the 2 ENETs Centre of Excellence’s specialist teams and referring hospitals, celebrating what works and identifying collaborative initiatives to coordinate and improve neuroendocrine cancer care.
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NICE recommends SIRT Therapy for neuroendocrine tumours
It means that certain members of our community will now have access to a treatment that could positively impact on both the control of their disease and their quality of life Nikie Jervis, Support Service and Education Lead at Neuroendocrine Cancer UK
We are delighted to share with you the news that NICE has recommended SIRT (selective internal radiation therapy) for the treatment of neuroendocrine tumour-related liver metastases. procedures guidance [IPG786]: Selective internal radiation therapy for neuroendocrine tumours that have metastasised to the liver: Published 16th May 2024 NICE Interventional
What is SIRT and what does this mean for our community?
SIRT is a radiotherapy treatment that targets tumours within the liver, that cannot be safely removed through surgery. It is sometimes also called radio- embolisation or Trans Arterial Radio- Embolisation (TARE). It can be used for primary liver cancers or for cancer that has spread to the liver from another site. For example: liver metastases from a primary bowel neuroendocrine tumour. The aim of SIRT is to stop or significantly slow the growth of cancer. The additional benefit that may be seen in neuroendocrine tumours, is that it may also reduce some of the hormone- associated symptoms that are caused by the tumours. e.g., Carcinoid Syndrome. SIRT may be performed alone or in combination with other therapies.
It is a local therapy, meaning it only treats cancer cells near where it is administered. When used to target liver tumours, it does not treat other sites of disease outside of the liver. SIRT (selective internal radiation therapy) takes advantage of the fact that the liver gets its blood supply from 2 sources: the Hepatic Artery and the Portal Vein.
CLICK HERE to read the full article on our website.
We also recently held a special Webi-Natter on this subject and the recording will be available on our website shortly.
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www.neuroendocrinecancer.org.uk
Advocacy
Neuroendocrine Cancer UK: PERT UPDATE 30th May 2024
As you may be aware, over the last few months, we at Neuroendocrine Cancer UK, have been working with charity partners to address the urgent need to resolve the persistent shortage of PERT (Pancreatic Enzyme Replacement Therapy) medications: Creon®, Nutrizym® 22 and Pancrex V®
You may have seen, read or heard, media reports in local or national media about drug shortages including PERT.
We have been in discussion with charity colleagues, the Department of Health & Social Care (DHSC), the National Medicines Supply Team and Creon’s UK Supplier, Viatris, about the problems people are facing in accessing this essential medication. Together, with charity colleagues, we have been pushing for prioritisation to address these shortages: calling for a proactive, long-term, plan that can ensure a sustainable and equitable supply for those that rely on PERT. We would like to thank those of you who have taken the time to complete our PERT survey – the responses, we have so far received, reflect the concerns we have raised about the impact these shortages are having on people with neuroendocrine cancer – and support the demand for a sustainable resolution to current issues.
We know how important PERT is for controlling symptoms, maintaining people’s quality of life and safeguarding their ability to undergo anti-cancer therapies.
If you or a loved one are having difficulties with PERT, please get in touch if you need support. Our helpline team are here to help: 0800 434 6476 – available Tues-Thurs 10am-4pm or use our Contact Us form and we can arrange to call you.
To read this article in full, please CLICK HERE
New Position Statement with updated patient information is due out at the end of June. We will share this on www.neuroendocrinecancer.org.uk once available.
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Education - HCPs
In 2022, Neuroendocrine Cancer UK and Rareminds (an organisation which provides specialist mental health support for the rare disease community,) launched the Open Conversation Report on neuroendocrine cancer and mental health. The aim was to highlight the need for greater understanding of the psychosocial and emotional impact faced by neuroendocrine cancer (NC) patients and carers compared with the ‘common’ cancer population. The report recommends that healthcare professionals (HCPs) should hold open and ongoing conversations with their patients about neuroendocrine cancer and mental health. The mental health support of neuroendocrine cancer patients and families involves a range of provisions which includes sensitive enquiry by HCPs into patient wellbeing and good care co- ordination. Support with care coordination or navigating services can also play a significant role in either ameliorating or exacerbating patient/ carer mental health. Practical advice for healthcare professionals on ‘how’ to have open conversations about mental health with their patients Conversation Openers
Conversation Openers is part of our ‘Spotlight on neuroendocrine cancer’ campaign, which aims to raise awareness of neuroendocrine cancer (NC) among non-NC specialist healthcare professionals. This series of ‘bitesize’ videos will act as a follow on from the Open Conversations report and will support HCPs by providing some practical communication tips on how they can have open and ongoing conversations with their patients about their neuroendocrine cancer and mental health.
We launched this series during Mental Health Week in May.
Please CLICK HERE to see the Conversation Openers.
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Education - HCPs
Neuroendocrine Cancer UK were delighted to be part of the ‘NETs for Newcomers’ course in Oxford last month. This course is run by the UK & Ireland Neuroendocrine Tumour Society and is aimed at healthcare professionals (HCPs) who want to learn more about NETs and become involved in its management. We opened the day to set up the patient perspective and set the context of some of the challenges that exist in this field. It was wonderful to have this opportunity to be involved and promote our many awareness and educational materials to HCPs. NETs for Newcomers
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 a general one for all HCPs, one for GPs and one for gastroenterologists. We have just completed an overview for general surgeons and are close to finishing an overview for endocrinologists and oncologists.
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Education - Community
Here is some wonderful feedback from recent Webi-Natter attendees:
Webi-Natters
Patient: "...This webi-natter was marvellous.
We have had the pleasure of hosting many informative Webi-Natter events over the past couple of months and would like to take this opportunity to invite all of those interested to attend. These talks are free and they don’t require any travel since they take place over Zoom. Simply sign up through our website by CLICKING HERE and learn about neuroendocrine cancer from a range of specialist speakers. Recent Webi-Natter topics have included: ‘Living with a life-limiting illness’ with Dr Elle Reed from Maggie’s, ‘Exploring Sex and Cancer: Insights’ from Sarah Peart and ‘Neuroendocrine Cancer, Endocrinology and Hormones’ from Dr Christine May. If you aren’t able to attend in person, you can also visit our YouTube page to watch the recording which is usually available soon after the live event.
I booked a call back afterwards and the team at NC-UK gave me the confidence to ask my Consultant the questions that really mattered to me. Did you know, they even offer a variety of downloadable questions which helped me focus, and take some time to think beforehand about the things which might drive my own decisions..."
CLICK HERE to visit the downloadable / printable questions
Patient: "..I'm a businessman. I've never asked for help in my life.
But I have to admit that now, I need some support to learn how to handle this whole new medical world I find myself in. My conversations with the Neuroendocrine Cancer UK Support team have been invaluable. They listen and boy, they really do understand the intricacies of this cancer - I have learnt so much from them and can see the results of my self- advocacy straight away ..."
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Education - Community
Bristol Patient Awayday
Nikie was delighted to represent Neuroendocrine Cancer UK at the Bristol Patient Awayday, arranged and coordinated by Bristol CNS Rachael Delderfield and supported by Macmillan & the Penny Brohn Centre. The day concentrated on living with neuroendocrine cancer and well- being, and the factors that can influence this.
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Support
We cannot thank you and the Helpline enough. The support and email links and signposting you have offered me have been fantastic. My wife also feels reassured that she can call back at any time for your expert help
Our Helpline is open Tuesday-Thursday 10am until 4pm and this year, it has provided information and support to more than 100 people a month. Helpline
Natters
We have run an average of 13 meetings a month, either online or face-to-face, held locally, regionally or nationally. If you are interested in attending one of our Natters, or just to find out more information, please CLICK HERE to visit our Calendar.
When my Prof told me that he would be recommending PRRT (Peptide Receptor Radionuclide Therapy) as the next step in my treatment plan, I went straight to the ‘Natter’ support group for advice. These groups have been absolutely invaluable to both myself and my husband. Other members of my support group had already been through PRRT and were able to reassure me that it was well tolerated by the majority of patients, so I felt at ease. My Natter group were also extremely supportive – the sharing of information and tips and a true understanding was incredibly helpful to me.
We have a NEW Natter group starting in West Wales (Carmarthenshire) in July and are delighted to re-start Face-to-face meetings for Surrey/Sussex (Horsham) Natter this month (June).
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Support
Mindfulness course: I wasn't very optimistic starting the course to be honest, as I didn't think I would achieve much from it! But wow, I am totally shocked, I have completely changed my approach to everything, not just pain, anxiety and fatigue. I can manage my body, my mind and everyday situations that pop up. I am truly a changed man. Thank you so much to Steve. Fantastic at his job! Our Group Therapy Programmes, facilitated by our expert colleagues at RareMinds, have been so well evaluated by attendees. Look out for dates and details of upcoming programmes on our website HERE . Group Therapy Programmes
The Power of Self Advocacy
There is great importance in self-care, and having a voice, in living with cancer and what might help to support you, in living well with it. Being heard is vital to effective and holistic care.
CLICK HERE for Debra Houston’s patient journey
CLICK HERE to visit ‘Webinars for Families and Friends’
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Neuroendocrine Cancer UK ‘Not Just NE Cancer’ Podcast
We now have over 30 episodes available, including a special Advancing Research ‘take-over’ which was hosted by our Campaigns Lead, Lisa. In the latest episode of the "Not Just NE Cancer" podcast, host Cathy sits down with Professor Martyn Caplin, Gastroenterologist, Neuroendocrinologist and Neuroendocrine Cancer UK Patron, for an insightful conversation about the development of understanding and care for neuroendocrine cancer. Prof. Caplin discusses how artificial intelligence (AI) could revolutionise medicine and improve the early diagnosis of rare diseases. He shares his journey into the field of neuroendocrinology, recalling the beginnings of UKINETS and ENETS, and highlighting key contributors along the way. Over the past 2 years, we have been incredibly inspired by the variety of guests who have taken the time to share their insight, expertise and experiences on the ‘Not Just NE Cancer’ podcast, hosted by our CEO, Cathy.
They reflect on the significant milestone of hiring the first Specialist Nurse for neuroendocrine tumours in the UK, a role Cathy proudly took on. Professor Caplin also reveals his greatest achievements to date and shares his thoughts on the vital role of specialist nurses in patient care. Looking to the future, Cathy and Prof. Caplin discuss the need for more clinical trials with less bureaucracy and the potential for greater use of molecular profiling in advancing neuroendocrine cancer treatment.
CLICK HERE to visit the podcast page on our website for links to all episodes.
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I had always wanted to study medicine, having been brought up on the premises of my father’s old-style family practice
Stories & Experiences
Living with Stage 4 Neuroendocrine Cancer: Restoring Resilience by Angela Cancer has been part of my life for many years. Both my mother and father had colorectal cancer when I was only 16 years old. Tragically my wonderful father, also a GP, died within 3 months of diagnosis. I had always wanted to study medicine, having been brought up on the premises of my father’s old-style family practice. From the moment I lost my father, I knew that I wanted to be involved with working with patients with cancer and helping them at the ‘end of life’ as part of any future career. My parents’ illnesses put me off track for a while but I did achieve that goal in the end. I studied medicine at the tender age of 28, having worked in business as a graduate and singing opera semi-professionally in London. I later studied for a Masters in Palliative Medicine whilst working as a GP Partner with three small children and a GP for a husband.
I also worked in a hospice for 6 months and as a national telephone triager for ‘Out of Hours’ at weekends. Life was busy. My days in General Practice were ‘full on’ with never a moment’s break, often working 12-14 hour days – now that is certainly something that never reaches the news headlines. There was no time to do anything but work ‘flat out’ but in the meantime, I was getting progressively more and more exhausted, having intermittent bouts of unexplained diarrhoea, “menopausal” flushes, experiencing a fist-like pain under my right shoulder blade, and a sore ache just above my tummy button – which I put down to a busy life, IBS, menopause, and as a result of sitting in one position for hours on end at my computer, or so I had thought. After all, I was only 51 years old..
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Then life changed forever one Friday morning at 4am in October 2019 … I was awoken by a pain that hit me like a thunderbolt in my abdomen – it was all over my tummy, everywhere was tender and I just couldn’t make sense of it. The pain just kept on getting worse. Despite this I went to work and saw patients that day and kept going all weekend taking my daughter to London for her ballet lesson whilst not being able to sit still, having to get up and pace up and down all the time, with no chance of sleep or being able to eat. I just had to keep going as there was so much to do. It was not until the Monday that I saw my GP, who, like me, could not make head nor tail of my pain, however, we both agreed that it was ‘not right’. I was admitted to hospital immediately to see the Surgical Team and had an urgent ultrasound that afternoon, bloods only showed a high inflammatory marker (CRP).
A large abdominal mass was seen located where I had been having my sore aches for months. I had an urgent CT scan the next day. This was followed by two months of feeling like a ‘bunny in headlights’ as each day brought more worrying news and further urgent scans being ordered producing so much uncertainty with the possibility of many worrying alternative diagnoses being suggested: desmoid tumour; brain tumour; ovarian cancer; bowel cancer to name but a few. Finally, after having had PET-FDG, CT, and Tektrotyd scans along with ultrasounds , an MRI of my head, and a colonoscopy , a provisional diagnosis of ileal NET was made in December 2019.
CLICK HERE to continue reading Angela’s story on the Neuroendocrine Cancer UK website.
We're always on the lookout for people who are willing to share their experiences with neuroendocrine cancer. If you would like to share yours, please CLICK HERE.
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Stories & Experiences
Neurodivergence and Neuroendocrine Cancer by Bethann
Autism complicates healthcare, due to communication and social difficulties, somatic and sensory sensitivities, and also because there are differences in physiology – differences that are not always anticipated or appreciated
Neurodivergence is wider than autism, but this piece specifically refers to autism.
Most people are aware of the “social” aspects of autism, but not the wider impact. The tragedy of Oliver MacGowan proves that we do not always respond to medication as neurotypical people do, response to ill health can be different, and that a failure to be aware of those potential problems can be detrimental or even fatal.
Autism is a spectrum disorder, so it is variable: no one with autism experiences being autistic in the same way, so although this is my experience, and there are likely commonalities, others may experience things differently. I have both autism and neuroendocrine cancer (NEN, or neuroendocrine neoplasm). Autism complicates healthcare, due to communication and social difficulties, somatic and sensory sensitivities, and also because there are differences in physiology – differences that are not always anticipated or appreciated.
Pain is a good example.
I had infective discitis, one of the most painful infections possible, but it was not diagnosed for nearly 6 months because I didn’t display pain “ properly ”. People with autism tend to have altered pain response they feel pain, but it may not show physically or emotionally...
CLICK HERE to read Bethann’s story in full.
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Research
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. Advancing Neuroendocrine Cancer Research June Update
Practice-changing Grants
As part of our Advancing Neuroendocrine Cancer Research campaign, and in collaboration with the United Kingdom & Ireland Neuroendocrine Tumour Society (UKINETS) we launched our Practice-Changing Grants in 2023. These grants aim to find new and practical ways to improve the lives and experiences of people with neuroendocrine cancer (outcomes must be shown within 12 months). These grants are practical in nature, open to any healthcare professional, and must demonstrate a clear benefit for people with neuroendocrine cancer. In the video below, Dr Alia Munir provides a brief summary of the GEDNEN Course, a Pilot Model of Group Education for nutritional/dietary advice and symptom management in neuroendocrine cancer that will be run at the Royal Hallamshire Hospital, Sheffield which has been made possible through this Practice Changing Grant.
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www.neuroendocrinecancer.org.uk
We are often told by our community that it is difficult to find information on clinical trials, and that the information around clinical trials can be difficult to interpret and understand if you don’t have a scientific or medical background. Even when information is found, the detail is complex and it’s hard to know where the trial is taking place, or whether or not you would be eligible to participate in it. We formed a partnership with RareCan in the Autumn of 2023 with a view to improving access to clinical trial information for people with neuroendocrine cancer. This was brought to us by a member of the neuroendocrine community, Martin, who originally found RareCan while searching for information about what he could do to help himself and others who may find themselves in the same situation as him. RareCan’s new screening programme identifies clinical trial opportunities for neuroendocrine cancer patients
His introduction has seen us make progress in a number of ways.
RareCan aims to support patients to find a clinical trial that may be appropriate and after a telephone call can provide patients with information to share with their medical teams, empowering them to take the lead when discussing clinical trial opportunities and what their options might be. In the pilot, 9 patients with a neuroendocrine cancer diagnosis have joined the RareCan community, 4 participated in a screening conversation, and of these, 2 were found to have a potential match to a trial and have received reports highlighting access opportunities. These members can now take this information back to their clinicians when they next discuss their treatment options.
If you would like to get involved, you can visit the RareCan website by CLICKING HERE and register for an account to have a call with a member of their team who can discuss potential trial possibilities with you.
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www.neuroendocrinecancer.org.uk
Research
Announcing the 2024 Pump-Priming Grant Winner
As part of our ‘Advancing Neuroendocrine Cancer Research’ campaign, and in collaboration with the United Kingdom & Ireland Neuroendocrine Tumour Society (UKINETS) we are funding one pump- priming grant in 2024. This grant aims to provide pump-priming funds to support research projects designed to improve outcomes for patients with neuroendocrine cancer. This grant is for £30,000. The 2024 pump-priming grant is in memory of Azmat Amin and we are so grateful to her family & friends for all their hard work in raising these funds to enable this grant. Azmat tragically died from neuroendocrine cancer at the age of 39 in 2023, leaving a legacy highlighting the importance of research to increase understanding and treatment of the disease. We are delighted to announce the winner of this year’s pump-priming grant is Professor Rohini Sharma, a consultant in Medical Oncology & Clinical Pharmacology at Imperial College, London.
Professor Sharma’s grant project is titled ‘Mathematical descriptors of clinical outcome to PRRT from routine imaging in patients with neuroendocrine tumours.’ Professor Sharma explains what she will be investigating; “Despite the promise of peptide receptor radiotherapy (PRRT), not all patients’ cancers shrink and many do not benefit. It is challenging to predict who will respond to treatment or not. Using artificial intelligence to analyse routine scans before PRRT, we can predict who would benefit from PRRT and who would not, avoiding potentially 8 months of futile treatment. This will move us one step closer to building personalised treatment strategies for each patient.”
We will keep you updated on the progress of this project.
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www.neuroendocrinecancer.org.uk
Research
Be Part of Research (BPOR)
Kate took part in the NIHR (National Institute for Health & Care Research) Be Part of Research programme this month (June). The study - which included a one hour interview - was commissioned by the UK Clinical Research Network (CRN) to better understand the experiences of people who are interested in research and clinical trials and what motivates them to take part - and also, interestingly, what might prevent people from investigating further. Kate said: "The team are keen to improve experiences and encourage greater participation - it is so important that as an advocacy body, we respond and participate when invited."
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Fundraising
It has been a busy month so far with fundraising events, here is a sample of some of the fantastic events that have taken place...
Steve and Cedric are off their trolley! Steve set out to complete a marathon walk (26.2 miles) pushing a shopping trolley, with a passenger mannequin called Cedric who was sporting flying goggles and a RAF style moustache. Supported on the day by our CEO Cathy Bouvier, they not only raised a fantastic £6289.35 but created valuable awareness with an information stand and media attention. Well done, Steve!
We also had the Bruce family; they have set themselves a huge target of raising £50,000 in memory of mum, Julie and they are well on their way to achieving this with a 3 peaks challenge climbing Ben Nevis, Scafel Pike and Mount Snowdon. Next came a football tournament and recently four members of the family have signed up for the Edinburgh Marathon 2025. To date they have raised an impressive £47,015.50!
Lastly, we had Christine who said she would leave climbing the mountains for the younger ones and bravely decided to shave her head in support of Neuroendocrine Cancer UK. As of today, Christine says she has raised over £3000, an amazing sum.
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www.neuroendocrinecancer.org.uk
There’s still time to host a ‘Cakes for a Cause’ event with your friends and family this June!
Please help us raise awareness and support those affected by neuroendocrine cancer and in the process, spend time with loved ones and enjoy some sweet treats! We’ve made supporting this initiative easy by providing all the materials you’ll need in our ‘Cakes for a Cause’ pack, including disease information, cake decorations, and recipe suggestions. We hope it’ll be both fun and delicious!
Whether you host a small gathering with loved ones, encourage colleagues to bring in cakes at work, or engage your local bakery to donate a portion of their sales, your support will make a difference for those affected by neuroendocrine cancer. ‘Cakes for a Cause’ events will take place throughout June 2024, so choose any date that works for you.
How does it work?
Sign up: Register online, select a date to host your Cake for a Cause event, and invite your guests. Then, get baking! Host your event: Utilise your kit and downloadable resources, which include information about neuroendocrine cancer, recipe ideas, and decorations. During the event, discuss what neuroendocrine cancer is and kindly request your guests consider donating to support Neuroendocrine Cancer UK. Pay in: After your event, pay your funds to our Cakes for a Cause Page and help Neuroendocrine Cancer UK support people with neuroendocrine cancer.
CLICK HERE to register and receive your free Cakes for a Cause Template Pack!
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