Guidelines for the Management of Suspected Sarcoma in Primary Care Author: Anglia Cancer Network Sarcoma SSG Document Approved Date: 16-Dec-10 Review Date: December 2012 Ref Code: AngCN-SSG-Sa1 Status: Active Version 1.0
Contents 1. Background & Scope 3 2. Criteria for Referral 3 2.1. General Recommendations 3 2.2. Suspected Soft Tissue Sarcoma 3 2.3. Suspected Bone Sarcoma 4 3. Referral Procedure 5 3.1. Referral Pathway for Suspected Soft Tissue Sarcoma 5 3.2. Referral Pathway for Suspected Bone Sarcoma 5 4. Clinical Contacts within Secondary Care 6 REFERRAL FORM: URGENT REFERRAL OF SUSPECTED SOFT TISSUE SARCOMA OF THE EXTREMITIES OR PROXIMAL TRUNK 9 5. Network Pathway for Soft Tissue Sarcomas: Extremity and Superficial Trunk 10 6. Network Pathway for Soft Tissue Sarcomas: Head & Neck, Thoracic Cavity, Retroperitoneal, Viscera, Gynaecological 11 7. Network Pathway for Bone Sarcomas 12 Page 2 of 12
1. Background & Scope This document has been developed in order to ensure that all adults in the Anglia Cancer Network catchment area* who present with sarcoma or suspected sarcoma in primary care are referred promptly to the appropriate clinical team for assessment and diagnosis. Please note this guidance applies only to adult patients over the age of 16. A separate policy is available which covers paediatric patients (ages 0 to the patients 16 th birthday). This can be found on the Anglia Cancer Network website www.angliacancernetwork.nhs.uk. This guidance is in line with, and builds upon, the recommendations made in the National Institute for Health and Clinical Excellence (NICE) HSC2000/013 Referral Guidelines for Suspected Cancer (June 2005). * The geographical area which makes up the Anglia Cancer Network is covered by the following PCTs: NHS Peterborough NHS Cambridgeshire NHS Bedfordshire (Mid and North Beds only) NHS Norfolk NHS Great Yarmouth and Waveney NHS Suffolk 2. Criteria for Referral 2.1. General Recommendations In line with the Department of Health Improving Outcomes Guidance for People with Sarcoma (NICE, 2006): A patient who presents with symptoms suggesting bone or soft tissue sarcoma should be referred to a specialist team. If a primary healthcare professional has concerns about the interpretation of a patient s symptoms and/or signs, a discussion with the local specialist should be considered. 2.2. Suspected Soft Tissue Sarcoma A soft tissue mass in an unusual location may give rise to misleading local and persistent unexplained symptoms and signs, and sarcoma should be considered. Urgent referral Refer urgently any patient presenting with an unexplained mass at almost an y site that has one or more of the following features. The mass is: Greater than 5cm in diameter Deep to the fascia, fixed or immobile Pain is present with another feature (such as lump >5cm or increasing in size or deep to fascia, fixed or immobile) Progressively enlarging A recurrence after a previous excision If a patient has HIV disease, Kaposi s Sarcoma should be considered and an urgent referral made if this is suspected. Page 3 of 12
2.3. Suspected Bone Sarcoma History of an injury should not be assumed to exclude the possibility of a bone sarcoma. Consider referral Patients with increasing, unexplained or persistent bone pain or tenderness, particularly pain at rest (and especially if not in the joint), or an unexplained limp should be investigated by the primary healthcare professional urgently. The nature of the investigations will vary according to the patient s age and clinical features. In older people metastases, myeloma or lymphoma, as well as primary bone sarcoma, should be considered. Urgent referral Any patient with a suspected spontaneous fracture should be referred for an immediate X-ray. If the patient is experiencing pain at site, or a suspicious x-ray then bone cancer is a possibility and an urgent referral should be made. A suspicious x-ray may show: Spontaneous fracture Bone destruction Soft tissue swelling New bone formation Periosteal elevation If the X-ray is normal but symptoms persist, the patient should be followed up and/or a repeat X-ray, bone function tests or a referral requested. If after a plain radiograph the report indicates the possibility of a pathological fracture and/or a bone sarcoma, then urgent referral should be made. Referral pathway should be as below. Page 4 of 12
3. Referral Procedure Any patient with a suspected or possible bone or soft tissue sarcoma should follow a clear and rapid pathway to diagnosis, and those with a confirmed sarcoma need to be referred promptly to a sarcoma treatment centre for further management. Any patient presenting with symptoms and signs suggestive of sarcoma (as detailed above) should be referred as follows: 3.1. Referral Pathway for Suspected Soft Tissue Sarcoma Soft tissue sarcomas can occur in any organ or tissue. Within the Anglia Cancer Network Region there are two clinics in place for the diagnosis of soft tissue sarcoma of the extremities or proximal trunk. When initial examination or investigation in primary care suggests a malignancy in any other site, then the 2-week wait pathway for the site of origin should be used for the most rapid referral from primary care. When a diagnosis of sarcoma is made after biopsy or surgery in any hospital in the network the appropriate sarcoma centre will be notified to agree a management plan. Site of suspected Soft Tissue Sarcoma Extremities or Proximal Trunk Any other site Location of service Lead Clinician Method of referral Sarcoma Diagnostic Clinic Cambridge University Hospitals NHS Foundation Trust (CUHFT) Sarcoma Diagnostic Clinic Norfolk & Norwich University Hospitals NHS Foundation Trust (NNUHFT) Dr Helena Earl, Consultant Oncologist Mr Richard Haywood, Consultant Plastic and Reconstructive Surgeon Refer urgently on the 2 week wait site-specific pathway Choose and Book, or faxed referral to 01223 274409 Choose and Book, or faxed referral to 01603 286876 The Network Urgent (2 Week Wait) Referral Form for the two diagnostic clinics (i.e. for suspected soft tissue sarcomas of the extremities/proximal trunk) can be found at the back of this document. 3.2. Referral Pathway for Suspected Bone Sarcoma Any patient with a suspected spontaneous fracture should be referred for an immediate x- ray. Bone sarcoma may be suspected following a suspicious x-ray or as a result of pain at the site (with or without x-ray). If bone sarcoma is suspected the Network agreed pathway is an urg ent referral to the Royal Orthopaedic Hospital (ROH) in Birmingham for diagnosis and treatment. Primary care clinicians may make this referral directly, or alternativel y via an urgent referral to your local orthopaedic service as appropriate. The contact information for the ROH team is provided on the following pages. If a direct referral to ROH is made, a copy of the referral should always be made to the local (CUHFT/NNUHFT) Sarcoma Management Team to enable the patient to be tracked for follow up chemotherapy and radiotherapy (treatment may also be provided locally as appropriate). Page 5 of 12
4. Clinical Contacts within Secondary Care West Anglia Sarcoma Management Team (CUHFT) Name Phone Fax Secretary Dr Helena Earl Medical Oncology helena.earl@addenbrookes.nhs.uk Dr Helen Hatcher Medical Oncology and TYA Lead Helen.hatcher@addenbrookes.nhs.uk 01223 217627 01223 217886 01223 217627 01223 217886 Eileen.Andrews@addenbrookes.nhs.uk 01223 256458 Eileen.Andrews@addenbrookes.nhs.uk 01223 256458 Dr Gail Horan Radiation Oncology gail.horan@addenbrookes.nhs.uk 01223 245 151 ext 4485, Or 01223 217020 01223 274409 Eileen.Andrews@addenbrookes.nhs.uk 01223 256458 Dr Ramesh Bulusu Eileen.Andrews@addenbrookes.nhs.uk Special Interest GIST 01223 245 151 01223 256458 ramesh.bulusu@addenbrookes.nhs.uk Bone and Soft Tissue Limb Sarcomas Pathway to Royal Orthopaedic Hospital Birmingham Mr Robert Grimer (Lead) 0121 685 4019 0121 685 4021 0121 6854146 Lorraine.mole@roh.nhs.uk Mr Lee Jeys (CUHFT Lead) 0121 685 4000 ext 55890 Laura.Holloway@roh.nhs.uk Thoracic Cavity & Chest Wall (including metastatectomy) Papworth Hospital Mr Aman Coonar Aman.coonar@papworth.nhs.uk Mr Frank Wells Francis.Wells@papworth.nhs.uk 01480 364887 01480 364583 Jan.carlton@papworth.nhs.uk 01480 364421 01480 364335 Julie.Mazzone@papworth.nhs.uk Retroperitoneal Sarcomas - CUHFT Professor David Neal david.neal@addenbrookes.nhs.uk 01223 331940 01223 769007 (University Fax) hilary.davey@addenbrookes.nhs.uk 01223 586819 Intra-abdominal Sarcomas - CUHFT Mr Neville Jamieson 01223 336981 01223 257074 Gynaecological Sarcomas CUHFT Gynae-Oncology Surgery Mr Robin Crawford robin.crawford@addenbrookes.nhs.uk 01223 216251 01223 217666 Kim.deal@addenbrookes.nhs.uk GIST - CUHFT Dr Ramesh Bulusu Non-surgical Ramesh.bulusu@addenbrookes.nhs.uk Mr Richard Hardwick Gastric surgery richard.hardwick@addenbrookes.nhs.uk 01223 245 151 01223 245 151 01223 217421 01223 216015 Patz.harradine@addenbrookes.nhs.uk Mr Raj Praseedom / Mr Emmanuel Huguet Liver surgery raaj.praseedom@addenbrookes.nhs.uk 01223 336985 01223 216015 alison.deaves@addenbrookes.nhs.uk Natalie.macMurray@addenbrookes.nhs. uk 01223 256040 / 01223 257074 Page 6 of 12
East Anglia Sarcoma Management Team (NNUHFT) Name Phone Fax Secretary Mr Richard Haywood Consultant Plastic Surgeon and Clinical Lead 01603 288131 01603 288378 Sarah.Porter@nnuh.nhs.uk Richard.Haywood@nnuh.nhs.uk Dr Helen Stubbings Consultant Oncologist helen.stubbings@nnuh.nhs.uk 01603 287629 01603 287463 Catherine.Sullivan@nnuh.nhs.uk Dr Richard Goodwin Lisa.Reid@nnuh.nhs.uk Consultant Radiologist 01603 286094 01603 286077 01603 286286 Ext.3411 Richard.Goodwin@nnuh.nhs.uk Dr Andoni Toms Michelle.Polley@nnuh.nhs.uk Consultant Radiologist 01603 286286 ext 2140 01603 286077 01603 286286 ext. 2140 Andoni.toms@nnuh.nhs.uk Dr Tom Marshall Lisa.Reid@nnuh.nhs.uk Consultant Radiologist 01603 286597 01603 286077 01603 286286 Ext.3411 Tom.marshall@nnuh.nhs.uk Bone Sarcomas Pathway to Royal Orthopaedic Hospital Birmingham Mr John Nolan (NNUHFT) Mr Robert Grimer (Lead) 0121 685 4019 0121 685 4021 0121 6854146 Lorraine.mole@roh.nhs.uk Soft Tissue Sarcomas Pathway to London Sarcoma Service (www.londonsarcoma.org or www.lsesn.nhs.uk) Ian Judson Lead Professor Mr Andrew Hayes Consultant Surgeon (Marsden) Mr Meirion Thomas Consultant Surgeon (Marsden) Thoracic Cavity & Chest Wall - NNUHFT Mr Wyn Parry wyn.parry@nnuh.nhs.uk Gynaecological Sarcomas - NNUHFT Joaquin Nieto Consultant Gynaecologist jjnieto@nnuh.nhs.uk GIST - NNUHFT Ed Cheong Consultant Surgeon Edward.cheong@nnuh.nhs.uk Jenny Nobes Consultant Oncologist Jenny.nobes@nnuh.nhs.uk Head and Neck - NNUHFT Tom Roques Consultant Oncologist Tom.roques@nnuh.nhs.uk Paul Montgomery Head and Neck Consultant Surgeon Paul.montgomery@nnuh.nhs.uk 01603 286396 01603 287882 Angie.Palmer@nnuh.nhs.uk 01603 288692 01603 287532 01603 287370 01603 287372 linda.walpole@nnuh.nhs.uk 01603 288955 01603 287463 Annette.Lawrance@nnuh.nhs.uk 01603 287671 01603 287463 Jennie.fitzgerald@nnuh.nhs.uk 01603 287286 01603 287288 Karen.thorp@nnuh.nhs.uk Page 7 of 12
Intra Abdominal/Retroperitonel - NNUHFT Richard Haywood Consultant Plastic Surgeon Richard.haywood@nnuh.nhs.uk James Hernon Consultant Colorectal Surgeon James.hernon@nnuh.nhs.uk 01603 288131 01603 288378 Sarah.Porter@nnuh.nhs.uk 01603 287688 01603 287896 Pamela.sutch@nnuh.nhs.uk 01603 287688 ext 3688 Page 8 of 12
For use by all primary care teams within the Anglia Cancer Network. Please tick the box of the hospital you are referring to and fax this form to the relevant urgent referral team within 24 hours. REFERRAL FORM: URGENT REFERRAL OF SUSPECTED SOFT TISSUE SARCOMA OF THE EXTREMITIES OR PROXIMAL TRUNK TEAM YOU ARE REFERRING TO: Cambridge University Hospitals NHS Foundation Trust (CUHFT) Sarcoma Diagnostic Clinic Fax: 01223 274409 Norfolk and Norwich University Hospitals NHS Foundation Trust (NNUHFT) Sarcoma Diagnostic Clinic Fax: 01603 286876 SECTION 1: PATIENT INFORMATION PLEASE COMPLETE ALL FIELDS IN BLOCK CAPITALS Surname: NHS Number: First name: Hospital Number Gender: DOB: Is patient aware referral is urgent? YES / NO Address: Transport required? YES / NO First language: Interpreter required? YES / NO Post code: Mobile telephone number: Home telephone number: Work telephone number: SECTION 2: PRACTICE INFORMATION USE PRACTICE STAMP IF AVAILABLE Referring GP: Practice address: Date of referral: Telephone number: Fax number: Post code: SECTION 3: CLINICAL INFORMATION PLEASE COMPLETE AND TICK THE RELEVANT BOXES REASON FOR URGENT 2 WEEK WAIT REFERRAL Soft tissue mass with one or more of the following: > 5cm in size Painful (present with at least one other feature) Increasing in size Deep to fascia Fixed or Immobile Recurrence following excision, please describe: Additional clinical information Please provide as much information as possible. Continue on a separate sheet if required. SITE: SIZE: Form submitted by (PRINT): Contact number: Page 9 of 12
5. Network Pathway for Soft Tissue Sarcomas: Extremity and Superficial Trunk Relapse Patient managed by local MDT Urgent GP (2ww) Referral Sarcoma suspected Emergency Admission Via GP or A&E Not sarcoma Patient referred or discharged as appropriate Sarcoma Diagnostic Clinic CUHFT or NNUHFT Clinical Assessment and US as required MRI If -ve Biopsy If equivocal Highly suspicious or confirmed sarcoma Referred to Sarcoma Centre MDT at Royal Marsden or Birmingham OPA London or Birmingham Decision to treat Surgery London/Birmingham Radiotherapy or Chemotherapy CUHFT, NNUHFT or Ipswich Follow up Oncological follow up locally at CUHFT or NNUHFT Surgical follow up at Sarcoma Centre Other specialty at local Trust Some suspicion of sarcoma requires investigation If +ve Palliative Care Local treatment Routine 18 week referral to local Trust No suspicion of cancer Highly suspicious on clinical examination Sarcoma team at CUHFT or NNUHFT notified Day 0 Day 14 Day 28 Day 31 Day 62 Key: Primary care, local or network specialist team Network sarcoma units (CUHFT/NNUHFT) Supraregional sarcoma centre Elapsed time for follow up or presentation of recurrence, mets or predetermined gap between treatments Page 10 of 12
6. Network Pathway for Soft Tissue Sarcomas: Head & Neck, Thoracic Cavity, Retroperitoneal, Viscera, Gynaecological Urgent GP (2ww) Referral Cancer suspected Emergency Admission Via GP or A&E Other specialty at local Trust Not sarcoma Patient treated as per site specific pathway, referred or discharged as appropriate Site Specific MDT Most commonly: Gynae Skin Upper GI/OG (GIST) Breast Lung (Intrathoricic) Brain/CNS (Neurofibromatosis-1) (OR another MDT) Diagnostic Investigation Highly suspicious or confirmed sarcoma within specialist site Incidental findings Sarcoma discovered post first treatment Patient notified to Sarcoma Centre MDT London or Birmingham Sarcoma team at CUHFT or NNUHFT notified Surgery London/Birmingham OR Network Specialist Centre (after discussion with MDT) Radiotherapy or Chemotherapy CUHFT, NNUHFT or Ipswich Palliative Care Local treatment Relapse Patient managed by local MDT Follow up London/Birmingham OR Network Specialist Centre Day 0 Day 14 Day 28 Day 31 Day 62 Primary care, local or network specialist team Network sarcoma units (CUHFT/NNUHFT) Supraregional sarcoma centre Elapsed time for follow up or presentation of recurrence, mets or predetermined gap between treatments Page 11 of 12
7. Network Pathway for Bone Sarcomas Urgent GP (2ww) Referral Cancer suspected Emergency Admission Via GP or A&E Not sarcoma Patient referred or discharged as appropriate Clinical Assessment 2WW Clinic Imaging Highly suspicious or confirmed bone sarcoma Referred to Sarcoma Centre MDT at ROH Birmingham Sarcoma team at CUHFT or NNUHFT notified OPA Birmingham Decision to treat Surgery Birmingham Radiotherapy or Chemotherapy CUHFT, NNUHFT or Ipswich Relapse Patient managed by local MDT Follow up CUHFT or NNUHFT Other specialty at local Trust Some suspicion of sarcoma requires investigation Palliative Care Local treatment Day 0 Day 14 Day 28 Day 31 Day 62 Primary care, local or network specialist team Network sarcoma units (CUHFT/NNUHFT) Supraregional sarcoma centre Elapsed time for follow up or presentation of recurrence, mets or predetermined gap between treatments Page 12 of 12