Survivorship care of Neuroendocrine Tumours(NETs) from a Specialised Nursing Perspective

Transcription

1 Survivorship care of Neuroendocrine Tumours(NETs) from a Specialised Nursing Perspective Avril Hull, Auckland District Health Board, New Zealand Kate Wakelin, Unicorn Foundation, Australia Philippa Davies, Royal Free Hospital, United Kingdom

2 Topics we will cover: Types of NETs and how they differ Hormonal syndromes and their impact for patients A nursing approach to symptom management Psychosocial issues and care Survivorship issues in relation to chronic cancers Specific strategies and innovations in survivorship care of those with chronic cancers

3 Survivorship Living with, through, and beyond cancer. Cancer survivorship starts at diagnosis & includes people who receive treatment over a longer time. Their treatment can lower the chance of the cancer coming back or helps to keep the cancer from spreading.

4 Types of NETs NETs can be fast or slow growing Majority of patients can live for a very long time with the right support & treatment Neuroendocrine cells- endocrine function Some patients with cancer in these neuroendocrine cells produce excessive amounts of hormone resulting in a functional response Hormonal syndrome

5 Types of NETs Gastrointestinal NETs Duodenum Pancreas Appendix Rectum Small/Large bowel Stomach Oesophagus Endocrine Organs Thyroid Glands - Medullary Thyroid Carcinoma Adrenal Glands - Phaeochromocytoma - Paraganglioma Thymus Other Sites Lung and bronchus (Carcinoid) Goblet Cell NETs (Appendix) Skin (Merkel Cell) Ovaries and Testes

6 Hormonal Influences resulting in Syndromes Hormone secreted SYNDROME Symptoms 2 Insulin Insulinoma Confusion, sweating, weakness, unconsciousness, relief with eating Gastrin Gastrinoma Severe peptic ulceration and diarrhoea VIP* VIPoma Watery diarrhoea with marked hypokalaemia Glucagon Glugagonaoma Erythema, weight loss, diabetes, stomatitis, diarrhoea, Somatostatin Serotonin Antidiuretic Hormone Increased Calcium ACTH Carcinoid Syndrome SIADH PTHrP Cushings Syndrome Cholelithiasis, weight loss, diarrhoea, steatorrhoea, diabetes Flushing, wheezing, diarrhoea, CHD Water retention, confusion, Nausea, constipation, lethargy, pain Cholelithiasis, weight loss, diarrhoea, steatorrhoea, diabetes *Vasoactive intestinal polypeptide 2 Ramage Gut 2010

7 Rates of NET Growth Biopsy proliferative index (Ki 67) < 2% : low grade 2-20% :Moderate or Intermediate grade >20% : High grade

8 Understanding NETs Ki G1 G2 G3 Well Differentiated Cells Neuroendocrine Tumours Poorly Differentiated Cells Neuroendocrine Carcinomas

9 Medical Treatments & Nursing Symptom Management Wide range of treatment options- often mostly given for symptom management or to debulk amount of disease Treatments chosen based on patient requirements / what has worked in past / what is funded With every treatment there are different roles/responsibilities for nurses

10 Treatments for NETs Surgery Somatostatin Analogues Chemotherapy Peptide Receptor Radionuclide Therapy (PRRT) Interferon Trans Arterial Embolisation or (TAE) SIRT Radiofrequency Ablation (RFA)

11 Jane s Journey 63 year old woman, nurse Small bowel resection Diagnosis: Low grade neuroendocrine tumour of the small bowel. (NET G1 Ki 67<2%) Residual unresectable mass root of small bowel mesentery

12

13 Residual unresectable mass root of small bowel mesentery

14 Jane s Journey 63 year old woman 2010 Diagnosis: Low grade neuroendocrine tumour small bowel. (NET G1 Ki 67<2%) Residual unresectable mass root of small bowel mesentery Feb Diarrhoea symptoms, rising Chromogranin A(CgA) & 5HIAA Echocardiogram - NAD

15 Nursing considerations

16 Diarrhoea Advice Check for infection. Try pancreatic enzyme replacement if greasy/frothy/floating stools. If R) hemicolectomy, try bile acid binding drug. Reduce insoluble fibre but increase soluble fibre in diet. Eat little & often. Cook & peel fruit & vegetables. Juices without bits rather than whole products. Non dairy probiotic- bifido/lacto >2billion parts (not during chemotherapy). Try fresh ground nutmeg up to 3tsp a day. Glutamine powder 5-10g once to 3 times a day. If suffering diarrhoea predominant IBS & all of above have been trialled, see Dietitian for trial of the low FODMAP diet.

17 Carcinoid Syndrome - Food Triggers To investigate possibility of food triggers, record food intake, medications & then symptoms experienced. Fats, especially animal fat may trigger carcinoid syndrome. Use low fat cooking methods. Include cold water oily fish omega 3 and Omega 6 oils. Try MCT from coconut oil, different absorption. Foods high in amines such as chocolate & aged cheese may also trigger symptoms in some people.

18 Jane s Journey Feb Diarrhoea symptoms, rising Chromogranin A(CgA) Gold standard Ga68 PET reality is limited availability commenced on Octreotide for Carcinoid symptoms

19 Nursing considerations

20 Treatment & Management Somatostatin analogues Abdominal cramps, nausea, Pain at site of injection, Steatorrhoea. Allergic reaction Glucose changes, bradycardia, gallstone development. Education! Test dosing Trial period Preventative medication Follow up- telephone support When to rethink/change

21 Jane s Journey Feb Diarrhoea symptoms, rising Chromogranin A(CgA), commenced on Octreotide for Carcinoid symptoms Reduced diarrhoea, less flushing reported. Feb 2012 CT mild reduction in mesenteric mass. Intermittent bowel obstruction.

22 Nursing considerations

23 Dietary Advice Bowel Obstruction Chew everything really well. Follow a very low fibre diet (low roughage) to minimise risk of blockages. Drink plenty of fluids. If used to eating a healthy diet this diet may be difficult & supplemental drinks could help. A Dietitian is best placed to discuss the options. Oral Nutrition support- Milkshake, yoghurt, high energy shots and powder supplements.

24 Nutrition and NETs Complex issues Weight loss Digestive symptoms Carcinoid syndrome Steatorrhea Vitamin deficiencies Vitamin B3 (Niacin) in carcinoid syndrome Fat soluble vitamins

25 Exercise and NETs Little NET-specific guidance in literature Clinical Oncology Society Australia new position statement: 88/cosa-position-statement-v4-webfinal.pdf Monitor impact on hormonal syndromes

26 Jane s Journey March 2013 Stable disease on CT 3.5 x 4.1 x 3.6 cm mediastinal mass plus stable but prominent subcentimetre nodes Sept 2013 Recurrent admissions for Transient Bowel obstruction becoming more frequent with time

27 Nursing considerations

28 Mesenteric Fibrosis Affects Treatments Episodes of sub acute bowel obstruction Diet modifications Hydronephrosis Ureteric Stenting Malnutrition Nutritional Suppliments, Enteral feeding, TPN Small Bowel Bacterial Overgrowth Antibiotics Recurrent Ascites, Ectopic Varices -? SMV Stenting (Toumpanakis et al, BSG 2006 Naik et al, ENETS 2014)

29 GI NET Radiographics 2007;27:236

30 Typical challenges from Pain Associated with Mesenteric Fibrosis No evidence in this setting Acute on Chronic Pain can be severe with associated SABO. Opioid requirements but?contraindicated in BO. Chronic pain is often manageable with intermittent acute episodes. Strong pain killers being episodic so a pattern is not found. Poor absorption of oral analgesia

31 Medications

32 Jane s Journey 2013 Referral for surgical opinion No therapeutic options appear to help recurrent bowel obstructions Mesenteric mass NOT surgically resectable 2014 Referral for consideration of PRRT therapy. Although a slow growing tumour she has no other therapeutic options left Not amenable to treatment with PRRT as chance of benefit is small given the low proliferative index of the tumour. (Offer PRRT if the tumour shows more rapid progression.) 2014 Referred to Hospice for symptom management to improve her antiemetic & prokinetic regimen.

33 Jane s Journey Oct/Nov 2017 Admission Sub-acute bowel obstruction - followed by urgent surgery Dec 2017 Discharged into hospice care on liquid foods for EOL cares Feb 2018 Feeling almost back to normal again & eating normal food referral back to Oncology! Sept 2018 Away in UK visiting a new grandson!

34 Nursing considerations

35 Issues Delayed diagnosis Symptom burden Disparity Location Health Care Service Psychosocial impact

36

37 The good news Kicking goals, treatment-wise Increasing numbers of clinical trials People living longer and longer with NETs

38 Where does all this leave our patients?

39

40 Survivorship Care in Advanced Disease Additional areas of need: Physical and psychological symptoms Maintaining quality of life Prognostic uncertainty Making informed treatment decisions Financial burden Family caregiving demands Jacobsen PB, Nipp RD, Ganz PA. Addressing the survivorship care needs of patients receiving extended cancer treatment. J. Am Soc Clin Oncol Educ Book,2017,37(2):

41 Survivorship Care Plans Widely endorsed Elements: Treatment summary Side effects and symptoms to monitor and report Recommended follow-up plan Strategies to remain well More commonly used in patients who have completed curative treatment

42 NET Treatment & Wellness Plan Project Collaboration between Australian Cancer Survivorship Centre & Unicorn Foundation Australia Initial study to determine what was needed information elements most valued delivery format intended use

43 What we found Highly desired Change language Survivorship Care Plan NET Treatment and Wellness Plan

44 Key Elements Paper based Treatment summary Symptoms to watch for Tests what and when Side effect Plan for follow up Who to contact

45 Building the tool Template developed Review & tweak Health professionals Consumer Advisory Group Next step: pilot project

46 What we hope you gained from this session: A basic understanding of NETs, including associated syndromes & issues for patients An increased understanding of the nurses role in survivorship care for patients with chronic cancers such as NETs

47 Thank you