Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Alliance
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1 Meeting of the SWAG Network Urology SSG Thursday 5 th July 2018, 13:30-17:00 Spire Specialist Care Centre, 300 Park Avenue, Aztec West Almondsbury, Bristol, BS32 4SY Chairs: Mr Jaspal Phull (JP) & Ms Lucinda Poulton (LP) NOTES (To be agreed at the next SSG Meeting) ACTIONS 1. Welcome and apologies Please see the separate list of attendees and apologies uploaded on to the SWCN website here. 2. Review of last meeting s notes and actions As there were no amendments or comments following distribution of the notes from the SSG meeting on 15 th March 2018, the notes were accepted. Actions: Cancer Research UK Multi-Disciplinary Team (MDT) Recommendations: A meeting of the SWAG Cancer Clinical Leads will be held on Monday 16 th July 2018 for the purpose of defining a loco-regional approach to MDT reforms. Minutes from the meeting will be circulated and the resulting outcomes will be discussed at the next SSG meeting. Research resources: The shortage in research workforce, previously identified by the SSG, has been escalated to Research Delivery Manager David Rea (DR). This has yet to be resolved and will be raised again. A presentation on current recruitment figures and list of open trials and trials in set up provided by DR will be circulated. Suspected urological cancer referral forms: The Bath and North East Somerset Clinical Commissioning Group (CCG) did not insert the local laboratory PSA values prior to publishing their version of the suspected cancer referral form. This has been raised with the Cancer Manager in RUH Bath, who will advise the CCG to amend the form. The potential to agree a regional PSA assay will be discussed outside the meeting; laboratory managers in Gloucestershire are in the process of assessing the significance associated with using the different PSA ranges. JP JP Review of surveillance scans and tracking processes for renal cancer patients: To be revisited prior to a future meeting. Somerset Cancer Register (SCR) Modifications: Consultant Urologist Salah Albuheissi has sent a proposal for improvements to the SCR for recording of cystoscopic findings and subsequent treatments and surveillance of bladder cancer, and is awaiting a response. SCR Page 1 of 7
2 The SCR are developing a surveillance tracking system for prostate cancer and will be invited to give an update at the next meeting. The potential for data from the True North project to be made available, including from the patient perspective, will also be explored. The requirement for a SWAG wide tracking system for non-62 day patients with bladder cancer: Escalated to the Cancer Alliance (CA) Programme Manager. The agenda of the next CA board meeting will be sent to the Urology MDT Chairs. 3. Research 3.1 Clinical trials update Presented by Jaspal Phull (JP) There is an opportunity to collaborate with Dr Brunolf Lagerveld (Amsterdam), who has collated a large amount of data on renal patients, by submitting local information for the purpose of audit and service evaluation. This could be used to look at the pros and cons of different treatment modalities, including prediagnostic imaging and rationalisation of surveillance imaging. There is also a prospective randomised controlled trial due to open in approximately 8 weeks looking at pre-diagnostic imaging. Consultant Urologist Frank Keeley has expressed an interest in the trial. SWAG surveillance guidelines are due to be revised at the end of the year. The regional bone scan audit is in progress, having been completed in both North Bristol Trust and RUH Bath. Further data will be collated from the other centres for presentation at the next meeting; the plan is to submit the results for publication. JP 3.2 Future applications of new technology Presented by Matthew Lloyd (ML) Extensive research on the action of Alpha-methylacyl-CoA racemase (AMACR) has been underway in the University of Bath. Please see the presentation for further details. The fatty acid, which is released from Chlorophyll after consumed by cows, enters the food chain through milk and beef consumption. Cancer cells, including prostate cancer, have been shown to have a higher uptake of AMACR in comparison with other tissues; accurate staining of AMACR has been developed, and there is now the potential for a fluorescent substrate to be used to detect its activity. The potential for this to be developed into clinically useful applications is currently being explored. Page 2 of 7
3 It is recommended that the AMACR team link with teams undergoing work on the detection of circulating tumour cells. 4. Patient pathways 4.1 Informal feedback and update from the prostate pre-biopsy MRI pathway working group Presented by Raj Persad (RP) With results from PROMIS and other clinical trials showing the importance of using multi-parametric MRI to triage diagnostic tests for prostate cancer and, as prostate cancer is the largest contributor to the cancer waiting time 62 day breaches, the Cancer Alliance (CA) prostate project aims to truncate delivery of the pathway across the region, with consideration of the different capacity, manpower, and other logistical issues present in each centre. Each centre has completed a questionnaire and discussions have taken place to ensure a collaborative approach. A gap analysis will be developed in the near future so that it will be possible to report back to the Clinical Commissioning Groups (CCGs) where investment is required. In the interim, centres will implement the pathway using different techniques based on available resources. One process already implemented is for a clinic appointment and MRI to be arranged on the same day, with a follow up phone call to the patient when the MRI has been reported to call them back for a biopsy or confirm that a biopsy is not required. The reduction of unnecessary biopsies and the resulting reduction in sepsis rates will have a cost benefit. MRI reporting times currently vary, with some centres having only one trained radiologist available. A dataset, developed to audit the project, is currently being tested, and should be available in July Funding will be made available to assist with the data collection. The data will be anonymised to comply with Information Governance, but can be analysed locally. Any issues with funding or logistics are to be escalated to the project team. Local radiologists have signed up to record their outcomes in the database; information uploaded centrally will not be attributed to the individual radiologist. It is recognised that there will be a tendency to err on the side of caution and report scans that are ambiguous as PIRAD III. Data will be analysed after 6 months to assess where further training and support are required. Ultimately the aim will be to identify more cancers at an earlier stage and ensure that the same standard of care is available across the region. It is hoped that the data will indicate progress towards meeting the cancer waiting Page 3 of 7
4 times 28 day target in Spring An audit to compare targeted versus systematic biopsy is recommended. To be allocated 4.2 Transfer of cancer patients between organisations after treatment In response to an incident when a patient was lost to follow up after being transferred back to a referring centre, the regional Cancer Operational Group (COG) has asked that each SSG review a draft standard operational procedure to confirm the administrative contact points for referrals between organisations after treatment, and clarify the process for the receiving provider to confirm that the patient has been received, and the follow-up booking processes instigated. The solution should not be reliant on an individual; the Colorectal Clinical Nurse Specialists (CNSs) have agreed to communicate transfers via their generic addresses. This would not be an appropriate solution for the Urology CNS teams. Individual Trusts will seek an alternative mechanism. There was some concern about how this could be achieved and remain compliant with General Data Protection Regulations (GDPR); Information Governance Departments will be contacted for advice. CNS teams The user representative member of the group pointed out that being followed up appropriately would be far more important to a patient than Trust compliance with GDPR. 5. Clinical guidelines 5.1 Pathology update and TNM 8 th Edition Presented by John Mitchard (JM) Two staging systems are currently in use which while broadly similar, have some important differences: The Union for International Cancer Control (UICC), Eighth Edition, and the American Joint Committee on Cancer (AJCC), Eighth Edition. The AJCC publication had multiple significant amendments following the first, second and third print runs, although none were related to urological cancers; a few amendments of lesser significance were made to the UICC publication. The main change for renal cell carcinoma is the definition of pt3 tumours (building on findings of ISUP 2014 consensus): T3 Tumour extends into major veins or perinephric tissues but not into the ipsilateral adrenal gland and not beyond Gerota fascia T3a - Tumour extends into the renal vein or its segmental branches, or tumour invades the pelvicalyceal system or tumour invades perirenal and/or renal sinus fat (peripelvic) fat but not beyond Gerota fascia T3b - Tumour extends into vena cava below diaphragm. T3c - Tumour extends into vena cava above the diaphragm or invades the Page 4 of 7
5 wall of the vena cava. Please see the presentation for details of further changes to kidney grading, bladder staging and grading, renal pelvis and ureter, urethra, penis, prostate and testes. 5.2 Do Patients with High Risk Non-Muscle Invasive Bladder Cancer (NMIBC) Require CT Thorax? Presented by Neil Gilliland (NG) There is a variation in the SWAG and NICE clinical guidelines for high risk NMIBC, with the SWAG guidelines recommending CT thorax for this cohort of patients, whereas NICE restrict this to patients with muscle-invasive bladder cancer. A retrospective audit was undertaken from August 2016 to October 2017 to determine which guidelines were being followed and the related patient outcomes. Results informed the following conclusions: There was no evidence of chest metastasis on any patient with high risk NMIBC who had a CT Poor compliance with SWAG guidelines Good compliance with NICE guidelines Some patients are having an unnecessary CT thorax NICE guidance and SWAG guidance are different. Discussion: Considering the evidence and need to rationalise the use of resources, SWAG guidelines will be amended to match NICE guidelines. Ms Joanne Cresswell will be invited to attend a future SSG meeting to share key points on the issue with the SSG. /JP/LP 6. Living With and Beyond Cancer (LWBC) 6.1 LWBC Transformation funding and risk stratified follow up Presented by Catherine Neck (CN) Draft follow up guidelines for prostate cancer had been circulated after the last SSG meeting for further comments. The pathway, which aims to reduce the number of follow up appointments where deemed safe and appropriate to do so, Page 5 of 7
6 was reliant on having access to a remote tracking system. The True North system is available in RUH Bath, and has just been launched in Gloucestershire. Several amendments were suggested: Surveillance testing: Addition of a sentence to refer urgently if spinal cord compression is suspected Active surveillance: PSA every three months for those patients suitable for radical treatment and MRI and biopsy at 2 yearly intervals to be amended to repeat if there is a clinical reason to do so. Patients on active surveillance were not to be put on the PSA tracker, as they are to remain on internal tracking systems Radical Prostatectomy: To rephrase consistent PSA rise to if there is a detectable PSA on 2 occasions, the patient is to be recalled to oncology Annual PSA should be for life Hormone Therapy: To amend section to Hormone Therapy Including Intermittent Action. Intermittent hormone therapy should be added, and advice on Dexa-scans for those on long term hormone replacement therapy. Guidelines on intermittent hormone therapy will be ed to GP/CCG representative Alison Wint. NICE guidance is due to be updated in the near future which will guide this work. The follow up guidelines will be amended and recirculated. Active surveillance will be removed and looked at by the SSG Chairs as a separate piece of work. There may need to be a two-tiered surveillance process, looking at lower and higher risk super-imposing frailty and comorbidity assessments at follow up points. The validated tools available to measure pre and post-operative continence will be discussed at a future SSG meeting. LP CN JP/LP It was noted that all prostate patients except those with pelvis/brachial/seminal vessel involvement were now treated as per the reduced fractionation recommended by the CHHIP trial. Treatment summary templates have now been ratified and will be added to the website under the section for SSG member. Treatment summary templates developed by the RUH team will be sent to CN. CN RH 7. Patient experience 7.1 User Representative update The user representative member of the group had heard of some concerns relating to men requesting PSA tests, and reluctance from GPs to provide it. There is guidance for GPs to follow which patients can also access here. Page 6 of 7
7 Research is underway at Bristol University on prostate cancer aetiology, led by Professor Richard Martin; this has the potential to bring discussion of prostate cancer screening back on to the agenda. The Bristol based Prospect prostate cancer support group is steadily increasing in membership, but it was thought that information on the charity might not be reaching as many men as they could during diagnosis and treatment. Patients are currently supplied with an information sheet about the charity at Living Well days. The support groups take place 4 to 5 times a year, and are very well attended. 8. Clinical opinion on network issues 8.1 Governance issues Inappropriate two week wait referrals. GPs do not universally have access to the most up to date version of the suspected urological cancer referral pro-forma. Gloucestershire has received 3-4 different versions of the form in the past week. The BNSSG had released updated versions of the forms with their communications to GP surgeries yesterday. GPs need to be informed that they must delete previous versions from their systems and download the latest form from EMIS. This will be escalated to the relevant CCGs. The RUH MDT is looking at ways to communicate information on inappropriate referrals; results will be shared. Information on the different PSA Assays used across the region will be gathered and sent to the SSG Chairs. 9. Quality indicators, audit and data collection 9.1 Seasonal audit: Blood in pee campaign The Blood in Pee campaign will commence on Thursday 19 th July 2018 and continue until the end of September. The impact on services will be audited. 10. Any Other Business Guidelines for the surveillance of people with a positive Lynch syndrome mutation have been drafted for ratification by the Colorectal SSG. This includes the following recommendation for surveillance of the urinary tract: Surveillance (by urine cytology and ultrasound) of MSH2 carriers should only be performed in a research setting or if results are systematically collected in a Lynch syndrome registry, annually, from age Once these have been ratified, the responsibility for management of these patients will be discussed further with the Chair of the Colorectal SSG. Date of next meeting: Thursday 11 th October 2018, 13:30-17:00 -END- Page 7 of 7
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