South West Strategic Clinical Network Somerset, Wiltshire ...

South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services

Meeting of the Breast Site Specific Group (SSG)
Tuesday 13th January 2015
Academy Suite 1, Holiday Inn, Bond Street, Bristol, BS1 3LE

Notes
(To be agreed at the next Breast SSG meeting)

This meeting was sponsored by Roche & Novartis

Chair: Dr Dorothy Goddard Actions:

1. Welcome and apologies

Please see the separate list of attendees and apologies uploaded on the SWSCN website
2. Review of last meeting’s notes ( June 27th 2014) and Network Update

It was noted that the presentation given by Dr Ahmed on Metastatic Bone Health and Breast
Cancer Treatments at the last meeting was of great interest and educationally beneficial for the SSG
members.

It was decided to postpone the action to send questionnaires to the SSG members about the
current practice of sentinel lymph node (SLN) biopsy until after the Association of Breast Surgery
(ABS) meeting later this month. The commissioning groups have asked for the SSG members to
provide consensus regarding what will be required when offering sentinel node biopsy service
(SNB), so that the capacity for funding the service can be decided.

All other subject matters from the previous notes that are relevant for further discussion will be
addressed within the current SSG meeting.

Network Support Service Update

The cancer network is no longer called ASWCS. To reflect the addition of Gloucestershire Hospitals
to the network it is now called Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer
Services. Gloucestershire will be joining the SSGs where the patient referral pathways gravitate
south, or where they might otherwise find it beneficial to network. Gloucestershire clinicians have
been invited to join the breast SSG.

The SSG Support Manager, Helen Dunderdale (HD), and SSG Support Administrator, Samantha
Larsen (SL), have now been in post for 5 months. Their posts will be funded for one year by the
South West Strategic Clinical Network. Funding for the posts after this year will be provided by the
acute Trusts, with the cost of the SSG service divided, based on Trust size (calculated from numbers
of cancer treatments), plus the number of SSGs within the region in which each Trust would
participate. This has been agreed by all Trusts.

Any operational issues that are identified within the SSG meetings will be escalated to the Cancer

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South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
Operational Group, and any funding issues will be escalated to the commissioning groups via the
South West Strategic Network Cancer Manager, Jonathan Miller.

Commercial sponsorship will be sought to assist with funding venues and refreshments for the SSG
meetings.

Continual Professional Development accreditation from the Royal College of Physicians will be
applied for when the SSG meetings have educational content.

HD has been nominated by the SSG Chairs as the NHS member of staff responsible for user
representatives’ issues and information. Nicky Gravestone and Pat Eagle are both happy to be user
representative members of the Breast SSG. They both have previous experience of various groups
and are also members of the SWAG user involvement group. Although this group is not meeting at
present, they are in touch via email and therefore able to feedback information from the SSG
meetings. HD is also in touch with the SWAG user group. SSG members are to inform HD if they
wish for patient and public feedback on any documentation, and she will ask the group if they are
willing to give their opinions.

The SSG Support Manager will create drafts of the following SSG key documents by April 2015 for
approval by the group by the end of July 2015:

 Constitutions
 Clinical Guidelines
 Work Plans
 Annual Reports

The SSG support team have been granted access to add content to the South West Strategic Clinical
Network website:

http://www.swscn.org.uk/networks/cancer/site-specific-groups/aswg-site-specific-groups-2/

Once notes and actions have been uploaded, the link will be emailed to the group. There will also
be sections added where it will be possible to upload GP referral information, information for SSG
members and patient and public information. SSG members are to inform HD and SL if they have
any content that would be beneficial to upload to the website.

The meeting notes of the Breast SSGs going back to 2010 are to be uploaded in the meeting archive HD

section on the website.

3. Clinical Guidelines

Network guidelines for extended endocrine therapy

Please see the uploaded presentation on the SWSCN website

Presentation by Charles Comins (CC)

The presentation prompted discussion about the current provision of extended endocrine therapy
across the Trusts within the Network. It was noted that the benefit of extending endocrine

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South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
treatment post the normal 5 year period for high risk patients was currently based on
circumstantial evidence; concrete results from research trials have yet to be published. It was also
raised that there was no long term evidence for the benefits of extending treatment with
aromatase inhibitors (AI) in relation to the potential toxicities that could result from the treatment,
such as weight gain and osteoporosis, and the impacts that these might have on overall survival.

SSG members from Royal United Hospital Bath said that they had looked into providing GPs with Agreed
clinical letters providing advice on how they might make the decision to continue endocrine
treatment, but it was then decided that it was more appropriate for this responsibility to remain
with the patient’s oncologist.

Currently, a range of different practices occur across the Network. NBT do not routinely
recommend extended AI therapy after 5 years. Yeovil are offering extended AI to high risk patients
who have had node positive grade 3 tumours. Taunton has a blanket policy to offer extended AI
therapy to all postmenopausal women. RUH and Gloucestershire have no fixed guidelines, but offer
extended AI to patients with high grade tumours, and explain about the current lack of evidence of
the benefit, allowing the decision to be patient driven.

ABS are currently revising the guidelines – to be fed back to network group by Simon Cawthorne SC
(SC) and agreed that CC should draft guidance for use throughout the network in line with the CC
recommendations from ABS and uploaded onto the SWAG SSG website. Once evidence from
research trials is provided, the guidelines will be amended accordingly and redistributed.

NBT currently have a process whereby radiographers are provided with a leaflet to give patients, at
the 5 year follow up mammogram, to prompt them to have their AI therapy reviewed. This will be
shared with the SSG members.

Discussion took place with regard to managing patients’ expectations when suggesting extending
their treatment. It was considered that patients should be encouraged from the outset to consider
their treatment as a dynamic process subject to change as information from clinical trials etc
becomes available.

Hot topics in radiotherapy

Please see the uploaded presentation on the SWSCN website

Presented by Mark Beresford

The randomised controlled research trial AMAROS, looked at the difference in survival if offering 5
weeks of radiotherapy (RT) in comparison to surgical resection for patients with a positive lymph
node in the axilla. It was noted that there was a slightly higher survival rate in the patients who had
surgery, but not statistically significant. Surgery was twice as likely to cause lymphoedema and
relapse results were similar. Therefore the trial concluded that treatment with either RT or surgery
had similar survival outcomes, but RT was less likely to cause lymphoedema.

By deciding not to clear the axilla, the full dataset required to stage a patient’s disease would be
incomplete. Without this information, a decision to give adjuvant chemotherapy to a patient could
be missed. There was a risk of under-treatment following neoadjuvant chemotherapy with

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South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
complete response on imaging - approximately 10% of nodes found to be positive after resection. It
was agreed there was currently insufficient evidence to suggest that it would be safe to leave
positive nodes at diagnosis in situ, although this did mean over-treating some patients by
performing axillary clearance with increased risk of lymphoedema. However, patients who are unfit
for surgery and for whom chemotherapy would present a high risk due to comorbidities should be
referred for RT.

The benefit of using sentinel node marker clips pre chemotherapy was recommended as a method
to keep track of which nodes might still need removing post neoadjuvant therapy.

Some of the results of the data from the AMAROS trial had been questioned by a lymphoedema
clinical nurse specialist, due to the indications that the occurrence of lymphoedema at one year
was greater that after 5 years, which did not seem to depict a typical picture.

There was some concern about the potential late effects of axillary RT and whether we are over
treating some patients to target Level 2 nodes but it was noted that RT fields could now be
targeted more precisely, providing a better dose to both level 1 and level 2 nodes due to the recent
improvements in XRT techniques that allowed these nodal fields to be covered by widening the
tangential beams.

SSG opinion on breast cancer versus cosmetic breast surgery

Alex Layard (AL), an Individual Funding Manager for the South West Commissioning Support Unit
(Bristol, Somerset and South Gloucestershire CCGs), is currently conducting a review of breast
surgery in the region. Part of her role involves assessing whether there is equity of access to
surgical procedures across different disease types. It has been raised that some breast cancer
patients may have multiple reconstructive surgical procedures, sometimes years after their breast
cancer has been resolved. AL asked the Breast SSG members to consider the following questions
and issue a statement in response to them:

When does a breast cancer patient become a cosmetic surgery patient?

Response: Breast cancer patients undergoing reconstruction as part of their treatment should Agreed
always be considered as separate to patients undergoing aesthetic / cosmetic breast surgery, even
though there will frequently be instances where aesthetic breast surgical techniques will be used in
the care of breast cancer patients. This is to ensure that the patient’s quality of life needs are met
after their treatment for cancer.

Should there be a maximum amount of breast reconstruction procedures? If yes, how many should
this be?

Response: Certain approaches / techniques in reconstruction will always require further Agreed
intervention e.g. implant based breast reconstruction. This should be predictable when planning
funding for reconstruction services. Complications to breast reconstruction should always be
covered, for example, a ruptured implant. A patient undergoing a particular reconstructive
technique will be discussed at MDT and a recommended treatment plan of potential operations
required will agreed by the onco-plastic team.

If deciding upon a maximum number of breast reconstruction procedures, how can surgery be

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South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
restricted and patients’ expectations managed in the most appropriate way?

Response: Reasonable restriction of surgery is best achieved by a clear consent process in the first Agreed
instance and setting of realistic expectations with patients in terms of what they can reasonably
expect, having undergone reconstructive breast surgery. If the patient has exceeded the expected
number of breast reconstructive surgeries and does not require a further operation due to a
complication, then they will be made aware that additional funding for their surgery may need to
be sought via another route.

Guidelines will be drafted to this effect and provided for the Individual Funding Manager. SC

The user representative present was asked to comment on the discussion. Pat Eagle’s (PE) opinion
was that the agreement seemed reasonable if a clear plan of expected surgeries was set down at
the beginning and there was an open door for any complications that might arise.

4. Co-ordination of Patient Care Pathways

Pathway review for discussion

Please see the uploaded presentation on the SWSCN website

Presentation by Ed Nicolle

An illustrative 62 day breast cancer patient pathway was discussed. From receipt of the two week
wait (2WW) referral from primary care, typically a patient letter for an appointment was received
within 24-36 hours, with the majority of patients being seen by 11.7 days. The most common
reason that patients were not seen within the required two weeks was due to patient cancellations,
raising the question of how aware patients might be that they have been put on a 2WW pathway
to rule out the possibility of suspected cancer. GP’s need to inform patient about the 2WW
pathway for non-urgent in addition to suspected cancer cases.

It was agreed by all that it would be preferable for patients under 30 with breast pain to be
referred via methods other than the 2WW referral forms, due to the strain that this presents on
the capacity of the breast clinics.

Some patients require time to consider the options before agreeing to surgery but this could not
pause the 62 day target, unlike an admitted care episode which can.

Discussion took place about the different methods for arranging patient appointments across the
network. TST contact patients directly via telephone when the 2WW referral is received, due to
concerns about the reliability of timely postage of letters within the area. Other Trusts send
appointments by post and follow this up with a text reminder. TST have removed the text reminder
as this seemed to cause distress due to its impersonal nature.

How a breach in the patient pathway is recorded for patients transferred between Trusts was
questioned. Currently the breach would sit between the Trusts. For a patient referred from the
breast screening service, the clock starts from the date of the second read of the mammogram with
agreement to call the patient for assessment.

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South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services

5. Patient Experience

Review of the National Patient Experience Survey

The Lead Cancer Nurses in the Network have asked for the CNS’s to discuss the Trust specific
cancer site results from the National Patient Experience Survey at every SSG meetings, aiming to
agree key points that demonstrate: Trust level best practice to be shared, Trust / network level
priorities identified for pathway improvements, actions required to address identified priorities and
progression of the action plans. The CNS’s at NBT provided an action plan for discussion within the
SSG, however there had been insufficient time for presentations from across the network. The
methodology of the survey and benefits to be gained from analysing data that many consider
inaccurate was discussed. Local patient experience surveys were considered to be more meaningful
measures of the patient experience. There were no significant issues across the Network raised by
the national cancer patient survey.

6. Survivorship

Survivorship update and feedback from teams

Please see the presentation uploaded on the SWSCN website

Presented by Dorothy Goddard

Due to the ever increasing population of patients living with and beyond cancer, the current follow
up systems are not sustainable, therefore new follow up methods need to be established to
provide the support that patients require to lead as healthy and active a life as possible, for as long
as possible. In order to achieve this, a risk stratified redesign of the follow up pathways is required,
which will be based on the clinical condition and individual needs of patients. Conventional follow
up leaves patients with various needs unmet, and has been found to be ineffective in the detection
of recurrence, with most recurrences of disease occurring outside of routine follow up.
Implementation of the Recovery Package to support self-managed follow up was described: This
consists of holistic needs assessments, treatment summaries, patient education and health and
well-being events. Access to remote monitoring and open access back into specialist services would
have to be made available. Implementation of these changes is one of the four priorities of the
commissioning groups, with the emphasis not on savings, but using the money more effectively.

It was noted that UH Bristol have been working to provide the extended end of treatment summary
as recommended in the recovery package. There was a CQUIN attached to this to ensure provision
for 80% of GPs and patients.

TST had looked into the electronic tool provided to complete the holistic needs assessment and
found it to be a very time consuming exercise. UH Bristol currently have two Band 4 support
workers to assist the CNS’s with implementing elements of the recovery package, and their
appointments have been found to be extremely beneficial. Health and well-being events are also
being established throughout all of the Trusts.

The Quality and Outcomes Framework (QOF) in primary care requires all GPs to give cancer
patients a Cancer Care Review – currently being updated.

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South West Strategic Clinical Network HD
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
At present, the number and outcomes of patients with metastatic breast disease are not recorded
accurately across the network, and a system for doing so needs to be established. There is a
pressing need for the provision of dedicated metastatic clinical nurse specialists across the
network. To be escalated to the cancer operational group.

Post radiotherapy late effects service

Please see the presentation uploaded on the SWSCN website

Presented by Karen Morgan (KM)

The group were invited to refer patients who may benefit from the RT late effects service to the
Beacon Centre. The presentation contains the details pertaining to this.

7. Quality indicators, audits and data collection

The SSG members were asked to suggest the next audits to be performed. A prospective audit of ZR
the management of the axilla post neoadjuvant therapy across the network is to be planned to see
how complete responders are managed, who is clipping the abnormal nodes, or removing post
chemotherapy. Zenon Rayter has volunteered to devise the audit.

Further ideas for audit are to be discussed outside the meeting All

8. Research

Update from the clinical research network

Please see the uploaded presentation of the SWSCN website

Presentation by Maxine Taylor

The Clinical Research Networks (CRN) is now aligned with the Academic Health Science Networks.
This does not exactly match the old Avon Somerset and Wiltshire SSG. However, the Cancer
Research Delivery Managers in both regions, Maxine Taylor (MT) for the West of England CRN, and
Wendy Cook (WC) for the South West Peninsula CRN, will continue to support the meeting by
providing the data for all Trusts. The West of England Network now consists of Gloucester,
Swindon, Bristol, Bath and Weston. Taunton and Yeovil are in South West Peninsula CRN. MT will
attend each SSG meeting.

Zenon Raytor (ZR) and Mark Beresford (MB) are the nominated leads for research for the Breast
SSG.

The recruitment for the research trial MAMO 50 was not reported in the presentation. The data on
the research report was sourced from the EDGE online database for research and taken from the
end of November, so it might be that the recruitment had not been reported on EDGE at that time.

The commercial study NOVILASE, to which NBT are currently the world leading recruiters was not
included on the report. The Research report from the CRN only records the trials open that are on

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South West Strategic Clinical Network
Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Services
the NIHR portfolio.

It was noted that there were now less high recruiting trials available, but three trials that had
potential to boost recruitment numbers were Age Gap, MAMO 50 and POSNOC.

9. Chairmanship of the SSG and any other business

Dorothy Goddard (DG) announced that she will be stepping down as Chair. Mark Beresford had Agreed by
expressed an interest in filling the role. SSG members

The SSG members extended their thanks to DG for her Chairmanship since 2010, and for
independently continuing to organise the meetings despite the dissolution of the cancer networks.

Date and time of next meeting

The date of the next meeting is to be confirmed, but will be planned for early July.

It was suggested that a venue further out of Bristol City Centre would be beneficial for the SSG
members coming from Taunton, Yeovil and Gloucestershire. The Holiday Inn at Filton and the
Penny Brohn Centre in Pill were suggested. To be confirmed.

-END-

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