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Scottish referral guidelines for suspected cancer May 2014 © Healthcare Improvement Scotland 2014 First published October 2013. Updated May 2014. You can copy or reproduce the information in this document for use within NHSScotland and for educational purposes. You must not make a profit using information in this document. Commercial organisations must get our written permission before reproducing this document. www.healthcareimprovementscotland.org Contents 1Introduction.....................................................................................................................................................................................1 1.1Background................................................................................................................................................................................................................1 1.2Purpose.......................................................................................................................................................................................................................2 1.3 Development of the guidelines..........................................................................................................................................................................2 1.3.1 Members of the guideline development team.............................................................................................................................................2 1.3.2 Methodology used..................................................................................................................................................................................................2 1.4 Achieving a balance................................................................................................................................................................................................3 1.5 Format of the guidelines.......................................................................................................................................................................................3 1.6 Referral timelines.....................................................................................................................................................................................................3 1.7 Dissemination of the guidelines........................................................................................................................................................................4 1.8 Audit and review of the guidelines...................................................................................................................................................................4 2 Common issues for cancer referrals............................................................................................................................................5 2.1 Patient issues.............................................................................................................................................................................................................5 2.1.1 Patients’ and carers’ needs ...................................................................................................................................................................................5 2.1.2 Impact of deprivation............................................................................................................................................................................................5 2.1.3 Demographic factors..............................................................................................................................................................................................5 2.1.4 Watch and wait.........................................................................................................................................................................................................5 2.1.5 Follow up....................................................................................................................................................................................................................5 2.2 Referral process........................................................................................................................................................................................................6 2.2.1 Use of the guidelines by all members of the primary care team...........................................................................................................6 2.2.2 Purpose of referral...................................................................................................................................................................................................6 2.2.3 Clinical decision support tools and structured documentation and proformas for referral .......................................................6 2.2.4 Downgrading of urgent referrals.......................................................................................................................................................................6 2.2.5 Feedback where no cancer is found.................................................................................................................................................................6 3Referral guidelines.........................................................................................................................................................................7 3.1 Lung cancer...............................................................................................................................................................................................................8 3.2 Breast cancer.............................................................................................................................................................................................................9 3.3 Lower gastrointestinal cancer.............................................................................................................................................................................11 3.4 Oesophago-gastric, hepatobiliary and pancreatic cancers......................................................................................................................12 3.5 Urological cancers...................................................................................................................................................................................................14 3.6 Skin cancers...............................................................................................................................................................................................................16 Reference list...............................................................................................................................................................................................17 Appendices..................................................................................................................................................................................................18 Appendix 1: Glossary...........................................................................................................................................................................................................18 Appendix 2: Members of guideline development team - steering group.......................................................................................................20 Appendix 3: Members of guideline development team - subgroups................................................................................................................21 Appemdix 4: Equality and diversity................................................................................................................................................................................23 1Introduction 1.1Background Although cancer is a common problem with over 30,000 new cases being diagnosed in 2011 in Scotland (excluding non-melanoma skin cancers), an individual general practitioner (GP) practice is likely to see about 31–32 new cases per annum1. The average number of new cases per annum of individual cancer types for a GP practice with a list size of 5,518 patients is shown in Table 1. A GP practice is likely to see on average 4–5 new cases per annum of patients with each of the most common cancers (lung, breast and colorectal cancer). An individual GP practice will also see only approximately one new patient affected with either cancer of the bladder, kidney or oesophagus. Table 1: Ten most common cancers in Scotland in 2011 Cancer ICD-10 code Total new cases No. cases per 5,518 population per annum1,2 Trachea, bronchus and lung C33-C34 5,069 5.32 Breast C50 4,604 4.83 Colorectal C18-C20 3,986 4.19 Prostate C61 2,806 2.95 Malignant melanoma of skin C43 1,202 1.26 Head and neck C00-C14, C30-C32 1,186 1.25 Non-Hodgkin’s lymphoma C82-C85 1,001 1.05 Oesophagus C15 836 0.88 Kidney C64-C65 835 0.88 Bladder C67 791 0.83 1. 5,518 represents an approximate estimate of the average list size per GP practice in Scotland as at October 2011 2. Rates are based on the total Scottish population of 5,254,800 as at 30 June 2011 Source: Scottish Cancer Registry, Information Services Division (ISD), April 2013; ISD Scotland, Practices and their Populations: http://www isdscotland.org/Health-Topics/General-Practice/Practices-and-Their-Populations/ The task for the GP is to differentiate between patients whose symptoms may be due to cancer and the much larger number of patients with similar symptoms arising from other causes. For certain symptoms, it may be entirely appropriate for a GP to wait to see if the symptom resolves. Persistence or worsening of the symptom may alert the GP to the possibility of cancer. Wherever possible these factors have been taken into account in the development of these guidelines. Cancer remains a national clinical priority for the Scottish Government and NHSScotland. The Scottish Government launched the ‘Detect Cancer Early’ initiative, in February 2012, to improve the overall 5-year survival for people diagnosed with cancer in Scotland by achieving a 25% increase in the proportion of people diagnosed and treated in the first stage of breast, colorectal and lung cancer by 2015. The earlier a cancer is diagnosed and treated, the better the survival outcomes. Improving the percentage of early stage diagnoses will reduce premature deaths from cancer and subsequently have a positive effect on overall life expectancy. One of the objectives of the programme is to work with GPs and the wider primary care team to promote referral or investigation at the earliest reasonable opportunity for patients who may be showing a suspicion of cancer while making the most efficient use of NHS resources and avoiding adverse impact on access. Scottish referral guidelines for suspected cancer • 1 1.2Purpose The Scottish Referral Guidelines for Suspected Cancer were first published in 2002 and subsequently revised in 2007. This version updates referral guidelines for the lung, breast and lower gastrointestinal cancer and takes account of new research evidence and the findings of audits undertaken since the last revision. The recommendations here supersede those in previous guidelines. In line with the previous referral guidelines, the aim of these updated guidelines is to facilitate appropriate referral between primary and secondary care for patients whom a GP suspects may have cancer. The guidelines should help GPs, the wider primary care team, other clinicians and patients and carers to identify those patients who are most likely to have cancer and who therefore require urgent assessment by a specialist. Equally it is hoped that the guidelines will help GPs to identify patients who are unlikely to have cancer and who may appropriately be observed in a primary care setting or who may require non-urgent referral to a hospital. 1.3Development of the guidelines A multidisciplinary steering group was convened in 2012 to produce a relevant, evidence-based, clinically useful and user-friendly document for practitioners in primary care. The first meeting was aimed at establishing the processes of guideline development and making decisions about the scope of the guideline. 1.3.1.Members of the guideline development team The members reflected the diverse range of stakeholders to which the guideline will apply, including clinicians from both primary and secondary care, pharmacists, nurses, doctors in training, cancer networks and patient representatives. The knowledge and experience of the team was important to bridge the gap between international expert opinion, limited robust evidence, patient experience and clinical practice in NHSScotland. Membership of the steering group is shown in Appendix 2. The full group was supplemented by three subgroups, representing each tumour type for which the guidelines are being updated. The subgroups consisted of specialists in the tumour types, GPs, nurses, pharmacists and representatives from the relevant patient organisations. The subgroups reviewed the extant guidelines and the associated evidence tables. Each subgroup met two times to reach consensus. Membership of the subgroups is shown in Appendix 3. 1.3.2Methodology used The steering group agreed that the starting point for the revision process would be the existing referral guidelines, enhanced by a review of evidence-based recommendations for referral from across the world. These recommendations were identified from a search of the websites for a number of guideline-producing organisations in June 2012. This was supplemented with a search for relevant guidelines in Medline and Embase. The search was updated in January 2013 to ensure that all relevant guidelines were identified. Only guidelines published in English were considered. 2 • Scottish referral guidelines for suspected cancer All the guidelines identified by the search were appraised for methodological quality using the Appraisal of Guidelines for Research and Evaluation II (AGREEII) instrument. AGREEII is a validated tool used for the assessment of clinical practice guidelines. It consists of 23 items organised into six quality domains that cover separate dimensions of guideline quality. Each guideline is assigned an overall quality rating and a decision regarding whether the guideline would be recommended for practice is also made. Each item is rated on a 7-point scale (1=strongly disagree to 7=strongly agree). An overall summary of recommendations and quality rating for each guideline was compiled into evidence tables which are available at www.healthcareimprovementscotland.org The groups identified, reviewed and systematically considered differences in recommendations emerging from the guidelines, in the light of their clinical and practical experience as well as their expert knowledge of the literature, while taking account of the Scottish context. Where Scottish Intercollegiate Guidelines Network (SIGN) guidelines are in place or are being revised, effort was made to ensure consistency between these guidelines and the related SIGN guideline. 1.4 Achieving a balance Members of the subgroups were aware of the need to achieve a balance when setting criteria for urgent referral. If the threshold is set too high, patients with a significant possibility of having cancer will be excluded. Furthermore the criteria would be likely to be limited to patients with the most obvious symptoms, who may be most likely to have advanced and/or incurable disease. Conversely, if the threshold is set too low, a large number of patients might be unnecessarily referred urgently causing them avoidable anxiety and distress. This could overwhelm hospital clinics to the detriment of patients with cancer and also to those with other serious illnesses. 1.5Format of the guidelines The guidelines covering the three tumour groups that have been revised are presented separately. There is not complete uniformity in the layout of the guidelines as members of specific subgroups advised slightly different formats that reflect the distinct nature of symptoms and patterns of disease. However, for each tumour group the guidelines include information on: zz key points about the pattern of the relevant cancer, and zz guidelines for referral. 1.6 Referral timelines The referral timelines used in the guidelines include: zz urgent suspicion of cancer: the patient is seen within the Scottish Government target for urgent referrals zz routine: all other referrals, and zz primary care management. All staff involved in the referral process should be aware of the difference and importance of using these terms. Scottish referral guidelines for suspected cancer • 3 1.7Dissemination of the guidelines The guidelines will be widely disseminated in a variety of formats. The current guidelines will be made available on both the Scottish Government and the Healthcare Improvement Scotland websites. 1.8 Audit and review of the guidelines Audit and monitoring of the guidelines in practice should generate a valuable amount of new information which will be used to revise the guidelines in the future. It is strongly recommended that the Regional Cancer Networks undertake prospective audit of the guidelines. 4 • Scottish referral guidelines for suspected cancer 2 Common issues for cancer referrals 2.1 Patient issues 2.1.1 Patients’ and carers’ needs All healthcare professionals should be sensitive to the needs of patients, carers and relatives when cancer is suspected. Good practice includes: zz being sensitive to the patient’s wishes to be involved in decisions about their care zz providing understandable information at a level appropriate to the patient’s wishes to be informed zz providing information about any referral to other services in a variety of formats, whether to secondary or tertiary care, including how long they might have to wait, who they are likely to see, and what is likely to happen to them zz considering carefully the need for physical and emotional support while awaiting an appointment with a specialist zz considering any carer’s needs for support and information, taking issues of confidentiality into consideration zz taking the individual’s particular circumstances into account, for example age, family, work and culture zz being aware of, and offering to provide access to, sources of information in various formats zz maintaining a high standard of communication skills, including, for example, in the process of breaking bad news. 2.1.2 Impact of deprivation Deprivation affects the incidence of and mortality associated with cancers. It also impacts materially on the ability of patients to access healthcare services. It is essential that any consultation or other opportunity where a patient from a deprived area presents with symptoms suggestive of possible cancer is used to full advantage. 2.1.3Demographic factors As with deprivation, the increasing number of patients with long-term conditions and comorbidity pose major clinical challenges and affect both the incidence of and mortality from cancer. Chronic disease management programmes afford an opportunity to identify symptoms suggestive of possible cancer. 2.1.4Watch and wait It is not always appropriate for a GP to refer a patient immediately with new symptoms or signs which could be cancer (for example, 1 week of diarrhoea or a sore throat for 10 days) and an initial ‘watch and wait’ strategy may be appropriate. It is also important for GPs to provide a ‘safety net’ and ensure patients know when to return if their condition does not improve or change. However, in some cases, patients will be unwilling to watch and wait due to high levels of anxiety. In such cases, the referring GP should ensure that this is detailed in the referral documentation. 2.1.5Follow up It is good practice for the referrer to consider ways of supporting the patient to attend investigations or reviews and addressing any concerns the patient may have about their referral. Reminders, such as text messaging, have been shown to be effective in increasing the attendance rate for reviews. Scottish referral guidelines for suspected cancer • 5 2.2 Referral process 2.2.1Use of the guidelines by all members of the primary care team The guidelines are designed for use in any primary care setting, by any member of the clinical team. Local arrangements should be in place in each NHS board area for pharmacists, NHS24, nursing staff and others to ensure rapid referral is arranged. Most commonly this would be by making arrangements for the patient to see their GP urgently, clearly notifying the concern about suspected cancer. 2.2.2 Purpose of referral The ‘urgent suspicion of cancer’ referral pathway is designed to allow the rapid assessment and investigation of a patient to determine the cause of their symptoms. For patients with persisting symptoms it is not acceptable to simply exclude cancer without providing an assessment of the likely underlying cause. This may involve individual hospital specialities making internal referrals to their colleagues to help determine the nature and cause of the patient’s symptoms. These internal referrals should be undertaken with the minimum of delay and with good communication to both the patient and GP. Where diagnostic tests are undertaken, the person requesting the test has a responsibility for acting on the result and ensuring that the patient receives this. NHS boards may wish to consider which diagnostic services GPs should have direct open access to. In these situations the GP would be responsible for communicating the result to the patient and arranging any subsequent follow up. 2.2.3 Clinical decision support tools and structured documentation and proformas for referral To achieve consistency, clinical decision support systems and structured proformas for referral would be helpful for use in all clinical settings. Scottish Care Information (SCI) Gateway provides the means for electronic referrals, but clinical decision support systems vary across NHSScotland. 2.2.4Downgrading of urgent referrals On rare occasions it may be acceptable for the receiving hospital speciality to downgrade an urgent suspicion of cancer referral to routine. This should never occur without first contacting the GP practice and allowing the GP the opportunity to explain why an urgent referral was requested. Vital information may have been omitted from the referral or may have become available since the referral was made. It is essential that the patient is kept informed about any change in referral priority. 2.2.5Feedback where no cancer is found The referring GP should receive timely feedback on the outcomes for all patients with an urgent suspicion of cancer referral. Where negative results are found, this allows the GP to consider alternative courses of action. Likewise, information about inappropriate referrals should be fed back to the referring GP detailing why it was felt to be inappropriate and suggesting an alternative course of action. 6 • Scottish referral guidelines for suspected cancer 3Referral guidelines Scottish referral guidelines for suspected cancer • 7 3.1Lung cancer More than 90% of patients with lung cancer are symptomatic at the time of diagnosis2. However, many symptoms associated with lung cancer (particularly cough and fatigue) are common presentations in primary care, associated with chronic diseases such as chronic obstructive pulmonary disease (COPD). It is therefore important that changes in symptoms are identified and acted upon. Chest x-ray findings are abnormal in over 96% of symptomatic patients with lung cancer2. In most cases where lung cancer is suspected, it is appropriate to arrange an urgent chest x-ray before urgent referral to a chest physician. However, a normal chest x-ray does not exclude a diagnosis of lung cancer. If the chest x-ray is normal but there is a high suspicion of lung cancer, patients should be offered urgent referral to a respiratory physician. In patients with a history of asbestos exposure, mesothelioma should be considered. Urgent chest x-ray Any haemoptysis Unexplained/persistent (more than 3 weeks) change in cough dyspnoea chest/shoulder pain weight loss chest signs hoarseness fatigue in a smoker aged over 50 years Finger clubbing Features suggestive of metastatic disease Cervical and/or persistent supraclavicular lymphadenopathy Any person who has been referred for an urgent chest x-ray and has been found with consolidation should have a repeat chest x-ray no more than 6 weeks later to confirm resolution. Urgent suspicion of cancer referral Any symptoms or signs detailed above persisting for longer than 6 weeks despite a normal chest x-ray Chest x-ray suggestive/suspicious of lung cancer (including pleural effusion, pleural mass and slowly resolving consolidation) Persistent haemoptysis in smokers/ex-smokers over 50 years of age Mesothelioma In mesothelioma, 80–90% of patients will have a history of asbestos exposure2 and it is essential that a career history is taken to identify any possible asbestos exposure. Urgent suspicion of cancer referral Individuals over 50 years with history of asbestos exposure and recent onset of: chest pain dyspnoea unexplained systemic symptoms 8 • Scottish referral guidelines for suspected cancer 3.2 Breast cancer Breast symptoms are a relatively uncommon presentation in primary care. It is estimated that between 0.35% and 0.6% of all consultations in Scotland are for breast symptoms. Many of these consultations will be in young women, whereas the biggest risk factor, after gender, is increasing age. Incidence of breast cancer in women aged 30-35 is 33 per 100,000 population and approximately 81% of breast cancers occur in women over the age of 50. Breast cancer accounts for 30% of cancers in women and around 4,400 people are diagnosed with breast cancer in Scotland each year; approximately 20 of these are men. The following recommendations seek to improve the referral and effective management of breast symptoms in women and men in primary care. Guidance for referral to regional genetics centres for those with a family history of breast cancer is available at www.sehd.scot.nhs.uk/mels/CEL2009_06.pdf Lump Urgent suspicion of cancer referral Routine referral Any new discrete lump (in Any new discrete lump in patients over 35 years) New asymmetrical nodularity that persists at review after menstruation (in patients over 35 years) Unilateral isolated axillary patients under 35 years with no other suspicious features Primary care management Issue relevant advice leaflet Women with longstanding tender lumpy breast and no focal lesion New asymmetrical nodularity Tender developing breasts that persists at review after menstruation (in patients under 35 years) in adolescents lymph node in women Cyst persistently refilling or Nipple symptoms recurrent cyst Bloodstained discharge New nipple retraction Persistent discharge sufficient Transient nipple discharge to stain outer clothes which is not bloodstained Check prolactin levels Nipple eczema if unresponsive when discharge present to topical steroids (such as 1% hydrocortisone) after a minimum of 2 weeks Longstanding nipple retraction Nipple eczema if eczema present elsewhere Skin changes Skin tethering Obvious simple skin lesions such as sebaceous cysts Fixation Ulceration Peau d’orange Abscess/ infection Mastitis or breast inflammation Abscess or breast which does not settle after one course of antibiotics inflammation even after settled in patients over 35 years Abscess* or inflammation – try one course of antibiotics to cover staphylococcus and streptococcus (also consider possible anaerobic infection as per local guidelines) Scottish referral guidelines for suspected cancer • 9 Urgent suspicion of cancer referral Pain Routine referral Unilateral persistent pain in post menopausal women Intractable pain that interferes with the patient’s lifestyle or sleep Gynaecomastia Primary care management Issue relevant advice leaflet Women with moderate degrees of breast pain and no discrete palpable lesion Exceptional aesthetics referral Examine and exclude to plastic surgery pathway if required Exclude or treat any endocrine cause prior to referral abnormalities such as lymphadenopathy or evidence of endocrine condition Review to exclude drug causes Measure hormones (oestrogen, testosterone, prolactin, human chorionic gonadotropin and alpha-fetoprotein) Reassure * Any acute abscess requires immediate discussion with secondary care. 10 • Scottish referral guidelines for suspected cancer 3.3Lower gastrointestinal cancer Lower gastrointestinal symptoms are common presentations in primary care. Rectal bleeding for instance is estimated to affect 14,000 individuals per 100,000 population each year2. There are large differences in the predictive value of rectal bleeding for cancer according to its association with other symptoms and signs and the age of the patient. For example, the positive predictive value of rectal bleeding alone is 2.4%, which rises to 8.5% in combination with an abnormal rectal examination. Different management strategies should be adopted according to cancer risk so that those patients with transient lowrisk symptoms caused by benign disease avoid unnecessary investigation. The following guideline is recommended for managing patients with features associated with a possible diagnosis of colorectal cancer. Guidance for referral to regional genetics centres for those with a family history of colorectal cancer is available available at www.sehd.scot.nhs.uk/mels/HDL2001_24Guide.pdf. In patients with ulcerative colitis, a plan for follow up should be agreed. An abdominal and rectal examination and a full blood count should be performed on all patients with symptoms suggestive of colorectal cancer. These findings can facilitate appropriate triage in secondary care. A negative rectal examination, or a recent negative faecal occult blood result, should not rule out the need to refer. The carcinogenic embryonic antigen (CEA) test should not be used as a screening tool. High-risk features Urgent suspicion of cancer referral Bleeding Repeated rectal bleeding without an obvious anal cause Any blood mixed with the stool Bowel habit Mass Persistent change in bowel habit especially to looser stools (more than 4 weeks) Right-sided abdominal mass Palpable rectal mass Iron deficiency anaemia Other Unexplained iron deficiency anaemia Past history of lower gastrointestinal cancer with any of the symptoms above Primary care management Low-risk features Transient symptoms (less than 4 weeks) Patients over 40 years in absence of high-risk features Watch and wait (4 weeks) Assessment and review Consider bowel diary Appropriate information, counselling and agreed plan for review with GP Refer if symptoms persist or recur Scottish referral guidelines for suspected cancer • 11 3.4 oesophago-gastric, hepatobiliary and pancreatic cancers Approximately 3,000 people are diagnosed with a primary oesophago-gastric, hepatobiliary or pancreatic cancer in Scotland every year1. Common symptoms of oesophago-gastric cancer include weight loss, dysphagia, heartburn or pain, vomiting and anaemia. Common symptoms of hepatobiliary or pancreatic cancer include jaundice, abdominal mass, epigastric pain and weight loss. The risk of developing an oesophago-gastric cancer is higher in patients of East Asian origin and a higher suspicion of risk should be used in these patients. An abdominal examination and appropriate blood tests (for example, full blood count, ferritin, urea and electrolytes test [U&Es] and liver function tests [LFTs]) should be performed on all patients with symptoms suggestive of these cancers. These findings can facilitate triage in secondary care. Referral should not be influenced by Helicobacter pylori (H pylori) status. Proton pump inhibitors should be avoided if possible prior to investigation. H2 antagonists may be used for symptomatic relief. All patients with high-risk features should be referred to a team specialising in the management of oesophago-gastric, hepatobiliary or pancreatic cancers, depending on local arrangements. Urgent suspicion of cancer referral Oesophago-gastric cancer Dysphagia (interference of the swallowing mechanism that occurs within 5 seconds of the swallowing process) or odynophagia (pain on swallowing) at any age New onset upper gastrointestinal pain or discomfort in people over 55 years New or worsening upper gastrointestinal pain or discomfort combined with one or more of the following features: {{unexplained weight loss {{unexplained iron deficiency anaemia Persistent vomiting more than 4 weeks. Upper gastrointestinal pain or discomfort combined with at least one of the following risk factors: {{family history of oesophago-gastric cancer in more than two first-degree relatives {{family history of familial adenomatous polyposis in any first-degree relative {{Barrett’s oesophagus {{pernicious anaemia {{gastric surgery over 20 years ago {{known dysplasia, atrophic gastritis or intestinal metaplasia 12 • Scottish referral guidelines for suspected cancer Hepatobiliary and pancreatic cancer Features of hepatobiliary or pancreatic cancer can be vague and non-specific, and may include: {{unexplained {{upper obstructive jaundice abdominal or epigastric mass {{unexplained back pain (consider other cancer causes such as malignant spinal cord compression) {{unexplained weight loss {{any suspicious abnormality, in the hepatobiliary tract, found on imaging (such as biliary dilatation or pancreatic/liver lesion) Primary care management Dyspepsia under 55 years without accompanying symptoms or risk factors should be managed according to local or national guidelines Scottish referral guidelines for suspected cancer • 13 3.5 urological cancers Prostate cancer Prostate cancer is the most common cancer in males in Scotland, with approximately 2,800 new cases diagnosed every year1. Risk increases with age and approximately 99% of cases are diagnosed in men aged over 50 years. Men are 2.5 times more likely to be diagnosed with prostate cancer, if their father or brother has had it. In the UK, the lifetime risk of prostate cancer in Black men (1 in 4) is double that of the lifetime risk of all men combined (1 in 8). Men presenting with unexplained possible symptoms and signs suggestive of prostate cancer such as changes to urinary patterns, erectile dysfunction, haematuria, lower back pain, bone pain or weight loss should have a digital rectal examination and a prostate specific antigen (PSA) test with counselling. A PSA test should not be performed within 1 month of a proven urinary tract infection (UTI). It should be noted that the majority of men with prostate cancer have no symptoms at all. Bladder and kidney cancer Visible haematuria is the most common presenting symptom for both bladder and kidney cancer. Other presenting features include loin pain, renal masses, non-visible haematuria, anaemia, weight loss and pyrexia. Both cancers are uncommon, with around 800 new bladder and 860 new kidney cancers each year1. Testicular and penile cancer Although scrotal swellings are a common presentation in general practice, testicular cancer is relatively rare, with around 200 new cases per annum, of which approximately 70% are between 15 and 45 years1. Solid swellings affecting the body of the testis have a high probability (> 50%) of being due to cancer. Cancer of the penis is rare, with around 60 new cases each year in Scotland, but its incidence is rising1. All patients presenting with symptoms or signs suggestive of urological cancer should be referred to a team specialising in the management of urological cancer, depending on local arrangements. Urgent suspicion of cancer referral Prostate cancer Evidence from digital rectal examination of a hard, irregular prostate Elevated or rising age-specific PSA. Rough guide to normal PSA levels: {{men less than 60 years - less than 3ng/ml {{men aged 60–69 years - less than 4ng/ml {{men aged 70 years and over - less than 5ng/ml Bladder and kidney cancer Patients with painless visible haematuria Patients with visible haematuria and symptoms suggestive of UTI but with sterile mid-stream urine (MSU) Abdominal mass identified clinically or on imaging that is thought to arise from the urinary tract 14 • Scottish referral guidelines for suspected cancer Testicular and penile cancer Swelling in the body of the testis Suspicious scrotal mass found on imaging Men considered to have epididymo-orchitis or orchitis which is not responding to treatment Any non-healing lesion on the penis or painful phimosis Non urgent referral Elevated age-specific PSA where urgent referral will not affect outcome due to age or comorbidity Asymptomatic persistent non-visible haematuria without obvious cause Patients over 40 who present with recurrent UTI associated with any haematuria Scottish referral guidelines for suspected cancer • 15 3.6 skin cancers Approximately 12,000 people are diagnosed every year with skin cancer in Scotland, of which around 1,200 are malignant melanoma and 3,000 are squamous cell carcinomas (SCC)1. The incidence of skin cancer is rising. Risk factors for all skin cancer types include excessive sunlight exposure, sun bed use, fair skin and susceptibility to sunburn. For melanoma, a large number of benign melanocytic naevi and family history are risk factors. For SCC, multiple small actinic keratoses, high levels of previous UV-A photochemotherapy and immuno-suppression are also risk factors. Patients with multiple atypical naevi and a strong family history may have an increased risk of developing skin cancer. Skin cancers are very infrequent in people with dark skin and in children under 15 years. Guides for assessment include the 7-point checklist and the ABCD (Asymmetry, Border irregular, Colour irregular, Diameter increasing) checklist (www.sign.ac.uk/pdf/qrg72.pdf ). Some melanomas will have no major features. The dermoscope is a useful tool for trained clinicians screening pigmented lesions as it can increase diagnostic accuracy. Good practice points Lesions which are suspicious for melanoma should not be removed in primary care. All excised skin specimens should be sent for pathological examination. Lesions suspicious of basal cell carcinomas (BCC) may not require urgent referral, except those invading potentially dangerous areas. A change in a mole should be examined and reviewed (in 2 weeks) in pregnant women and women who have had a baby within 12 months. Referrals should be accompanied by an accurate description of the lesion (including size, pain and tenderness) and photos if possible, subject to clinical governance arrangements, to permit appropriate triage. A patient presenting with a skin lesion suggestive of cancer should normally be referred to a dermatologist, depending on local arrangements. Urgent suspicion of cancer referral Lesions on any part of the body which have one or more of the following features: change in colour, size or shape in an existing mole moles with Asymmetry, Border irregularity, Colour irregularity, Diameter increasing or >6mm new growing nodule with or without pigment persistent (more than 4 weeks) ulceration, bleeding or oozing persistent (more than 4 weeks) surrounding inflammation or altered sensation new or changing pigmented line in a nail or unexplained lesion in a nail slow growing, non-healing or keratinising lesions with induration (thickened base) any melanoma or invasive SCC or high risk BCC diagnosed from biopsy any unexplained skin lesion in an immuno-suppressed patient BCC invading potentially dangerous areas, for example peri-ocular, auditory meatus or any major vessel or nerve 16 • Scottish referral guidelines for suspected cancer Reference list 1. Information Services Division. Cancer incidence in Scotland (2011). 2013 [cited 12 Sept 2013]; Available at: http:// www.isdscotland.org/Health-Topics/Cancer/Publications/2013-04-30/2013-04-30-Cancer-Incidence-Report. pdf?64773195982 2. Scottish Executive. Scottish referral guidelines for suspected cancer. 2007 [cited 12 Sept 2013]; Available at: http:// www.sehd.scot.nhs.uk/mels/HDL2007_09.pdf Scottish referral guidelines for suspected cancer • 17 Appendices Appendix 1: Glossary Actinic keratoses Anaemia Dry scaly patches of skin caused by damage from years of sun exposure Condition where there is less than the normal number of red blood cells or less than the normal quantity of haemoglobin in the blood Atypical naevi An unusual mole whose appearance is different (larger than average and irregular in shape) from that of common moles Auditory meatus Either of the passages in the outer ear from the auricle to the tympanic membrane Barrett’s oesophagus An abnormal change in the cells of the lower end of the oesophagus thought to be caused by damage from chronic acid exposure Benign tumour A tumour that does not invade and destroy local tissue or spread to other sites in the body Carcinogenic Test used to measure the amount of this protein that may appear in the blood of some embryonic antigen people who have certain kinds of cancers, especially large intestine (colon and rectal) test cancer Colorectal Relating to or involving both the colon and the rectum Consolidation Condition where the alveolar (tiny air sacs in the lungs) space now contains fluid instead of air Dermoscope Device used to examine moles through a thin layer of liquid to provide a highly accurate assessment of what is going on directly below the skin’s surface Dyspepsia Pain or discomfort in the chest or stomach, sometimes accompanied by symptoms (such as heartburn, bloating, belching, quickly feeling full after eating, nausea or vomiting), that may develop soon after eating or drinking Dysphagia Interference of the swallowing mechanism that occurs within 5 seconds of the swallowing process Dyspnoea Difficulty or pain in breathing Epididymo-orchitis Inflammation of the epididymis (the coiled tube that collects sperm from the testicle) and or testis, usually due to infection Epigastric pain Pain that is localised to the region of the upper abdomen directly below the ribs Familial adenomatous A rare, inherited condition that causes extra tissue (polyps) to form in the large intestine polyposis and in the upper part of the small intestine (duodenum) Finger clubbing Changes in the areas under and around the fingernails Gastrointestinal Relating to the stomach and intestines Haematuria Presence of blood in the urine Non-visible haematuria: blood that can only be detected with laboratory testing Haemoptysis Helicobacter pylori (H pylori) Hepatobiliary and pancreatic cancers Visible haematuria: blood that is obvious with the naked eye A condition in which someone coughs up blood from the lungs A spiral shaped bacterium that lives on the gastric epithelium under the mucus layer of the stomach and duodenum. The bacterium is thought to damage this mucus layer, which is the stomach and duodenum's natural protection from gastric acids Include cancers of the liver, gallbladder, bile ducts, and pancreas Hoarseness Abnormal voice changes Incidence Number of new cases of a condition in a defined population during a defined period and is typically expressed as the number of new cases per 100,000 population per year (or other 18 • Scottish referral guidelines for suspected cancer Jaundice Yellowing of the skin and the whites of the eyes Lymphadenopathy A chronic, abnormal enlargement of the lymph nodes Melanocytic naevi Moles that arise as a result of proliferation of melanocytes, the cells in the skin that produce pigment Metaplasia The transformation of one type of tissue into a different kind Metastasis Spreading of malignant disease from one part of the body to another through the bloodstream or the lymphatic vessels Mesothelioma Cancer of the mesothelial cells, which are the cells that make up the membrane (lining) that covers the outer surface of most of the body organs Obstructive jaundice A yellowish discolouration of the skin, the conjunctival membranes over the sclerae (whites of the eyes), and other mucous membranes caused by hyperbilirubinaemia (increased levels of bilirubin in the blood) as a result of interruption to the drainage of bile in the biliary system Odynophagia Pain on swallowing Oesophago-gastric cancer Cancer of the stomach and cancer of the oesophagus, also known as the gullet Peri-ocular Situated around the eye Phimosis A condition where the foreskin is too tight to be pulled back over the head of the penis (glans) Photochemotherapy A type of ultraviolet radiation treatment used for severe skin diseases Pleural effusion Collection of fluid between a lung and the chest wall Positive predictive value The probability that a person with a positive test result has, or will get, the disease Primary care Primary-level health, disability, social and community services care provided by a range of health workers including general practitioners, nurses, pharmacists and allied health care professionals Prostate specific antigen (PSA) test A test which measures the blood level of PSA, a protein that is produced by the prostate gland Rectal Relating to, or situated near the rectum Sebaceous cyst A benign or harmless growth which forms when the release of sebum (a fluid produced by sebaceous glands in the skin), is blocked Secondary care Public hospitals, hospital-based services and specialist services Squamous cell carcinomas (SCC) An uncontrolled growth of abnormal cells arising in the squamous cells, which compose most of the skin’s upper layers (the epidermis) Stridor A sharp high pitched sound made when air passes an obstruction in the upper airway (larynx) Supraclavicular Pertaining to the area above the clavicle or collar bone Symptoms and signs What the patient reports or what is observed that may indicate a condition or disease Persistent: refers to signs or symptoms that continue to occur beyond a period of time that would normally be indicative of a self-limiting condition Unexplained: refers to signs or symptoms where no diagnosis has been made to identify the cause after the patient has been assessed by a healthcare practitioner Urea and electrolytes test A test which includes the measurement of the urea, sodium, potassium, CO2 and chloride concentrations in venous blood Urinary tract infection Develops when part of the urinary tract becomes infected, usually by bacteria (UTI) Scottish referral guidelines for suspected cancer • 19 Appendix 2: Members of guideline development team - steering group Bob Grant Peter Hutchison Alistair Dorward Ann Graham Dawn Crosby Douglas Rigg Elaine Anderson Hilda Emengo Jacquie Dougall (from September 2013) Jim Little (until September 2013) Lisa Cooper Lorraine Sloan Moira Adams Paul Baughan Robert Atkinson Sally Arnison Sara Twaddle Shirley Fife Steven Beaven Chair Deputy Chair, General Practitioner, NHS Dumfries and Galloway Consultant Respiratory Physician, NHS Greater Glasgow and Clyde Junior Doctor, NHS Lothian Head of Service Strategy and Policy, Teenage Cancer Trust General Practitioner, NHS Greater Glasgow and Clyde Consultant Breast Surgeon, NHS Lothian Health Services Researcher, Healthcare Improvement Scotland Cancer Delivery Programme Manager, Scottish Government Cancer Delivery Programme Manager, Scottish Government Clinical Team Leader, NHS24 Primary and Community Care Programme Manager, MacMillan UK Patient and carer representative General Practitioner, NHS Forth Valley Patient and carer representative Pharmacist, NHS Lothian Director of Evidence (Interim), Healthcare Improvement Scotland Consultant Cancer and Palliative Care Nurse, NHS Lothian General Practitioner, NHS Tayside 20 • Scottish referral guidelines for suspected cancer Appendix 3: Members of guideline development team - subgroups Lung cancer guideline team Bob Grant Alistair Dorward Chris Miller Colin Selby Diana Borthwick Douglas Rigg Jayne Oliver Lorraine Dallas Louise Gorman Luke Daines Sarah Muir Chair Consultant Respiratory Physician, NHS Greater Glasgow and Clyde Pharmacist, NHS Forth Valley Consultant Respiratory Physician, NHS Fife Lung Clinical Nurse Specialist, Edinburgh Cancer Centre General Practitioner, NHS Greater Glasgow and Clyde General Practitioner, NHS Forth Valley Director of Information and Support, The Roy Castle Lung Cancer Foundation General Practitioner, NHS Forth Valley Junior Doctor General Practitioner, NHS Forth Valley Breast cancer guideline team Bob Grant Ann Graham David Stevenson Elaine Anderson Elizabeth Smyth Hilary Campbell Moira Adams Pam Chisholm Peter Hutchison Philippa Whitford Rosalie Dunn Sarah Muir Chair Junior Doctor, NHS Lothian General Practitioner, NHS Forth Valley Consultant Breast Surgeon, NHS Lothian Consultant Breast Surgeon, NHS Grampian Head of Scotland Services, Breast Cancer Care Patient and carer representative Lead Pharmacist, Lothian Palliative Care Network General Practitioner, NHS Dumfries and Galloway Consultant Breast Surgeon, NHS Ayrshire and Arran General Practitioner, NHS Lanarkshire General Practitioner, NHS Forth Valley Lower gastrointestinal cancer guideline team Bob Grant Ann Graham Emma Anderson Helen MacLeod Hugh Brown James Mander Janice Oman Michael Fyall Paul Horgan Rhoda Abel Robert Atkinson Steven Beaven Chair Junior Doctor, NHS Lothian Scotland Operations Manager, Bowel Cancer UK General Practitioner, Central and Eastern Cheshire Primary Care NHS Trust General Practitioner, NHS Ayrshire and Arran Consultant Colorectal Surgeon, NHS Lothian Pharmacist, NHS Forth Valley General Practitioner, NHS Forth Valley Consultant Colorectal Surgeon, NHS Greater Glasgow and Clyde General Practitioner, NHS Forth Valley Patient and carer representative General Practitioner, NHS Tayside Scottish referral guidelines for suspected cancer • 21 Oesophagogastric, hepatobiliary and pancreatic cancer guideline team Bob Grant Peter Hutchison Alastair MacMillan Allan Lapsley David Stevenson Irfan Ahmed Kate Cunningham Lindsay Campbell Louise Gorman Neil Pryde Sami Shimi Stuart Paterson Chair Deputy Chair, General Practitioner, NHS Dumfries and Galloway Consultant Gastrointestinal Surgeon, NHS Fife Chair, Oesophageal cancer has reached everywhere (OCHRE) General Practitioner, NHS Forth Valley Consultant Upper HPB Surgeon, NHS Grampian Campaign Director, OCHRE Managed Clinical Network National Manager for Sarcoma, HPB and Neuro Cancers General Practitioner, NHS Forth Valley General Practitioner, NHS Fife Consultant Gastrointestinal Surgeon, NHS Tayside Consultant Gastroenterologist, NHS Forth Valley Urological cancer guideline team Bob Grant Peter Hutchison Adam Gaines Alan McNeil Alistair Haw Chris Miller David Stevenson Hugh Brown Justine Royle Michael Fyall Steven Beaven Chair Deputy Chair, General Practitioner, NHS Dumfries & Galloway Director, Prostate Scotland Consultant Urologist, NHS Grampian Campaigns and Media Manager - Scotland, Prostate Cancer UK Pharmacist, NHS Forth Valley General Practitioner, NHS Forth Valley General Practitioner, NHS Ayrshire and Arran Consultant Urologist, NHS Lothian General Practitioner, NHS Forth Valley General Practitioner, NHS Tayside Skin cancer guideline team Bob Grant Peter Hutchison Alex Holme Colin Fleming David Stevenson Douglas Rigg Leigh Smith Louise Gorman Mark Darling Neil Pryde Chair Deputy Chair, General Practitioner, NHS Dumfries and Galloway Consultant Dermatologist, NHS Lothian Consultant Dermatologist, NHS Tayside General Practitioner, NHS Forth Valley General Practitioner, NHS Forth Valley Chair, Melanoma Action and Support Scotland (MASSCOT) General Practitioner, NHS Forth Valley Consultant Dermatologist, NHS Greater Glasgow and Clyde General Practitioner, NHS Fife 22 • Scottish referral guidelines for suspected cancer Appendix 4: Equality and diversity The Scottish Government and Healthcare Improvement Scotland are committed to equality and diversity in respect of the nine equality groups defined by age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion, sex, and sexual orientation. The guideline development process has been assessed and the guideline is expected to have a positive impact on certain age groups (depending on the tumour type) and more deprived populations in Scotland. The completed equality and diversity checklist is available on www.healthcareimprovementscotland.org Scottish referral guidelines for suspected cancer • 23