Endocrine & Thyroid Network Site Specific Group Minutes
Friday 25th September 2015
Burrator Room, Lakeside Conference Centre, Roadford Lake
Attendees:
Tass Malik, PHT (Chair)
Amy Roy, PHT
Venkat Reddy, RCHT
Benjamin Rock, RCHT
Claire Barber, RDE
Gill Spyer, SD
John Hunter, TST
Wendy Cook, PCRN
Mel Chandler, PCN
Steph Murgatroyd, PHT
Robert Lavis, PHT
Jacqui Williams, RCHT
Chris Hamilton, RDE
Simon Hickey, SD
Richard Perriss, SD
Joanne Greedy, TST
Liz Boylan, PCN
Action
1.
2.
2.1
2.2
3
3.1
3.2
3.3
Welcome and Apologies
Tass Malik welcomed the group and noted apologies (see Appendix A).
Terms of Reference / Constitution update
Terms of Reference – to be updated to include the following:
 purpose to ensure equitable best practice across peninsula.
 focus on FNA’s / Ultrasounds / Infrastructure / Pathways for patients
moving between Trusts and how and when to move them back / better
pathways and communication.
 frequency of meeting – twice yearly
 membership
Constitution - each unit to check membership and any local information and
feedback any changes to LB. Nominated leads:
 TM – PHT
 VR - RCHT
 GS – SD
 CB – ND & Exeter
 EC- Taunton sommerset
Action: Nominated leads to review constitution
Action: LB to update Terms of Reference and Constitution and circulate to
members
Clinical Guidelines
Copy of Bristol Clinical Guidelines from Ed Chisholm to be circulated.
Action: LB to contact EC and circulate document
Medullary thyroid cancer Surgery – still being centralised at Plymouth as
directed by NHS England. A referral form has been designed for use between
Plymouth and referring trusts. All CNS’s have a check-list to follow. Follow-up
should be done locally where possible even if they require radiotherapy.
Taunton patients currently go to Exeter for this.
Some members feel there should be a truly centralised Medullary service
offering surgery, radiotherapy, therapeutic nuclear medicine and novel
chemotherapy agents. This should be achievable as the cases per year are
relatively small. Needs to be centralised for records, data collection and
auditing. There would be more clarity on CDF cancer drug funding if centralised.
TM/VR/G
S/CB/EC
LB
LB
3.4
3.5
3.6
3.7
3.8
4.
4.1
5.
5.1
5.2
AR said she is happy to monitor and manage medullary referrals. The problem is
that many cases have increasing palliative component and the management of
palliative bone mets would be better/ efficient dealt locally. More clarity on
funding of centralisation is also needed. Palliation (other than that involving TKI
and nuclear med) would be achieved with good communication with local
teams.
CH and AR agreed the viewpoints of other oncologists, e.g. Matthew Collinson,
need to be considered before any decisions made.
Generally agreed that medullary surgery with initial follow-ups should be
centralised, i.e. Plymouth with radiotherapy back in local centres.
Vandatanib can be given locally when palliative, but taking advice from
experience from Plymouth.
Action: CH to discuss with Andrew Goodman and Petra Jankowska and report
back to TM and AR.
Pathways for anaplastic thyroid cancer: The group discussed the possibility of
anaplastic thyroid cancer, being centralised. It is difficult to have a standard
approach for anaplastics as it is very varied. Agreed these need to be discussed
at local MDT. There is usually some urgency regarding the airway surrounding
anaplastic thyroid cancer which makes regional MDT discussions untimely. Laura
Moss is collecting info to build up tissue bank database in Wales. The group
agreed to a 3yr retrospective audit on anaplastic thyroid cancer - THM will
organise the proforma.
Action: TM to obtain copy/access to database.
Access to New Drugs - Suggested that the NSSG might give support / novel
agents when requesting information. A New drug, Lenvima, same price as
Sorafenib is not available on Cancer Drug Fund as the Cancer drug fund not
adding anything new. Agreed to write them on behalf of the Network.
Action: AR to write to the Drug Fund on behalf of the Network to request
access to new drug.
Difficult Cases
TM: Presentation of a 67 year old female. Preoperative bilateral VC palsy with a
very large ant mediastinal thyroid mass. Pre and post op stridor. Asked for
opinions regarding airway management.
Re-innervation surgery of recurrent laryngeal nerve using ansa cervicalis been
rekindled in last 5-8 years. Historically the phrenic nerve has been used as a
natural pacemaker. Many people can survive with bilateral vocal cord palsy.
Expertise in this is limited throughout the world and it has unpredictable results.
TM has patients with good results and good speech. Lost nothing by trying to reinnervate.
Alternatives of tracheostomy feasible or posterior cordectomy would help avoid
a tracheostomy.
Audit
Suggested audits:
 Outcomes of medullary cancer in the last 5 years.
 Look at post-operative hypocalcaemia outcomes. Many nothing to do
with the surgery but are due to pre-existing Vit D derivative deficiencies
 Proforma for thyroid surgeons to complete at end of surgery. Assess
patient state pre-op and post-op. Guidance on what might affect
recovery.
Action: TM to draft parathyroid proforma for approval
CH
TM
AR

5.3
6.
6.1
6.2
Each trust to do 5-year review on anaplastic thyroid cancers., detailing
length of symptoms, management, survival and palliation
Action: TM to draft proforma.
 U3s from radiologists - this is perhaps too heterogenous group of
patients. What is in this classification? TM suggested one audit on the
interface between cytology and relation to final histology.
 Presentation by TM “Thy3 FNA outcomes”.
Research /Clinical Trials
Not many Thyroid cancer trials available at the moment. Most are in the USA.
Currently included with Head & Neck data. WC will send details to LB.
WC requested nomination for subspecialty lead for thyroid. Suggested that
Andy Goodman may agree to take on this role. ION trial still ongoing in Exeter.
Action: WC to contact AG
Dr Katy Newbold at the Marsden is undertaking a phase 2 trial for new TKIs in
Medullary cancer relapse.
Action: WC to send research info to TM so he can discuss at next meeting.
TM
TM
WC
WC
7.
7.1
Election of Chair
TM confirmed he is the interim Chair but is happy to carry on as Chair if that is
what the group would like. AR nominated TM as Chair and this was agreed by
TM and accepted by the Group. TM agreed to Chair this group for two meetings
per year for the next three years.
8.
8.1
Any Other Business
Patient Representation – agreed that CB would act as Patients Representative
Lead and CNSs from each trust would represent the patients’ views. The
representatives would not necessarily have to be present at the NSSG meetings,
but their views relayed to the team.
Date of Next Meetings
Friday 13th May 2016 in the Burrator Room, Lakeside Conference Centre,
Roadford Lake, Devon PL16 0RL 10:30-12:30pm
Friday 18th November 2016 in the Burrator Room, Lakeside Conference Centre,
Roadford Lake, Devon PL16 0RL 10:30-12:30pm
9.