Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services Cancer of Unknown Primary (CUP) Network Site Specific Group Annual Report 2015 Version 1.0 1
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 Yeovil District Hospital NHS Saiqa Spensley David Farrugia Thomas Wells Clinical Taunton and Somerset NHS Gloucestershire Hospitals NHS Weston Area NHS Health Trust Paola Di Nardo Vivek Mohan Anna Kuchel University Hospitals Bristol NHS University Hospitals Bristol NHS University Hospitals Bristol NHS Version 1.0 2
Cancer of Unknown Primary Contents Section Contents Measures Page 1 Overview, achievements and challenges 1.1 Overview of report 4 1.2 Overview of service 4 1.3 Achievements and key service improvements over the past 4 12 months 1.4 Challenges for the NSSG moving forward 5 2 The Network Group 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 2.4 Etended Members of the NSSG 8 2.5 Network Group Quoracy 8 2.6 The function of the NSSG meeting 8 3 Network CUP Guidelines and Algorithms on the Systemic Therapy of Treatable Syndromes 14-1C-106m 8 3.1 Poorly Differentiated Carcinoma with midline distribution 8 3.2 Women with predominantly peritoneal adenocarcinoma 9 3.3 Women with adenocarcinoma involving the aillary lymph nodes 9 Version 1.0 3
3.4 Squamous cell carcinoma of the lymph nodes in the neck 3.5 Poorly differentiated neuroendocrine carcinoma 3.6 Inguinal lymph nodes involved with squamous cell carcinoma 4 4.1 4.2 Patient Eperience User Involvement Patient Eperience Surveys 14-1C-109m 9 9 9 10 10 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 1 st January 2015 to 31 st 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 net 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 Version 1.0 4
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 epand 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 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 (14 th 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 approimately every si months. In 2015, meetings were held on the 6 th May 2015 and the 4 th November 2015. Version 1.0 5
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 Anna Kuchel Maternity leave Tania Tillett Royal United Hospital Bath Thomas Wells Weston Area NHS Trust Vivek Mohan David Farrugia Matthew Sephton Gloucestershire Hospitals Yeovil District Hospital Paola Di Nardo Saiqa Spensley Clinical Taunton and Somerset Eleni Toumazou Pathologist Royal United Hospital Bath n/a Robert Pitcher Pathologist Retired David Wilson Version 1.0 6
Radiologist Colette Reid Palliative Care Rachel Royston in Palliative Care North Bristol NHS Trust Colin Binks Oncology Doctor Gloucestershire Hospitals Alliston Rossiter Royal United Hospital Bath Claire Lynch Yeovil District Hospital Julia Hardwick Lisa Lilly White North Bristol NHS Trust Maggy O'Donnell Taunton and Somerset Michelle Samson North Bristol NHS Trust X Samantha Wells Sarah Colsey North Bristol NHS Trust Sarah Maton Gloucestershire Hospitals Laura Pope Upper GI Clinical Nurse Taunton and Somerset Justine Lloyd Acute Oncology ANP Gloucestershire Hospitals Carol Chapman Lead Nurse Oncology North Bristol NHS Trust added to delegate list Corrine Thomas Lead Nurse Weston Area NHS Trust Version 1.0 7
Oncology Helen Dunderdale Cancer Network NSSG Support Manager Somerset, Wiltshire, Avon and Gloucestershire Cancer Services 2.4 Etended Members of the NSSG The table below notes the etended membership of the NSSG during 2014 and their attendance at the meetings. Table 1.1 Etended NSSG members / guest attendance Name Role Organisation Anthony Walsh Cancer Manager Gloucestershire Hospitals Maine Taylor Senior Research West of England Clinical Delivery Manager Research Network Catherine Donnelly Data Analyst Somerset Cancer Register 2.5 NSSG Quoracy The meeting held on the 6 th May and 4 th November 2015 was considered quorate. Although an imaging specialist was unable to attend on the 4 th 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 etra-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 Version 1.0 8
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 eclude melanoma and sarcoma. s 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. s specialising in Ovarian Cancer should treat these patients. 3.3 Patients with adenocarcinoma involving the aillary lymph nodes Investigations should be targeted at identifying an occult breast primary, including clinical eamination, 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 aillary 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. s 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 ehaustive 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 eample Carboplatin and Etoposide. These patients can be treated either by a CUP or an 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 Version 1.0 9
specialist team or women with this diagnosis can also be referred through the Gynaecology Cancer pathways. 4. Patient Eperience 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 Eperience Survey It is not possible to etract data for CUP patients from the National Patient Eperience Survey. The CNS teams in the region are currently planning to develop and use the same patient eperience 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 4 th November 2015. Details can be found within the meeting notes and presentation located here. 5.2 The network audit for 2016 The net (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 eplored. Further discussions about this will be Version 1.0 10
undertaken when the results of the net planned audit are available. The NHS staff member nominated as the research lead for the NSSG is Matthew Sephton. -END- Version 1.0 11