Searchable abstracts of presentations at key conferences in endocrinology
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UKI NETS 21st National Conference

ea0096p1 | Section | UKINETS2023

Development of a mobile app for patients with neuroendocrine neoplasm

Raj Srirajaskanthan Dr. Raj , Alaghband Mr. Andrea , Solis Ms. Bernadette , Virk Mr. Jeevan , John Ramage Prof , Bouvier Ms. Catherine

Digital technology has an important role in the monitoring and management of long term conditions. The purpose of this study was to evaluate the feasibility of using PROMS to monitor symptoms, via a disease specific mobile application. Secondary endpoints included QoL and patient engagement. In addition, we reviewed the total number of symptoms reports and time required for patients to complete and submit these.Methods: Unmet patient nee...

ea0096p2 | Section | UKINETS2023

The Global leadership into malnutrition criteria reveals a high percentage of malnutrition which influences overall survival in patients with gastroenteropancreatic neuroendocrine tumours using somatostatin analogues

Clement Dr. Dominique , Monique van Leerdam Prof , Tesselaar Dr. Margot , Cananea Ms. Elmie , Martin Ms. Wendy , Martin Weickert Prof , Sarker Dr. Debashis , John Ramage Prof , Srirajaskanthan Dr. Rajaventhan

Introduction: Patients with neuroendocrine tumours located in the gastroenteropancreatic tract (GEP-NETs) and treatment with somatostatin analogues (SSA’s) are at risk of malnutrition which has been reported previously, based on weight loss or body mass index (BMI) only. Since 2019 The Global leadership into malnutrition (GLIM) criteria exist to diagnose malnutrition, including weight loss, BMI and sarcopenia. These GLIM criteria have not been assessed in...

ea0096p3 | Section | UKINETS2023

High prevalence of deficiencies in fat-soluble vitamins, minerals and trace elements but no relation with malnutrition in patients with gastroenteropancreatic neuroendocrine tumours using somatostatin analogue’s

Dominique Clement Dr , Monique van Leerdam Prof , Tesselaar Dr. Margot , Cananea Ms. Elmie , Martin Ms. Wendy , Martin Weickert Prof , Brown Dr. Sarah , John Ramage Prof , Srirajaskanthan Dr. Rajaventhan

Introduction: Since 2019 the Global Leadership Into Malnutrition (GLIM) criteria exist for diagnosing malnutrition. Patients with gastoenteropancreatic (GEP) neuroendocrine tumours (NETs) using somatostatin analogue’s (SSA’s) are at risk of malnutrition. Deficiencies in fat-soluble vitamins, minerals and trace elements are not part of the GLIM criteria but frequently reported in patients with GEP-NETs using SSA’s. The relationship between malnut...

ea0096p4 | Section | UKINETS2023

Is a patient’s bmi representative of their body composition in neuroendocrine tumours?

Bradley Ms. Elizabeth , Shah Dr. Tahir

Background: Up to 60% of patients with neuroendocrine tumours (NETs) are malnourished. This negatively impacts survival, length of hospital stay, risk of complications, treatment response, fatigue and quality of life. Malnutrition is typically defined by body mass index (BMI) or weight loss, which provides no information on body composition. Research in other cancers has shown sarcopenia is more significant than BMI. Information is lacking on the influence of ...

ea0096p5 | Section | UKINETS2023

Investigation of the utility of [68Ga]Ga-DOTA-TATE PET/CT scanning in patients with Multiple Endocrine Neoplasia Type 1 (MEN1) with suspected pancreatic neuroendocrine tumours

Kalyan Vamshi Vemulapalli Dr , Gnanasegaran Dr. Gopinath , Ratnayake Dr. Gowri , Ashley Grossman Professor , Hayes Dr. Aimee , Khoo Dr. Bernard , Martyn Caplin Professor , Navalkissoor Dr. Shaunak

Purpose: To evaluate the added benefit and accuracy of [68Ga]Ga-DOTA-TATE PET/CT scans in detecting pancreatic neuroendocrine tumours, compared to conventional cross-sectional imaging with CT or MRI scans, in patients with multiple endocrine neoplasia type 1 (MEN1)Methods: A retrospective analysis was performed comparing the initial [68Ga]Ga-DOTA-TATE PET/CT to the respective contemporary CT or MRI ...

ea0096p6 | Section | UKINETS2023

Evaluation by patient questionnaire of a dedicated NET dietitian service provided to Neuroendocrine Tumour patients

Lee Ruth

Introduction: The Wessex NET Group provides a dedicated NET dietitian service to patients across Dorset and Southern Hampshire. Patients receive individualised, evidence based advice by a dietitian with experience in the specific nutritional issues that NET patients experience. A patient questionnaire was implemented to assess the impact of the NET dietitian.Method: 212 confidential questionnaires were posted to all livi...

ea0096p7 | Section | UKINETS2023

Findings of a retrospective data analysis on outcome of temozolomide singe agent and temozolomide/capecitabine in patients with gastroenteropancreatic neuroendocrine neoplasms (gep-nen) in the european neuroendocrine tumour centre of excellence at the beatson west of scotland cancer centre, glasgow

Irene Wotherspoon Sister , Martin Dr. Amy , McIntosh Dr. DAvid , Reed Prof Nick

Approximately 230 new patients with GEP-NEN are referred annually to the centre. Prevalence of GEP-NEN is increasing due to the availability of 2nd, 3rd or 4th line treatments. Oral chemotherapy is being used with increasing frequency in this setting. The NEN Team wished to explore the outcomes of patients treated with temozolomide singe agent and temozolomide/capecitabine during the previous 5 years and compare the findings with current literature. 18 patients were included i...

ea0096p8 | Section | UKINETS2023

Audit of glycaemic control and assessment in Pancreatic Neuroendocrine Tumours (pNETS) in Sheffield NET Centre ENETS Centre of Excellence

Pieri Dr. Beatrice , Munir Dr. Alia

Background: There may be a bidirectional association between glycaemia and pNETS. Pre-existing diabetes mellitus(DM) is a recognised risk factor for the development of pNETS. Prevalence of DM in pNETS has been reported as 12-26% depending on patient age and tumour location. DM due to pNETS is classified as type 3C pancreatogenic diabetes, Type 3D caused by hormone disorders or Type 3E induced by medications. Functional pNETS, medical therapies and pancreatic s...

ea0096p9 | Section | UKINETS2023

Evaluating the impact and patient experience of a transition from urine to plasma 5-HIAA measurement

Avani Athauda Dr , Fribbens Dr. Charlotte , Shea Dr. Robyn , Morganstein Dr. Daniel

Background: 5-Hydroxyindoleacetic acid (5-HIAA) is the main metabolite of serotonin and is measured in all patients newly diagnosed with neuroendocrine tumours both to diagnose carcinoid syndrome and to monitor treatment response for those with an elevated baseline level. Each test requires patients to avoid certain foods and collect urine over a 24 hour period. It is not known to what extent patients adhere to these requirements or find them burdensome. There...

ea0096p10 | Section | UKINETS2023

A prrt patient experience survey – what really matters to patients?

Coldham Mr. Chris , Butler Mrs Vicky , Brown Mrs Emily , Smith Mrs Stacey , Shah Dr. Tahir

Introduction/Background: PRRT is a high cost treatment for progressing Neuroendocrine tumours. Patients and healthcare providers invest heavily in the treatment journey that lasts a number of months.Aims: To assess the level of patient satisfaction with the PRRT service, to indicate areas for possible improvement and good practice and serve as a baseline for future assessments.Material and ...

ea0096p11 | Section | UKINETS2023

How gallstones can affect the course of PRRT

Coldham Mr. Chris , Smith Mrs Stacey , Shah Dr. Tahir

Introduction/Background: Somatostatin analogue injections are a mainstay for the treatment of Neuroendocrine Tumours. Gallstones are a known adverse effect of this treatment. PRRT can bring extra complications for patients having an episode of cholecystitis, biliary colic, cholangitis or pancreatitis.Aims: To examine a cohort of patients undergoing PRRT, looking for the incidence of gallstones and how many patients suffe...

ea0096p12 | Section | UKINETS2023

Co-production of Patient Information: a model for future practice?

Nikie Jervis Miss , Bouvier-Ellis Mrs Catherine

Background: Liver transplantation for cancer is evolving offering new opportunities for selected Neuroendocrine Cancer patients in terms of improvements in survival and quality of life. According to the British Medical Association, good quality patient information is fundamental to effective, patient-centred, quality care. It rightly considers patients as partners in their care, empowering them to have a better understanding of their health or illness, to make...

ea0096p13 | Section | UKINETS2023

Neuroendocrine cancer: an ideal patient care pathway - addressing inequities in diagnosis, care and support

Nikie Jervis Miss , Catherine Bouvier-Ellis Mrs , Morgan Ms. Lucy , Hooper Ms. Jessica

Background: Neuroendocrine neoplasms (NENs), include a diverse group of rare neuroendocrine cancers that have increased in incidence in England, by 371%, over the last 3 decades. Prevalence has also risen, with NENs now the 10th most prevalent malignancy in England. Despite this increase, awareness remains low, even amongst healthcare professionals, and patients face significant inequities throughout the entire care pathway, from presentation to follow on care...

ea0096p14 | Section | UKINETS2023

Pituitary disease in MEN1: follow up of patients in Northern Ireland

Muhammad Aamir Shahzad Dr , Ahmed Dr. Doua , D'Arcy Dr. Robert , Graham Dr. Una , McHenry Dr. Claire

Multiple Endocrine Neoplasia type 1 (MEN1) is a rare hereditary autosomal dominant disorder characterised by the occurrence of multiple endocrine tumours, predominantly affecting parathyroid glands, pancreatic islet cells and anterior pituitary. Consensus guidelines for MEN1 recommend intensive clinical, biochemical and radiological surveillance commencing in early childhood. The current regimen, which is subject to debate given lack of strong evidence for some aspects of care...

ea0096p15 | Section | UKINETS2023

Alternative splicing and its role in the pathology of Pancreatic and Small Intestine Neuroendocrine tumours

Garan Jones Dr , Trinidad Moreno-Montilla Ms. Maria , Bamford Dr. Rosie , Hodgetts Dr. Harry , Jefferies Dr. Aaron , Martins Dr. Maria , Ibanez Costa Dr. Alejandro , Afi Leslie Dr. Kaiyven , Richardson Dr. Sarah , Capdevila Dr. Jaume , Jon Mill Professor , Lorna Harries Professor , Krista Rombouts Professor , Justo Castano Professor , Thirlwell Professor Chrissie

Neuroendocrine tumours, although considered a rare neoplasia, have been increasing in incidence in developed countries over the last few decades. Previous research has identified several genetic components1. Despite this there is a gap in our knowledge of the causal mechanisms underlying the development of these tumours, with a low background mutation rate and lack of putative variants suggesting that other mechanisms are responsible. Recent work in Pancreatic Neuro...

ea0096p16 | Section | UKINETS2023

Sporadic neuroendocrine neoplasms in patients aged 18-40 years in a tertiary referral centre

Daniel Netto Dr , Lamarca Dr. Angela , Juan Valle Professor , Wasat Mansoor Professor , Hubner Dr. Richard , McNamara Dr. Mairead

Background: The prevalence of neuroendocrine neoplasms (NENs) among younger adults is low; clinical management mirrors that in older cohorts. This study aimed to review presentation, disease trajectory and survival outcomes according to treatment in patients aged 18-40 years (y).Methods: An electronic database was searched (retrospectively) for patients with NENs (18-40y) (cut-off May 2023). Patients with VHL, tuberous s...

ea0096p17 | Section | UKINETS2023

Bridging the gap between neuroendocrine tumour service and nuclear medicine, a new cns role?

Coldham Mr. Chris , Smith Ms. Stacey , Brown Mrs Emily , Shah Dr. Tahir

Introduction/Background: Neuroendocrine Tumour (NET) patients can have specialist and complex needs and this can be exacerbated when they have PRRT. A new role was envisaged that would utilise a NET Clinical Nurse Specialist to work with both Nuclear Medicine and the NET team for delivering PRRT.Aims: As part of the wider NET team the aim for the new CNS was to embed outpatient PRRT delivery, increase capacity and delive...

ea0096p18 | Section | UKINETS2023

Feasibility of home parenteral nutrition in patients with intestinal failure due to small intestinal neuroendocrine tumours: a systematic review

Dominique Clement Dr , Brown Dr. Sarah , Naghibi Dr. Mani , Cooper Dr. Sheldon , Tesselaar Dr. Margot , Monique van Leerdam Prof , John Ramage Prof , Srirajaskanthan Dr. Rajaventhan

Introduction: Maintaining adequate nutritional status can be a challenge for patients with small intestinal neuroendocrine tumours (NETs) and mesenteric lymph node metastasis which can form a mesenteric mass. The preferred treatment option would be resection of this mesenteric mass, however, due to adjacent small bowel loops there is a risk of developing short bowel syndrome (SBS). If the mesenteric mass is not resected there is a risk of developing inoperable...

ea0096p19 | Section | UKINETS2023

Case series of Carcinoid heart presentation with Ovarian neuroendocrine tumour in a tertiary Centre

Mohamed Nihad , Elamin Aisha , Hameed Abdul , O'Toole L , Hussein Ziad , Munir Alia

Background: Carcinoid heart disease (CHD) is a rare carcinoid syndrome (CS) manifestation, often linked to liver metastasis releasing vasoactive amines. CHD can also result from ovarian neuroendocrine tumours (NETs), an uncommon association.Cases Presentations: We reviewed three female patients at our NET centre, averaging 63years of age (59-67years). They all had primary ovarian NETs causing CS and CHD.<p class="abs...

ea0096p20 | Section | UKINETS2023

Carcinoid heart disease in patients unfit for surgery: a case series of medically managed patients

Nosheen Sattar Dr , Nwabunike Dr. Chidinma , Munir Dr. Alia

Background: Carcinoid Heart Disease (CHD) is a well-documented but devastating complication of metastatic neuroendocrine tumours (mNETs). Occurring in approximately 20% of patients with Carcinoid Syndrome (CS) the prognosis is poor, with a 3-year survival of 31% versus 68% in patients with mNETs without CHD1. Management of these patients requires a multidisciplinary approach to manage tumour load via medical and/or surgical options, alongside contro...

ea0096p21 | Section | UKINETS2023

The frequency of carcinoid heart disease in our neuroendocrine tumour cohort: a tertiary centre experience

Douglas Sasha , Batool Aaliya , Senthilvelavar Abishayini , Shah Tahir , Steeds Richard P

Introduction: Neuroendocrine tumours (NETs) can release harmful vasoactive substances into the systemic circulation, causing the characteristic features of carcinoid syndrome (CS) such as flushing, diarrhoea and bronchospasm. Approximately 20% of patients with CS develop carcinoid heart disease (CHD) due to progressive valve thickening, retraction and reduced mobility. CHD primarily affects the right-sided valves resulting in tricuspid and/or pulmonary regurgi...

ea0096p22 | Section | UKINETS2023

Successes and challenges in the combined neuroendocrine tumour and carcinoid heart disease service university hospitals birmingham: a neuroendocrine tumour clinical specialist nurse perspective

Vickrage Suzanne , Kemp-Blake Joanne , Coldham Chris , Smith Stacey

Introduction: The Birmingham Neuroendocrine Tumour (NET) and Carcinoid Heart Disease( CHD) services evolved into a combined and bespoke specialist service in 2018, with the introduction of the enhanced CHD pathway. This involved discussion at the CHD NET MDT , CHD work-up in the inpatient or outpatient setting and a clinical review in the bespoke CHD NET clinic. The CHD NET pathway is now embedded and well-established at our centre. We have a consistent flow o...

ea0096p23 | Section | UKINETS2023

Reasons patients with carcinoid heart disease are deemed unfit for surgery: our tertiary centre experience

Douglas Sasha , Naneishvili Tamara , Yuan Mengshi , Muneeb Arshad Muhammad , Steeds Richard P

Introduction: Carcinoid heart disease (CHD) is a rare complication of neuroendocrine tumours (NETs) and carcinoid syndrome (CS). Approximately one in five patients with CS go on to develop CHD, which primarily affects the right side of the heart; leading to thickened, retracted, immobile and regurgitant cardiac valves that ultimately result in right ventricular (RV) dilatation and dysfunction 1 . Patients are referred for valve replacement if they have severe ...

ea0096p24 | Section | UKINETS2023

Painful cutaneous metastases in well differentiated bronchial neuroendocrine tumour (NET); could serotonin be the guilty molecule?

Jandel Johan , Holder Thomas , Anthoney Alan

Cutaneous and subcutaneous metastases are very rare in well differentiated neuroendocrine tumours with a handful of case reports available to date. Head & neck and bronchial NET seem to show this feature most commonly. Such metastases can be very painful and display allodynia (pain occurring on exposure to non-painful stimuli), even if growing very slowly. We describe the case of a young patient who underwent surgical resection of a typical bronchial NET who developed pain...

ea0096p25 | Section | UKINETS2023

Sequencing of treatment in G1-2 pancreatic neuroendocrine tumour - a case study

J Shi , D Sarker , J Mencel , R Srirajaskanathan , S Brown , D Clement , J Ramage , S Dolly

Herein, we present the case of a 48yo Caucasian male diagnosed with a well differentiated (WD) pancreatic NET. At primary resection in 2014 pathological staging was pT3N1M0 R0 with Ki67 4%. 5 years later he developed recurrence in local lymph nodes and started on lanreotide followed by IRE on subsequent progression. In 2020, there was strongly DPET-avid metastases in mesenteric nodes and liver, so he was enrolled onto the COMPETE trial1. There was sequential progressive diseas...

ea0096p26 | Section | UKINETS2023

Case report: a rectal neuroendocrine tumour with dynamic grade and clinical behaviour

Evan Theodore , Sarker Debashis , Mencel Justin , Srirajaskanthan Raj , Clement Dominique , Ramage John , Brown Sarah , Dolly Saoirse

Introduction: Neuroendocrine tumours (NETs) may change grade and clinical behaviour substantially over time, requiring shifts in management strategy.Case Presentation: A 53-year-old lady presented with abdominal bloating and diarrhoea. Diagnostic MRCP and CT-CAP confirmed metastatic cancer, with bilobar liver metastases and a sclerotic lesion in the right ilium. Her disease was 68Ga-DOTATATE-avid. Rectal biopsy confirmed...

ea0096p27 | Section | UKINETS2023

Which cancer? Clinical decision making in a case of concurrent metastatic neuroendocrine tumour and breast cancer

Williams ST , Hodgson AJ , Marshall C , Munir A , Wadsley J

Background: Neuroendocrine tumours (NETs) are a heterogenous group of malignancies that frequently metastasise to other organs. Both breast cancer and NETs have a predilection for liver, lymphatic and bone metastases. We report the investigations and management of a patient with concurrent small bowel NET and breast cancer.Case: 66 year-old female. Presented with 2 years of abdominal pain, diarrhea and flushing. Octreoti...