South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
Cancer of Unknown Primary (CUP) Network Site Specific Group
Annual Report
2015
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
This Annual Report was prepared by:
Tania Tillett, Chair of the SWAG CUP NSSG
Helen Dunderdale, SWAG Cancer Network NSSG Support Manager
This Annual Report has been agreed by:
Name Position Trust Date agreed
Matthew Sephton Consultant Medical Yeovil District Oncologist Hospital NHS Foundation Trust
Saiqa Spensley Consultant Clinical Taunton and Oncologist Somerset NHS
Foundation Trust
David Farrugia Consultant Medical Gloucestershire Oncologist Hospitals NHS
Foundation Trust
Thomas Wells Consultant Medical Weston Area NHS Oncologist Health Trust
Paola Di Nardo Consultant Medical University Hospitals Oncologist Bristol NHS
Foundation Trust
Vivek Mohan Consultant Medical University Hospitals Oncologist Bristol NHS
Foundation Trust
Anna Kuchel Consultant Medical University Hospitals Oncologist Bristol NHS Foundation Trust
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
Cancer of Unknown Primary NSSG Annual Report Contents
Section Contents Measures Page
1 Overview, achievements and challenges 1.1 Overview of report 4 1.2 Overview of service 4 Achievements and key service 1.3 improvements over the past 4 12 months Challenges for the NSSG 1.4 5 moving forward
The Network Group 2 Meeting and 5 membership 14-1C-102-103m 2.1 Chair of the NSSG 5 2.2 Network Group Membership 14-1C-102m 5 2.3 Attendance Spreadsheet 6 Extended Members of the 2.4 8 NSSG 2.5 Network Group Quoracy 8 The function of the NSSG 2.6 8 meeting
Network CUP Guidelines 3 and Algorithms on the 8 Systemic Therapy of Treatable Syndromes 14-1C-106m
Poorly Differentiated 3.1 Carcinoma with midline 8 distribution
3.2 Women with predominantly 9 peritoneal adenocarcinoma
Women with adenocarcinoma 3.3 involving the axillary lymph 9 nodes
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3.4 Squamous cell carcinoma of 9 the lymph nodes in the neck
3.5 Poorly differentiated 9 neuroendocrine carcinoma
3.6 Inguinal lymph nodes involved 9 with squamous cell carcinoma
4 Patient Experience 14-1C-109m 10 4.1 User Involvement 10
4.2 Patient Experience Surveys 10
5 Clinical Outcome Indicators and Audits 14-1C-110m 5.1 Network Audit 2015 10 5.2 Network Audit 2016 10
6 Clinical Trials and Research Activity 6.1 Discussion of Clinical Trials 14-1C-111m 11
1. Overview, achievements and challenges
1.1 Overview of report This report reflects the period of activity for the NSSG from 1st January 2015 to 31st December 2015. It contains a summary of the activity of the Cancer of Unknown Primary NSSG for this period against several key performance indicators that have been outlined in the National Cancer Peer Review Programme. The report should be reviewed alongside three other key documents for the NSSG: the Constitution, Clinical Guidelines and the Work Programme. The Cancer of Unknown Primary NSSG Constitution provides an overview of how the NSSG operates, outlining the general working processes of the NSSG, the patient referral pathways and the guidelines to which the NSSG adheres. The Clinical Guidelines outline the diagnostic and treatment processes agreed by the network group. The Work Programme summarises the key areas for growth, development and improvement of the NSSG over the next financial year (and beyond where appropriate). All four documents should be reviewed together to give a full overview of the NSSG, its performance and future plans.
1.2 Overview of service The Cancer of Unknown Primary site-specific group aims to oversee, support and bring together the viewpoints of all the multi-disciplinary teams working within the CUP services across the Network. The group also aims to ensure the same standard of care and treatment with this type of cancer
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services across the Network. The NSSG serves to ensure implementation of NICE guidelines for the investigation and treatment of CUP, and to provide guidelines for supportive care. The group supports a programme of education on key developments in the field of CUP cancer and aims to continue and expand the clinical trials programmes available within individual Trusts.
1.3 Achievements and key service improvements over the past 12 months The following are noted as key achievements and service improvements of the Cancer of Unknown Primary NSSG over the past 12 months (during 2015).
The NSSG has undergone reconfiguration in line with the national cancer clinical networks incorporating Gloucester and Cheltenham NHS Trust The NSSG has appointed patient representatives The NSSG has conducted a clinical audit The NSSG has formed meetings independent of the Acute Oncology Service The BNSSG has taken part in an ACE project that affirms the Group’s aspirations to receive referrals via an urgent pathway rather than via two week wait.
1.4 Challenges for the NSSG moving forward
The key challenges for the Cancer of Unknown Primary NSSG moving forward have been highlighted below:
CUP patients are a small group with heterogeneous tumours which means that research and development in this tumour site is difficult.
2. The NSSG Meeting and Membership (measure 14-1C-102–103m)
2.1 Chair of the NSSG Dr Tania Tillett undertook the role of Chair of the Cancer of Unknown Primary NSSG after the inaugural meeting held in May, Chaired by Dr Anna Kuchel, who is now on maternity leave. A list of responsibilities for the NSSG, for the Chair, and other members of the NSSG, plus the NSSG terms of reference, can be found in the paper Recurrent Arrangements for Cancer Network Clinical Groups and Responsibilities for Peer Review, found here, as proposed by the South West Strategic Clinical Network (SCRN) Cancer Network Manager, Jonathan Miller (14th July 2014).
The NSSG meetings are also conducted in line with the Manual for Cancer Services, Cancer of Unknown Primary Measures (Version 1.1):
2.2 Network Group Membership (measure 14-1C-103m) The Cancer of Unknown Primary NSSG is held approximately every six months. In 2015, meetings were held on the 6th May 2015 and the 4th November 2015.
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The table below shows the core members of the NSSG and their attendance.
All participants at MDTs are welcome to attend the NSSG meetings.
2.3 Table 1.0 Cancer of Unknown Primary NSSG core members and attendance Name Position Organisation 06/05/2015 04/11/2015
Alfredo Addeo Consultant University Hospitals Bristol Newly Medical NHS Foundation Trust x appointed Oncologist
Anna Kuchel Consultant University Hospitals Bristol Maternity Medical NHS Foundation Trust √ leave Oncologist
Tania Tillett Consultant Royal United Hospital Bath Medical NHS Foundation Trust √ √ Oncologist
Thomas Wells Consultant Weston Area NHS Trust Medical √ √ Oncologist
Vivek Mohan Consultant University Hospitals Bristol Newly Medical NHS Foundation Trust x appointed Oncologist
David Farrugia Consultant Gloucestershire Hospitals Medical NHS Foundation Trust x √ Oncologist
Matthew Consultant Yeovil District Hospital Sephton Medical NHS Foundation Trust √ √ Oncologist
Paola Di Nardo Consultant University Hospitals Bristol Newly Medical NHS Foundation Trust √ appointed Oncologist
Saiqa Spensley Consultant Clinical Taunton and Somerset √ x Oncologist NHS Foundation Trust
Eleni Toumazou Consultant Royal United Hospital Bath n/a √ Pathologist NHS Foundation Trust
Robert Pitcher Consultant University Hospitals Bristol √ Retired Pathologist NHS Foundation Trust
David Wilson Consultant University Hospitals Bristol √ x
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Radiologist NHS Foundation Trust
Colette Reid Consultant University Hospitals Bristol x x Palliative Care NHS Foundation Trust
Rachel Royston Consultant in North Bristol NHS Trust √ x Palliative Care
Colin Binks Oncology Gloucestershire Hospitals √ x Specialist Doctor NHS Foundation Trust
Alliston Rossiter CUP Clinical Nurse Royal United Hospital Bath Newly √ Specialist NHS Foundation Trust appointed
Claire Lynch CUP Clinical Nurse Yeovil District Hospital Newly √ Specialist NHS Foundation Trust appointed
Julia Hardwick CUP Clinical Nurse University Hospitals Bristol √ √ Specialist NHS Foundation Trust
Lisa Lilly White CUP Clinical Nurse North Bristol NHS Trust Newly √ Specialist appointed
Maggy O'Donnell CUP Clinical Nurse Taunton and Somerset Newly √ Specialist NHS Foundation Trust appointed
Michelle Samson CUP Clinical Nurse North Bristol NHS Trust X x Specialist
Samantha Wells CUP Clinical Nurse University Hospitals Bristol x √ Specialist NHS Foundation Trust
Sarah Colsey CUP Clinical Nurse North Bristol NHS Trust x x Specialist
Sarah Maton CUP Clinical Nurse Gloucestershire Hospitals √ √ Specialist NHS Foundation Trust
Laura Pope Upper GI Clinical Taunton and Somerset √ x Nurse Specialist NHS Foundation Trust
Justine Lloyd Acute Oncology Gloucestershire Hospitals x x ANP NHS Foundation Trust
Carol Chapman Lead Nurse North Bristol NHS Trust Newly added Oncology to delegate x list
Corrine Thomas Lead Nurse Weston Area NHS Trust √ x
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
Oncology
Helen Cancer Network Somerset, Wiltshire, Avon Dunderdale NSSG Support and Gloucestershire √ √ Manager Cancer Services
2.4 Extended Members of the NSSG The table below notes the extended membership of the NSSG during 2014 and their attendance at the meetings.
Table 1.1 Extended NSSG members / guest attendance Name Role Organisation Anthony Walsh Cancer Manager Gloucestershire Hospitals √ √ NHS Foundation Trust Maxine Taylor Senior Research West of England Clinical x x Delivery Manager Research Network Catherine Data Analyst Somerset Cancer Register √ Donnelly
2.5 NSSG Quoracy The meeting held on the 6th May and 4th November 2015 was considered quorate. Although an imaging specialist was unable to attend on the 4th November, the information from the meeting was distributed and opportunity to participate in the discussion after the meeting was given to all of the core members who were unable to attend.
2.6 The service development function of the NSSG meeting The NSSG meeting will have an educational function, review major service developments on a regular basis, escalate operational issues to the Cancer Operational Group and funding issues to the clinical commissioning groups.
3. Network CUP Guidelines and Algorithms on the Systemic Therapy of Treatable Syndromes (measure 14-1C-106m)
3.1 Poorly Differentiated Carcinoma with midline distribution It is important not to miss the highly treatable extra-gonadal germ cell tumour. Patients with the following characteristics should be treated with the same chemotherapy protocol as a poor prognostic germ cell tumour.
Young age Male gender Predominant tumour location in the mediastinum or retroperitoneum Marked elevation of the serum human chorionic gonadotropin (hCG) or alpha-fetoprotein (AFP) levels
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
Immunohistochemical staining for octamer binding transcription factor 4 (also called POU domain class 5 transcription factor 1).
Patients with a midline distribution of poorly differentiated carcinoma without the above features should still have a trial of chemotherapy with a platinum-containing regime after careful immunohistological investigation to exclude melanoma and sarcoma.
Oncologists specialising in Germ Cell Tumours should treat these patients.
3.2 Women with predominantly peritoneal adenocarcinoma Peritoneal carcinomatosis occurs more frequently in women with a BRAC1 mutation and so a careful family history should be sought. The tumour marker Ca125 can be helpful in this scenario. These patients should be treated as if they have Stage III ovarian cancer with a combination of systemic therapy and debulking surgery if appropriate.
Oncologists specialising in Ovarian Cancer should treat these patients.
3.3 Patients with adenocarcinoma involving the axillary lymph nodes Investigations should be targeted at identifying an occult breast primary, including clinical examination, mammography and MRI if appropriate. These patients are a potentially curable subset of CUP and should be treated as if they have Stage II or Stage III breast cancer. They should be treated with axillary LN dissection and consideration of mastectomy or whole breast radiotherapy. Systemic anti-cancer treatments should be given in accordance with guidelines for Early Stage breast cancer.
Oncologists specialising in Breast Cancer should treat these patients.
3.4 Squamous cell carcinoma of the lymph nodes in the neck There should be an initial comprehensive work-up to try to identify a H+N primary including CT-PET and targeted panendoscopy under a specialist team, with consideration of biopsy / neck dissection and bilateral tonsillectomy for patients with an unknown primary tumour.
3.5 Poorly differentiated neuroendocrine carcinoma Octreotide scans are usually not helpful (due to the poor uptake of tracer in poorly differentiated tumours). It should be noted that treatment of metastatic disease does not differ between primary sites and so an exhaustive investigation for the primary should not be undertaken e.g. CT PET and endoscopies etc. These patients should be treated with a small cell carcinoma regime, for example Carboplatin and Etoposide.
These patients can be treated either by a CUP Oncologist or an Oncologist specialising in Lung Cancer.
3.6 Inguinal lymph nodes involved with squamous cell carcinoma
This patients should still be considered for radical treatments, including surgery and/or radiotherapy, and should be referred either through the Anal Cancer pathway to the Lower GI
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services specialist team or women with this diagnosis can also be referred through the Gynaecology Cancer pathways.
4. Patient Experience and Feedback (measure 14-1C-109m)
4.1 User involvement The NSSG has identified two user representative members who are invited to contribute opinions about the Cancer of Unknown Primary service at the NSSG meetings. Although they have not yet been available to attend, they receive the meeting notes and are invited to contribute their opinions to the group outside of the meeting setting.
The NHS employed member of the NSSG nominated as having specific responsibility for users’ issues, and information for patients and carers, is the Cancer Network NSSG Support Manager. The NSSG actively seeks to recruit further user representatives.
4.2 Feedback from the National Cancer Patient Experience Survey It is not possible to extract data for CUP patients from the National Patient Experience Survey. The CNS teams in the region are currently planning to develop and use the same patient experience survey with revised questions. The questions will be very open and will capture data on how delivery of bad news is given and received, and on the provision of CNS contact.
5. Clinical Outcome Indicators and Audits (measure 14-1C-110m)
The NSSG plans to regularly review the data from each MDT’s clinical outcomes, quality indicators and audits. At least one network audit will be performed each year. The results of this are presented at the NSSG meetings and distributed electronically to the group.
5.1 The network audit for 2015 The Provisional Malignancy of Unknown Origin audit was presented at the NSSG meeting on the 4th November 2015. Details can be found within the meeting notes and presentation located here.
5.2 The network audit for 2016 The next (prospective) audit will concentrate on the treatment of histologically confirmed CUP.
6. Clinical Trials and Research Activity (measure 14-1C-111m)
6.1 Discussion of clinical trials Members of the NSSG discuss clinical research trials within every NSSG meeting. At present there are no open trials or potential new trials on the Cancer of Unknown Primary NIHR portfolio. The possibility of developing a home grown trial will be explored. Further discussions about this will be
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South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services undertaken when the results of the next planned audit are available. The NHS staff member nominated as the research lead for the NSSG is Matthew Sephton.
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