Download - Breast Cancer 12
-
8/10/2019 Breast Cancer 12
1/40
Improving outcomes and experiencesfor older women with breast cancerA policy brieng by Breast Cancer Care
personal experienceprofessional support
Supported by Age UK
-
8/10/2019 Breast Cancer 12
2/40
Many thanks to Edna, Grace, Judy, Mary and Shirley for sharing their breast cancer
experiences with us. We have used quotes from their stories throughout this brieng.
Many thanks also to the following professionals who contributed articles for this brieng.
Mr Kwok-Leung Cheung, Clinical Associate Professor, Division of Breast Surgery,
University of Nottingham
Dr Deb Fitzsimmons, Reader, Swansea University
Dr Lindsay Forbes, Public Health Physician and Clinical Senior Lecturer, KCL Promoting
Early Presentation Group, Kings College London
Dr Bernadette Fuge, Chair of Age Cymru
Professor Robert Leonard, Professor of Cancer Studies, Imperial College London and
Honorary Consultant Physician at Imperial College Healthcare NHS Trust
Elaine Murray, Community Liaison Ofcer, West of Scotland Breast Screening Service
Debbie Price, Age UK Shefeld
Professor Malcolm Reed, Professor of Surgical Oncology and Head of the Department of
Oncology at the University of Shefeld and Shefeld Teaching Hospitals Trust
Professor Amanda Ramirez, Director, KCL Promoting Early Presentation Group, KingsCollege London
Karen Scanlon, Head of Research and Evaluation, Breast Cancer Care
Laura Wilson, Breast Health Promotion Training and Support Ofcer, Breast Cancer Care
Wales, South West and Central England
Thank you to colleagues internally and to the following external people for their help with
this brieng: Emma Blows, PhD researcher at the University of Nottingham; Albha Bowe
and Hazel Brodie at Macmillan Cancer Support; Alice Fuller at the National Council for
Palliative Care; Tom Gentry at Age UK.
This brieng was prepared by Lizzie Magnusson, Policy Analyst, Breast Cancer Care.
-
8/10/2019 Breast Cancer 12
3/40
Contents
Introduction 1
Statement on cross-cutting inequalities 3
Foreword by Age UK 4
Section one: early diagnosis 5
Section two: treatment and assessment 11
Section three: information and support 19
Annexe one: biographies of contributors 27
Annexe two: references 29
-
8/10/2019 Breast Cancer 12
4/401
Improving outcomes and experiences for olderwomen with breast cancer
Introduction
This policy brieng is part of Breast Cancer Cares ongoing commitment to understanding and tackling
health inequalities and our vision that every person affected by breast cancer receives the best
treatment, information and support. Improving outcomes and experiences for older women with
breast cancerbuilds on our recent review of the evidence of breast cancer and inequalities, which
reveals some worrying gaps in experiences and outcomes among different groups, including older
women.
This brieng focuses on the key issues for older women affected by breast cancer and presents Breast
Cancer Cares recommendations for service improvements in three main areas:
early diagnosis treatment and assessment
information and support.
It is estimated that almost 10% of the total female population aged over 65 years is living with a diagnosis
of breast cancer (Cancer Research UK, 2011, citing Maddams et al, 2009). As the leading breast cancer
support and information charity in the UK, we are concerned that many older women may not be
receiving the level and type of support, treatment and information they need. We want to ensure that
our own services and information meet the needs of this group, as well as working with others to improve
this situation at all levels of delivery.
For this brieng, we have mainly focused on the issues affecting women aged 65 and above who,
typically, are likely to have retired from employment. We have only focused on women in this brieng
as most of the research available is drawn from studies with only female participants. This is because
the overwhelming majority of breast cancer cases are diagnosed in women: 99.4% in 2007 (WMCIU,
2011). The issues faced by men diagnosed with breast cancer are often distinct and deserve separate
attention these have been explored in Breast Cancer Cares policy brieng Men with breast cancer
(2005) and in our patient information publication also entitled Men with breast cancer (2011).
However, increasing age is a signicant risk factor for men and most men with breast cancer will be over
65 years so some of the content and recommendations in this brieng may be applicable to optimising
the care of older men with breast cancer.
-
8/10/2019 Breast Cancer 12
5/402
We know that older women with breast cancer have poorer relative survival rates, highlighting the
necessity to improve early diagnosis and ensure optimum treatment for this group. Breast cancer
risk increases with age and getting older is the second biggest risk factor after being female. Given
the increased risk faced by older women, it is clear that breast awareness and promoting prompt
presentation with symptoms are critical. Yet older women are rarely targeted by specic health
promotion initiatives and current evidence suggests that some older patients are being under-treated
in the UK even where there is no clinical reason for this conservatism. Much of the evidence reviewed
in this brieng focuses on experiences of primary breast cancer. More research is needed into theexperiences of older women diagnosed with secondary (metastatic) breast cancer 1. Breast Cancer
Cares campaigning work highlights that secondary breast cancer is a neglected area of
psycho-social research and an area in which health inequalities persist, such as a lack of access to
nurses with specialist skills and knowledge. Work to reduce these inequalities is being taken forward by
our Spotlight on Secondary Breast Cancer campaign.
This brieng is aimed at policy makers and healthcare professionals concerned with improving services
and the quality of life of older people with breast cancer in the UK. We look forward to working with these
groups and other partners who share our concern about improving outcomes and experiences for this
important group. Our work on this brieng has also been informed by older people living with breast
cancer and we look forward to continuing to work in partnership with them to ensure they receive thevery best standards of information, treatment and care available.
Jane Hateld
Director of Policy and Research (maternity leave commenced August 2011)
Breast Cancer Care
Liz Carroll
Director of Policy and Research (maternity cover from September 2011)
Breast Cancer Care
1Secondary breast cancer occurs when breast cancer cells spread from the rst, primary tumour in the breast to another
distant part of the body. A diagnosis of secondary breast cancer means that the cancer can be treated and controlled,
sometimes for years, but it cant be cured.
-
8/10/2019 Breast Cancer 12
6/403
Statement on cross-cutting inequalities
This brieng focuses on the inequalities faced by older women with breast cancer due to their age.
However, it is important that all healthcare professionals and policy makers bear in mind the potential
impact of cross-cutting inequalities. An older woman might also face inequalities that are linked to her
ethnicity, location, socio-economic status, sexual orientation or disabilities. Inequalities are not mutually
exclusive. Throughout this brieng we invite the reader to bear in mind the importance of taking other
inequalities into account and to avoid producing one-size ts all solutions to inequalities faced due to
older age that do not respond to the subtleties of the experiences of real people in their everyday lives.
In some of our recommendations in this brieng we refer to the importance of using images in health
information of older women of different social and cultural groups. This includes using images of older
women of different ethnicities, in same-sex and in heterosexual relationships and with different visible
disabilities.
Breast Cancer Care produced Breast cancer and inequalities: a review of the evidence (March
2011) which summarises how people with breast cancer are likely to be affected in the main areas of
inequality. This is a useful starting point from which to view the range of inequalities by which a person
may be affected, and to consider how cross-cutting inequalities may interact. We have also highlightedissues faced by lesbian and bisexual women diagnosed with breast cancer in our policy briengLesbian
and bisexual women and breast cancer(Breast Cancer Care, 2011b).
-
8/10/2019 Breast Cancer 12
7/404
Foreword by Age UK
Breast Cancer Cares report comes at a very important time for age equality in the NHS. In 2010,
parliament passed the Equality Act, nally setting the framework for age to be a protected
characteristic in the delivery of goods and services. In simple terms, this means people cannot be
discriminated against because of their age when using a service. From April 2012, as long as the nal legal
hurdles are passed, this will apply to the NHS.
However, we know that many people are not convinced that age discrimination exists in the NHS. We
suspect this is, in part, because this kind of discrimination is self-fullling: if society fundamentally
undervalues a particular group, it is unlikely that people will see when that group is not receiving a fair
deal. Age UK believes this is something many older people have to live with on a daily basis.
This timely report reveals some of the obstacles faced by older women in getting the diagnosis and
treatment they need for their breast cancer. These include poorer access to aggressive treatments and
inadequate public health messages aimed at older women. Age UK believes such issues are often rooted
in misplaced assumptions that older people are less likely to benet from treatment or that older people
are somehow peripheral to the NHS rather than its largest users.
Cancer remains one of the areas of care that provides the strongest evidence for age discrimination. It
serves to highlight the challenges in assessing a persons health without resorting to ageist stereotypes.
However, it also highlights the very denite outcome of failing to treat older people fairly: higher excess
mortality and therefore lives cut short.
As the health service moves through a period of extensive change, this report is an important reminder
that the NHS needs to do more to make sure older people can expect the same level of treatment as
other age groups. The public must better appreciate getting older is a major risk factor for breast cancer.
Fundamentally, we must establish a new baseline that recognises that a persons right to the bestpossible healthcare does not stop at 65, 75, or at any age.
Michelle Mitchell
Charity Director
Age UK
-
8/10/2019 Breast Cancer 12
8/405
Section one: early diagnosis
1.1 The importance of early diagnosisEarly diagnosis of breast cancer is important as it can mean that the cancer is diagnosed at a less
advanced stage with improved treatment options and outcomes. Lower relative survival rates for older
women with symptomatic breast cancers may be partly explained by delayed diagnosis (Richards et al,
1999; NCEI, 2010; Mller et al, 2010). The increased likelihood of sub-optimal treatment for older women
with breast cancer may also be a signicant factor. (See also Section two: treatment
and assessment.)
For women diagnosed with symptomatic breast cancers in 2002/3 (that is, excluding those cancers that
are detected through screening), ve year relative survival2 was 86% in women aged 40-49 years but
only 62% in women aged 80 years and above. One year relative survival was around 98% in women aged
40-49, but only 86% in women aged 80 and over. For women whose breast cancers were
screen-detected, there was little variation in relative survival by age with all age groups having rates of
around 100% (WMCIU, 2011). This shows the value of early detection and the potentially adverse effects
of late presentation with symptoms.
I was breast aware and found a lump high up on my left breast. I went
straightaway to the GP and was referred ve days later to a hospital
cancer unit. Ive been very lucky that it was caught early with no
involvement of lymph nodes at all.
Edna, 80 (75 at diagnosis)
My right breast had enlarged to the point that my bra was digging in and
I then noticed the area around my nipple had changed colour gone
white and there was some thickening. I made an appointment with my
doctor and he immediately suggested I visit the breast clinic and made
me an urgent appointment for the following week.
Mary, 67 (diagnosed this year)
1.2 Awareness of breast cancer riskGetting older is the second biggest risk factor for developing breast cancer after being female. In 2007,
81% of breast cancers were diagnosed in people aged 50 and over; 31% of female breast cancers werediagnosed in women aged 70 and over (WMCIU, 2011). However, many older women are unaware of their
increased breast cancer risk (Grunfeld et al, 2002; Breast Cancer Care, 2003; Moser et al, 2007; Linsell
et al, 2008; Collins et al, 2010); have little knowledge about non-lump symptoms (Grunfeld et al, 2002;
Linsell et al, 2008; Collins et al, 2010); do not check their breasts regularly (Linsell et al, 2008; Collins et
al, 2010) and are not condent about detecting breast changes (Linsell et al, 2008).
A survey of 456 women over 70 showed that 41.5% did not know that breast cancer risk increases with
age; 34.6% thought that the risk remained the same as they got older and 14.2% thought it was lower for
women over 70 (Collins et al, 2010).
2Relative survival rates are the differences that emerge when comparing survival in a particular patient group with survivalin the general population. For example, if the one year relative survival rate for a particular patient group is 100%, then the
same number of people in the group are alive after one year as in the general population.
-
8/10/2019 Breast Cancer 12
9/406
1.3 Late presentation with breast cancer symptomsThere is strong evidence that older women are more likely to present later than younger women with
breast cancer symptoms (Ramirez et al, 1999; NCEI, 2010).
A study of 69 women (older than 65) found that 42% of the participants had delayed their presentation
for 12 weeks or more, with 7% delaying for over a year (Burgess et al, 2006).
Delayed presentation with breast cancer symptoms and low levels of breast awareness
3
may beparticularly signicant for older women from deprived areas and for older black and Asian minority
ethnic (BAME) women. There is strong evidence from several studies that people from more deprived
groups tend to be diagnosed with more advanced disease, which may indicate delays in presenting
symptoms to a doctor (Macleod et al, 2000; Adams et al, 2004; Downing et al, 2007; Cuthbertson et al,
2009). Research that formed the basis of Breast Cancer Cares 2005 Same Difference campaign found
signicant differences in levels of breast awareness and in breast cancer knowledge between different
ethnic groups, and between different ethnic groups and the general population (Scanlon and Wood,
2005). More research is needed into specic breast awareness issues for older women from deprived
areas and for older women from BAME groups. More research is also needed into what kinds of initiative
might be effective in reaching these groups of older women with breast health messages.
Breast Cancer Cares policy brieng Lesbian and bisexual women and breast cancer also highlighted
that lesbian and bisexual women may delay presentation with suspicious breast symptoms. Again, more
research is needed into the specic issues for older lesbian and bisexual women (Breast Cancer Care,
2011b).
1.4 Breast screening uptakeBreast screening offers the opportunity for breast cancer to be diagnosed sooner, which may in turn
improve prognosis. In the UK, women between the ages of 50 and 70 are routinely invited for screening
every three years. The age range is currently being extended down to 47 and up to 73 years in England in
some pilot sites (DH, 2007; DH, 2011).
The end of screening invitations at 70 (or 73 in some pilot sites in England) can lead to a
misinterpretation among older women that they are at less risk (Grunfeld et al, 2002; Moser et al, 2007;
Collins et al, 2010). An emphasis in the media on younger women with breast cancer may exacerbate
this (Breast Cancer Care, 2003; Moser et al, 2007).
Women over 70 (or 73) are still entitled to breast screening every three years and can request this by
phoning or writing to their local breast screening unit. This information should be given to women at their
last invited breast screening appointment, including a card to record future appointments and a contact
number. They should also be informed of the importance of remaining breast aware and told aboutpossible signs and symptoms of breast cancer to look out for and report to their doctor.
Evidence suggests that most women over the upper age limit do not request continued screening. The
Second All Breast Cancer Report states that despite 31% of all female breast cancers being diagnosed
in patients aged 70 and over, only 7% of these cases were diagnosed through screening (WMCIU, 2011). A
study on older women and breast screening, found that 62% of respondents (479 women aged over 70)
believed that if screening over the age of 70 was benecial they would have received invitations from the
NHS (Collins et al, 2010).
3 Breast awareness involves a woman getting to know how her breasts look and feel, so that she knows what is normal for her
and feels more condent about noticing any unusual changes.
-
8/10/2019 Breast Cancer 12
10/407
A major barrier to extending the age range for invitations is the lack of evidence of the benets and risks
for women over 70. Life expectancy decreases as we age and older women have a much greater chance
of dying from conditions other than breast cancer, meaning that the survival gains from earlier detection
of breast cancer through screening reduce (Wyld, 2011). The age extension to 73 in pilot sites in England
is part of a randomised study that will provide new evidence on the implications of extending the breast
screening age range (DH, 2011).
Early diagnosis
Key points Breast cancer risk increases with age. In the UK, 31% of breast cancers in women are
diagnosed in patients aged 70 and over.
Many older women are unaware of their increased breast cancer risk, have little knowledge
about non-lump symptoms, do not check their breasts regularly and are not condent
about detecting breast changes.
Older women are more likely to delay diagnosis by presenting late to a doctor with
suspicious symptoms. Lower relative survival rates for older women with symptomatic
breast cancers may be partly explained by delayed diagnosis. (See also Section two:
treatment and assessment.)
Routine screening invitations ending at 70 (or 73 in some pilot sites in England) can lead
to a misinterpretation among older women that they are at less risk of developing breast
cancer after this age.
Breast Cancer Cares recommendations
1. Those working on breast cancer awareness projects in the statutory and voluntarysectors should consider piloting targeted campaigns for older women and sharing the
evaluated results through publications or conference presentations. The design of such
campaigns should involve consultation with older women.
2. Any imagery in breast health promotion and screening information should include
pictures of older women of different social and cultural groups to make it clear that this
information is relevant to all older women.
3. Many older women have contact with their local doctors surgery. Local surgery waiting
rooms should display information about breast awareness and screening (such as the
information available free of charge from Breast Cancer Care and the Over 70? You are
still entitled to breast screening leaet from NHS Cancer Screening Programmes). GPs
and practice nurses should use appointments with older women (such as well woman
clinic appointments) as opportunities to discuss breast awareness and breast screening,
directing them to Breast Cancer Cares publications and Helpline.
4. Screening services should ensure that women are told at their last routine breast
screening appointment that they can continue to be screened by self-referring and given
an aide-memoire, such as the card produced by the NHS Breast Screening Programme.
This ongoing entitlement to request screening should be reiterated by GPs and practice
nurses at subsequent consultations.
-
8/10/2019 Breast Cancer 12
11/408
Breast Cancer Cares breast
health promotion work
by Laura Wilson, Breast Health Promotion
Training and Support Ofcer,
Breast Cancer Care
The Breast Health Promotion(BHP) team at Breast Cancer
Care offers a specialist
UK-wide service providing a
range of activities to improve
the early detection of breast
cancer. Our breast health
promotion staff and trained
volunteers deliver breast awareness workshops
and presentations in community settings that
provide information about how to be breast aware,
signs and symptoms of breast cancer and breast
screening.
The BHP team also deliver a Train the Trainer:
breast health promotion course designed for
those working in the voluntary, community or
health sectors who would like to learn more about
breast awareness. The aim of this training is to
equip delegates with the knowledge and resources
to cascade the breast awareness message within
their own communities and workplaces.
Our work is aimed at groups of women at higher
risk of breast cancer, and those with poorer
breast cancer awareness, higher risk of delayed
presentation and lower uptake of screening. We
target women aged 45-70 to encourage breast
awareness and to enable informed decisions
about screening; and women over 70 to educate
about increased risk associated with age and the
importance of continued breast screening andbreast awareness.
The team delivers breast awareness workshops
to older women in a variety of settings including
day centres, care homes and at older peoples
events. However, one barrier facing the BHP team
is that older women can often be unwilling to
discuss breast awareness or breast cancer. This
can be because they have other health issues they
feel are more pressing or because they have lostmembers of their peer group to other age-related
illnesses and are reluctant to talk about issues
related to their mortality.
The BHP team will continue to work with older
women to deliver the breast awareness message
and educate this client group about the screening
programme. We encourage women to look after
their breasts and their health regardless of age.
Delay in presentation in olderwomen with breast cancer: how
can we tackle it?
by Dr Lindsay Forbes, Clinical Senior Lecturer
in Health Services Research, and
Professor Amanda Ramirez, Director, Kings
College London, Promoting Early Presentation
Group
Older women are more likely than younger women
to report that they lack condence checking
their breasts. In a recent survey, 72% of womenaged 65+ reported that worry about wasting the
doctors time might put them off going to see
a doctor with a symptom that might be serious
compared with 24% of women aged 30-44.
Older women were also more likely to report that
embarrassment, fear and worry about what the
doctor might nd might stop them going to the
doctor with a symptom that might be serious
(Forbes et al, 2010).
The Kings College London, Promoting Early
Presentation Group, led by Professor Amanda
Ramirez, has developed and evaluated an
intervention to promote early presentation of
breast cancer in older women (the Promoting
Early Presentation (PEP) Intervention) (Burgess et
al, 2008). The PEP Intervention is an interaction
between a radiographer and an older woman,
supported by a booklet. It is delivered in a few
minutes, and addresses the risk factors for
delayed presentation, providing older women with
the knowledge, motivation, condence and skills
to present promptly to their GP on discovering a
breast symptom.
-
8/10/2019 Breast Cancer 12
12/409
A randomised controlled trial found that the PEP
Intervention delivered by radiographers at the last
mammogram women are invited to on the NHS
Breast Screening Programme improved breast
cancer awareness four-fold compared with usual
care after two years (Forbes et al, 2011), an effect
size much greater than any other intervention of
its kind (Austoker et al, 2009).
The PEP Intervention is now being implemented
as a pilot in four services in the NHS Breast
Screening Programme, with the prospect of
national roll-out at the nal round of screening.
The PEP Intervention is also being delivered by
by practice nurses in primary care to promote
early presentation by women who do not attend
screening.
Promoting attendance for breast
screening activities within the
community
by Elaine Murray, Community Liaison Ofcer,
West of Scotland Breast Screening Service
My primary role is to increase the uptake of the
Screening Programme by encouraging women toaccept their invitation for Greater Glasgow and
Clyde areas. I reach out to women aged between
50 and 70 to let them know about routine breast
screening. I also make women aged 71 and over
aware that they can still self-refer for breast
screening.
A visit to the GP practice takes place around 10
weeks before inviting their eligible women for
screening. Posters and leaets are left with the
practice for display in the waiting areas, before and
during screening. Special requirements for women
in the practice are requested at the meeting so
that the Screening Service is able to tailor the
womans appointment. This may include an area
or practice with a high Asian population for which
block booking is an option. Interpreting services
would be contacted to arrange for an interpreter
to be present on the womans arrival. This can
alleviate the pressure of the woman feeling alone
in unfamiliar surroundings.
Two to three weeks before screening commences,
breast screening information displays are set up
within the health centre to which we are inviting
the women. This serves as a source of information
for partners, daughters and family members so
they can pass the information on to someone
who may not often attend the GP practice.
Regular information displays are also set up inshopping centres, leisure centres, bingo halls
and supermarkets which are great locations for
reaching older women.
A pack containing posters, brochures and a
covering letter to explain we are about to invite
women in the area for breast screening is sent
out to local organisations and companies; once
again two to three weeks before inviting women
for screening. An article is submitted to the local
newspaper, raising awareness of the screeningmobile unit moving into the area and its location.
I look into what activities are available to women
in the community, for example community
halls, womens groups, bowling clubs, diet and
tness classes, and how they could be targeted
with screening information. Breast screening
information talks are given to staff and residents
within care homes in the area.
Over the years, breast screening talks have beengiven to women attending classes within the
central mosque. A talk and the showing of a DVD
(in Urdu), has been shown to older Asian women
attending classes. Information leaets in Urdu
are downloaded and printed off in large print
and handed out to the women. I suggest to the
women that if a friend has been invited but on a
different date, they can change the appointment
and come together and support each other. In
July this year I attended an International Healthand Wellbeing event for the Asian population at
the central mosque. I also attended a similar event
that evening which was organised by a group who
broadcast a local Asian radio programme.
The aim of the breast screening service is to
reach out to all women eligible for screening in all
sections of the community and to make women
feel as relaxed and as comfortable as possible
when attending appointments.
-
8/10/2019 Breast Cancer 12
13/4010
Breast awareness and older
women in Wales
by Dr Bernadette Fuge, Chair of Age Cymru
Age Cymru is the leading
charity working with and
for older people in Wales.Age equality is one of the
underlying aims of Age Cymru
and we look to highlight
examples of ageism and
discrimination to support
our ongoing campaign for age equality.
Once they reach 70, women in Wales are no longer
routinely called for breast cancer screening.
Although women are able to request screening,
this cut off point for automatic invitations at 70
mistakenly suggests that the risk of breast cancer
diminishes with age. Surveys have shown that few
women realise that you are at most risk over the
age of 70, with many believing that the risk is higher
in younger age groups. An ICM survey in 2006 of
over 2,200 women over 50 commissioned by
Breakthrough Breast Cancer found that only 2%
thought that women over 70 were most at risk.
This confusion and low awareness about risk is oneof the biggest barriers to self-referral. Evidence
also suggests that older women are less aware of
symptoms and are likely to be slower in visiting
their GP with suspicious symptoms.
The current policy places the onus on older
women, and with all we know about low awareness
of risk, entitlement to screening and general breast
awareness it comes as no surprise to nd that the
majority of women over 70 simply do not requestscreening. The 2006 ICM survey also found that
90% in the over 70 group had not requested
screening.
Awareness raising campaigns targeting women
over 70 should be initiated to increase general
awareness of breast cancer signs and symptoms
and that risk increases with age.
-
8/10/2019 Breast Cancer 12
14/4011
Section two: treatment and assessment
2.1 Diagnostic testingThere is some evidence that older women are less likely to undergo a full triple assessment in the
diagnostic process for breast cancer (Wyld et al, 2004; Lavelle et al, 2007a). Triple assessment refers
to a clinical examination by a doctor or nurse, imaging (a mammogram and/or ultrasound) and a biopsy
(ne needle or core). This triple approach is recommended for most people (SIGN, 2005; NICE, 2009)
because the combined results increase the accuracy of the diagnosis and enable comprehensive
planning prior to starting any treatment.
2.2 The evidence base for treatmentOlder patients are under-represented in clinical trials evaluating cancer treatments and outcomes
(Kemeny et al, 2003; Townsley et al, 2005; Breast Cancer Care, 2006). Clinical trial data is important in
assessing the benets and risks of different treatment options for older women, in terms of their survival
benet, progression-free survival benets, side-effects prole and how they affect quality of life.
Health-related quality of life assessment tools, designed particularly for older cancer patients, may be
helpful during clinical trials in capturing data particularly relevant to older peoples lives (Fitzsimmons et
al, 2009).
Evidence from USA and Canada has shown that possible barriers to older womens participation in
clinical trials include:
intolerance (real or perceived) of toxicity among older patients (Trimble et al, 1994; Townsley et
al, 2006)
increased likelihood of co-morbid conditions among older people (Trimble et al, 1994)
fewer clinical trials available specically for older patients (Trimble et al, 1994)
a lack of practical and social support available to older trial participants, including assistance
with transport (Trimble et al, 1994; Gross et al, 2005)
assumptions made by healthcare professionals (Hutchins et al, 1999; Kornblith et al, 2002;Kemeny et al, 2003), patients or their families (Hutchins et al, 1999) about older people not
being able to tolerate a clinical trial well or not being of benet to the trial.
However, an American study found no signicant difference between younger and older patients in
terms of trial participation once places had been offered, suggesting older people are as motivated as
their younger counterparts to take part in clinical trials given the opportunity (Kemeny et al, 2003).
Two breast cancer clinical trials specically for older patients were established in the UK: the ESTEeM
trial (Endocrine Surgical Therapy for Elderly women with Mammary cancer) and the ACTION trial
(Adjuvant Cytotoxic Chemotherapy in Older Women, BIG 2 05). However, both trials had to close dueto patient recruitment problems (Reed et al, 2009; Cheung et al, 2010).
In the absence of clinical trial data specic to the treatment of older breast cancer patients, older
patients should not be treated differently from younger patients. Older patients should be treated
in accordance with NICE (National Institute for Health and Clinical Excellence) or SIGN (Scottish
Intercollegiate Guidelines Network) guidance, unless other health conditions or patient preference
prevent this. One of the quality statements listed in the NICE Breast cancer quality standard is: People
with early invasive breast cancer, irrespective of age, are offered surgery, radiotherapy and appropriate
systemic therapy, unless signicant comorbidity precludes it. (NICE, 2011)
-
8/10/2019 Breast Cancer 12
15/4012
2.3 The omission of surgeryThere is strong evidence that older women tend to receive non-standard breast cancer management
(Golledge et al, 2000; Wyld et al, 2004; Lavelle et al, 2007 a & b; WMCIU, 2011; Breakthrough Breast
Cancer, 2011) and this may partly account for the lower relative survival rates for older women with
symptomatic breast cancers (WMCIU, 2011). (See also Section one: early diagnosis.)
Older patients are less likely to have surgery for breast cancer (Wyld et al, 2004; Lavelle et al, 2007a &
b; WMCIU, 2011). In 2007, 90% of women aged under 50 diagnosed with symptomatic breast cancerhad surgical treatment recorded, compared to only 74% of women aged 70-79 and only 39% of patients
aged 80 and over (WMCIU, 2011).
The use of primary endocrine therapy (PET) among older women is widespread in the UK (Golledge et
al, 2000; Wyld et al, 2004; Breast Cancer Care, 2006 citing Hind et al, 2006; WMCIU & Breakthrough
Breast Cancer, 2007; Lavelle et al, 2007a). This is where patients are given hormone (endocrine) therapy
as their only treatment and surgery (standard treatment for breast cancer) is omitted. A Cochrane
systematic review concluded that PET should only be offered to older women with oestrogen receptor
(ER) positive tumours (those tumours that will respond to endocrine or hormone therapy) who are unt
for, or who refuse surgery. Long-term data showed that more older women treated by tamoxifen alone (a
form of endocrine/hormone therapy) will suffer from a progression of their breast cancer compared to
those who also had breast surgery. When PET no longer controls the progression of their breast cancer,
these women often have to consider additional treatment, including the option of surgery, but at an
even older age (Hind et al, 2006).
2.4 Radiotherapy and chemotherapy as adjuvant treatmentsThe All Breast Cancer Report (NHSBSP, 2009) presented analysis of chemotherapy and radiotherapy
as adjuvant treatments in different age groups. Older patients were less likely to have radiotherapy
recorded as an adjuvant treatment than women in younger age groups: 53% of patients with surgically
treated breast cancer aged over 70 had radiotherapy recorded (compared to 69% of patients in the
50-70 age group and 70% of patients aged less than 50).
The All Breast Cancer Report also shows how chemotherapy treatment varies by age. Only 16% of
patients over 70 years with surgically treated breast cancer had chemotherapy recorded, compared to
38% of patients aged 50-70 and 72% of patients under 50. The All Breast Cancer Report notes that the
age-related differences in chemotherapy use can be partly explained by the higher proportion of grade
3 and/or node-positive cancers in younger patients. (NHSBSP, 2009).
2.5 Explaining age-related differences in breast cancer managementDifferences in breast cancer management of older women could be explained by a number of factors
including:
lack of clinical trial evidence specic to treatment efcacy in older women (Bayer & Tadd, 2000,
Wyld et al, 2004; Breast Cancer Care, 2006 citing Bugeya et al, 1997, Aapro et al, 2005, Hind et
al, 2006)
patient preference not to undergo surgery (Wyld et al, 2004) (However, this article notes that it
is unclear to what extent this was a truly informed choice.)
severe co-morbidities that contraindicate surgery, chemotherapy or radiotherapy (Wyld et al,
2004)
ageist presumptions by healthcare professionals (discrimination or prejudice on the basis of
age) about how older people will cope with treatment (Lavelle et al, 2007a & b).
-
8/10/2019 Breast Cancer 12
16/40
-
8/10/2019 Breast Cancer 12
17/4014
nutritional status
psycho-social needs (for example, mental health issues, help needed with daily living activities)
presence of geriatric syndromes (a group of health problems more common in older age, such
as vision, hearing problems and dementia).
More high-quality evidence is needed on how comprehensive geriatric assessment might work best in
a breast clinic. It is likely that in busy breast clinics it is not feasible to conduct a full CGA on every older
patient, but a shorter screening tool (such as the Vulnerable Elders Survey (VES-13) or the GroningenFrailty Indicator) might be used to determine which patients would benet from a full CGA (Kristjansson,
2011). More evidence is also needed on how a geriatrician might usefully inform MDT meetings that are
discussing older patients.
Macmillan Cancer Support is currently working in partnership with the Department of Health in England
and Age UK to pilot new models of care for cancer patients aged 70 and over. These include using
geriatric clinical assessment methods with a view to improving treatment for older patients. The results
from this pilot should help to guide best practice in treatment decisions for older women with breast
cancer (Macmillan Cancer Support, 2011).
Initially, there was no discussion. I was informed that what we did was
the gold standard. I had to push for other options and was discouraged
from exploring the treatment I wanted. My other medical conditions
were glossed over (ischaemic heart disease, asthma, high blood
pressure, osteoporosis). Also my emotional fragility having just learnt
that my husband had throat cancer that was immediately
life threatening.
Grace, 68 (62 at diagnosis)
I am a diabetic; I did not nd that the ward took that into consideration.
I was told not to eat from the Sunday evening. The operation did not
take place until the following day at 4.30pm. I was the last person to go
down for the operation. However, because I hadnt had food, I went into
a hypo and was put on a drip.
Shirley, 81 (79 at diagnosis)
-
8/10/2019 Breast Cancer 12
18/4015
Treatment and assessment
Key points evidence base for treatment The standards for the treatment of older people are largely based on clinical trial data
drawn from younger patients. It is not known if the gold standard for treating older and
younger people is the same.
Older patients are under-represented in cancer clinical trials and two recent breast
cancer clinical trials specically for older people had to close due to patient
recruitment difculties.
Breast Cancer Cares recommendations 1. Breast cancer clinical trial designs should not include an upper age limit for eligibility
unless there is a good reason why this is necessary and all trials, where possible, should
stratify their results by age groups.
2. Those designing breast cancer clinical trials should consider what information and
practical support (such as help with transport to appointments) they could offer toencourage older patients to participate.
Key points age-related differences in treatments There is strong evidence that older women tend to receive non-standard breast cancer
management, which may partly account for the lower relative survival rates among older
women with symptomatic breast cancers. (See also Section one: early diagnosis.)
Women undergoing mastectomy only (not having an immediate or delayed breast
reconstruction) tend to be older and in poorer health.
Greater cooperation between healthcare professionals in elderly care and oncology
medical teams could improve the standard of treatment for older patients.
Breast Cancer Cares recommendations 1. Chronological age alone should not be the basis for any breast cancer treatment decision
(including decisions around breast reconstruction).
2. Every older woman with breast cancer should be treated as an individual, not
stereotyped as an older woman, and be given a personalised care plan guided by NICE
(National Institute for Health and Clinical Excellence) or SIGN (Scottish Intercollegiate
Guidelines Network) clinical guidelines. This personalised care plan should take into
account any other medical conditions or co-morbidities (psychological/mental orphysical), psycho-social support and information needs, informed personal preferences,
including body image-related concerns.
3. It is important that healthcare professionals enable older patients to be involved in
treatment decisions to the level that each patient wishes by asking for the patients views
and providing or signposting to information about treatment options. (See also Section
three: information and support.)
4. Breast multi-disciplinary teams (MDTs) should consider using comprehensive geriatric
assessment (CGA) tools in the treatment decision-making process for older women.
5. Breast MDTs should consider including a geriatrician in their discussions about
older patients.
-
8/10/2019 Breast Cancer 12
19/4016
Breast cancer management
in older women
By Professor Malcolm Reed,
Professor of Surgical Oncology and Head of
the Department of Oncology at the University
of Shefeld and Shefeld Teaching
Hospitals Trust
Although a third of women diagnosed with
breast cancer are over the age of 70, they have
traditionally been under-represented in the
majority of clinical trials that have established the
evidence base for optimal breast cancer care.
Recent evidence from large national audits such
as the All Breast Cancer Report produced by the
National Cancer Intelligence Network continues
to demonstrate that a large proportion of olderpatients are not managed in accordance with
evidence-based guidelines. Up to 40% of these
patients do not undergo surgery, being treated
instead with hormone-blocking treatments. For
those that do undergo surgery they are often
incompletely treated, for instance with a failure
to sample or remove axillary lymph nodes, which
provide important information for treatment
and prognosis. Evidence from our own research
indicates that while the omission of surgery may
be reasonable for frail patients, many patients
managed by hormone treatment alone will suffer
an increased rate of local disease progression and
possibly reduced prospects for survival.
Similarly there is very little data available on
how best to manage older women in terms of
chemotherapy following surgery. Large studies
indicate that there is a benet from chemotherapy
in women up to the age of 70 but that the benets
may be reduced in older patients. There areinsufcient data for us to be certain about the
benets of chemotherapy in older women and
this has led to widespread variation in the use of
this treatment as an adjunct to surgery in different
areas of the country. Similarly the rates of offer
and uptake of breast reconstruction following
mastectomy are dramatically reduced in older
women as demonstrated by the recent National
Mastectomy and Reconstruction Audit.
A number of large randomised controlled trials
have attempted to generate evidence for the
management of older women with breast cancer,
but unfortunately some of these have closed early
due to problems with recruitment. The reasons
for this are complicated but it is clear that a much
greater effort and investment is required in order
to address this problem. Breast Cancer Caresfocus on this under-represented area is very
welcome and I fully support this initiative.
Attitudes to older women with
breast cancer - challenges to
improving care through research
By Professor Robert Leonard,
Imperial College London
Age is one of the principal risk factors for breast
cancer, with breast cancer incidence increasing
with age to over 300 per 100,000 in women
aged over 70. Projected population forecasts in
Western countries indicate that the proportion
of older women will increase dramatically over
the next 50 years, which will inevitably lead to
a signicant increase in the numbers of older
women diagnosed with breast cancer.
The best management for older patients with
high risk disease characteristics who do not
have hormone responsive cancer remains
uncertain. Virtually all older patients with hormone
responsive disease are given adjuvant endocrine
therapy, usually tamoxifen, although there are
variations in surgical care and radiotherapy
depending on age and co-morbidities. Clinical
trials evaluating adjuvant chemotherapy in this age
group are sparse. A study of patients enrolled in
164 Southwest Oncology Group trials in the USA
found that patients aged 65 and over were
under-represented in trials. This was especially
apparent in breast cancer trials where only 9% of
patients enrolled in breast cancer trials were 65 or
older, despite 49% of breast cancer patients being
in that age group.
-
8/10/2019 Breast Cancer 12
20/4017
The lack of reliable trial data has led to a great
disparity in the attitudes of clinicians towards
cytotoxic chemotherapy treatment for patients
aged over 70 with early breast cancer. The median
age for breast cancer is around 65 years. It is now
accepted that endocrine therapy is indicated for
virtually all patients with ER/PR positive disease,
regardless of age whereas it is not indicated for ER/PR negative disease. However, there are no agreed
protocols for selecting patients for cytotoxic
agents. Many oncologists use the lack of data
from the overview analyses as evidence of a poor
effect of chemotherapy, whereas the reality is
that for the over 70s there are so few data that no
conclusions can be drawn.
Unfortunately, a combination of scepticism
and protectionism pervade the attitude of too
many health professionals involved in the careof older women with breast and other cancers.
One inevitable result of this has been that too
few older women have been included in clinical
trials of active treatment. This particularly applies
to studies of curative surgery and adjuvant
chemotherapy. Thus we lack the appropriate
body of evidence to substantiate the use of such
potentially curative interventions as a part of
routine care of a disease that is diagnosed in as
many as 15,000 cases every year in women over70 years of age. The prevalence of the condition in
this age group probably exceeds 100,000.
It is clearly already a signicant and growing
healthcare problem for this country and
throughout the Western world. The increasing
incidence of breast cancer in the developing world
means that inevitably, addressing the problem of
its management in older women will not be long
conned to the countries of Western Europe andNorth America.
Health-related quality of life
assessments for older women
diagnosed with breast cancerBy Dr Deb Fitzsimmons, Reader,
Swansea University
There is growing recognition that as part of thetreatment decisionmaking process, ageing
should be considered alongside a diagnosis of
breast cancer in older women (Taylor & Muss,
2010). For example, co-morbidities and frailty have
been acknowledged in the literature as important
determinants of the outcome of treatment
(Beadle et al, 2011). Therefore, the effectiveness
of treatment needs to be measured in other ways
to complement traditional end-points such as
survival rates; with health-related quality of life(HRQOL) seen as a vital endpoint for older women
with breast cancer (Ballinger et al, 2009).
Older women with breast cancer are a
heterogeneous population resulting in different
symptoms, treatment effects and impact on
physical, emotional and social wellbeing. This can
result in varied and complex experiences for older
women living with cancer, with inconsistencies in
the literature in reporting HRQOL outcomes. For
example, increasing age has been shown to be
associated with a decrease in QOL and diminishing
QOL expectations (Hjermstad et al, 1998). Other
studies have identied that older women have
little difference in or indeed better HRQOL than
younger counterparts (Walton et al, 2011).
As part of an international programme of work,
led by Mr CD Johnson, Southampton University,
to investigate HRQOL in older people with
cancer, a systematic review was undertaken toassess the use of HRQOL in older cancer patient
populations and assess whether current HRQOL
measures have considered the specic needs and
concerns of older people in their development
(Fitzsimmons et al 2009). We found that HRQOL
measures often ignore the specic needs and
concerns for older people, including breast cancer,
particularly in people aged 80 years and over. Our
review highlighted the need for a HRQOL measure
specically designed to capture the issues andconcerns most relevant to older cancer patients.
We have developed the European Organisation
for Research and Treatment of Cancer (EORTC)
QOL questionnaire module to assess the HRQOL
-
8/10/2019 Breast Cancer 12
21/4018
issues of concern for older people with cancer, to
supplement the EORTC generic cancer HRQOL
measure (Johnson, C. et al, 2010). Older women
with breast cancer were included in the study
which has revealed specic issues of relevance
and importance to older people aged 70 years
and above, in comparison with people with cancer
aged 50-69 years.
Clinicians and policy makers should consider
different perceptions of HRQOL at different age
points for older women with breast cancer; with
the potential of our older people with cancer QOL
questionnaire module to be used as part of an
assessment system to collect valid, reliable and
clinically important information on the impact
of breast cancer and its treatment on HRQOL in
older women.
Comprehensive
geriatric assessment
By Mr Kwok-Leung Cheung, Clinical Associate
Professor, Division of Breast Surgery, University
of Nottingham
While surgery appears to be the standardtreatment for older women with early primary
breast cancer, a signicant number of patients
(around 40% based on a UK
national audit; Monypenny,
2003) and our own data (Syed
et al, 2011) receive
non-operative treatments (eg
anti-hormone treatment in
the form of medications) as
their initial treatment, due toco-existing medical illnesses, frailties, quality of
life, patient choice and other psycho-social factors
relevant to this population.
The difculty lies in how best to identify patients
who might benet from different treatment
approaches. The gold standard of collecting
high-level evidence using randomised controlled
trials does not seem to work well in this context.
At least a couple of important UK-based trials ofthis kind have failed to recruit and the reasons are
complex, and could be related to pre-conception
of patients, healthcare providers and even
researchers! We may have to rely on large-scale,
non-randomised observational studies to collect
data which can then be analysed using appropriate
statistical input.
Current clinical practice does not provide an
objective assessment of the whole person in
the decision-making process. Comprehensive
geriatric assessment (CGA) has been developedwith the assumption that age alone is not a good
indicator of frailty and ability to withstand the
rigors of treatment. The domains of assessment
include function, co-morbidity, cognition,
psychological state, socio-economic issues,
polypharmacy and nutrition. Early results of our
work show a link between some CGA factors
and treatment patterns, for example, signicant
associations seen between the use of
anti-hormone treatment (as opposed to surgery)
and increasing age, greater co-morbidity and moredaily medications (Parks et al, 2011). We hope
to develop a CGA tool specic to the context of
primary breast cancer, and then to validate and
apply it in clinical practice. Alongside biological
information (eg hormone sensitivity) about the
cancer, this tool has the potential to guide decision
making between patients and clinicians in order
to provide a holistic assessment resulting in a
personalised management care plan at diagnosis.
-
8/10/2019 Breast Cancer 12
22/4019
Section three: information and support
3.1 Sources of information and support
The real support I have had is through the breast cancer support group I
joined after my treatment nished. Meeting with friends who have gone
through breast cancer and explaining to them what each of us has gone
through: a trouble shared is a trouble halved.
Shirley, 81 (79 at diagnosis)
There is little evidence available on the breast cancer information and support needs of older women
and their preferred sources of information and support. Breast Cancer Care and Kings College Londons
Better Access, Better Services (BABS) study plays a part in addressing this evidence gap. Part of this
small exploratory study investigated the breast cancer experiences of older women through a focus
group and semi-structured telephone interviews with women over 65. Older women in the BABS study
had little awareness of Breast Cancer Care. If they had known about Breast Cancer Care, the majoritystated they would have preferred to use Breast Cancer Cares face-to-face services, as opposed
to online or telephone-based services. However the One-to-One Support service (a peer support,
telephone-based service) was also perceived as useful (Blows et al, 2009a). The EPaN4study, funded
by Macmillan Cancer Support and conducted by Southampton University, also found that contact with
other women affected by breast cancer was highly regarded by older women. However, they may have
practical difculties in getting to face-to-face services, such as breast cancer support groups. The EPaN
study also found that the internet was not regarded as a key source of information for older women
(most of the older women in the study had no access to a computer) (Addington-Hall et al, 2010).
The BABS study found that older women tended not to seek information in addition to that given bytheir healthcare professionals (Blows et al, 2009a). This corroborates the ndings from other studies
suggesting that older women value and trust information given by hospital specialists to the extent
that they do not attempt to access alternative sources of information and support (Silliman et al, 1998;
Addington-Hall et al, 2010). Older women also tend to rely heavily on the information and opinions given
to them by their healthcare professionals in treatment decision-making (Husain et al, 2008). However,
more research is needed into different minority groups within the population of older women and their
attitudes towards healthcare professionals as sources of information and support. For example, Breast
Cancer Cares policy briengLesbian and bisexual women and breast cancerhighlights particular
communication barriers between lesbian and bisexual women and healthcare professionals (Breast
Cancer Care, 2011b).
Many of the older women affected by breast cancer are also living with other health conditions (Girre
et al, 2008), and they may nd that information and support services do not take this extra burden into
account and presume that breast cancer is their only major health concern (Addington-Hall et al, 2010).
4Experiences, Preferences and Needs of women aged 70 years and over
-
8/10/2019 Breast Cancer 12
23/4020
Ive had great support, friends who stayed with me here and others
who drove me to appointments and treatments or sat with me through
chemo My family have been wonderful. Staying with me and talking
with me and my cancer nurse also always there to talk to. Its so
important when you are on your own to be able to talk about how
you feel.
Edna, 80 (75 at diagnosis)
3.2 Patient experiences with healthcare professionals
Have time to listen especially if the patient is frightened and living on
their own. Depending on circumstances every person and each case
is different.
Judy, 78 (67 at diagnosis)
It is concerning that while healthcare professionals are the key source of information and support
for older women, many of those participating in the BABS study had actually experienced poor
communication from their healthcare professionals and had felt excluded from decision-making around
treatment and care options (Blows et al, 2009a). (See also point 2.7 Assessment of treatment options.)
The Cancer Patient Experience Survey 2010 found that cancer patients in the youngest and oldest age
groups (aged 16-25 and aged 76 and over) often reported less positive views about their treatment than
cancer patients in the middle age groups.
Fewer of the oldest cancer patients (aged over 76) were given the name of a clinical nurse specialist. Inall age groups the percentage of those given access to a named clinical nurse specialist was between
80% and 90%, except for those aged 76 and over where it was between 70% and 80% (DH, 2010). Lack
of access to a named clinical nurse specialist is likely to impact negatively on the co-ordination of a
patients care and a patients access to information and support.
I felt like a non-person as if I was a piece of meat on a conveyor belt
with no voice and no right to information.
Grace, 68 (62 at diagnosis)
-
8/10/2019 Breast Cancer 12
24/4021
3.3 Independence after breast cancer diagnosis
Before my cancer at 75, I was active, full of life and tended to my large
house and garden by myself (I am a widow and live alone). Since then I
have a cleaner every two weeks and a gardener, as I intend to stay here
as long as I can.
Edna, 80 (75 at diagnosis)
Getting back to normal life and maintaining their independence as much as possible are important
treatment outcomes for older women with breast cancer (Husain et al, 2008; Blows et al, 2009a).
Age UK has highlighted the issue of social isolation among older people in the publication Loneliness
and isolation evidence review(Age UK, 2011). Older women who are living alone with little social support
available to them from friends and family are likely to nd maintaining their independence and coping
with the side effects of breast cancer treatments and the emotional impact of diagnosis particularly
difcult. However, there appears to be no specic research published on this issue in relation to breast
cancer treatment.
Older women who are living with a partner might also feel isolated from care and support. The person
they are living with is likely to be older too and less able to provide care and support for the woman
affected by breast cancer because of the effects of ageing or other health conditions more common in
older age (Cachia et al, 2011).
Many older women are carers (Age UK, 2010) (for example, for grandchildren or for sick or disabled
partners or relatives) and breast cancer treatments and their side-effects may affect their ability
to carry out their caring responsibilities. Some older women may refuse breast cancer treatments
because of these responsibilities. One of the aims of the older people project currently being piloted byMacmillan Cancer Support in partnership with the Department of Health in England and Age UK is to
co-ordinate practical support in order to reduce the number of older people who refuse cancer
treatment because they are concerned about maintaining their independence and coping at home
(Macmillan Cancer Support, 2011).
Ive had lots of help from friends walking the dog, shopping, driving me
around when I felt too weak to cope.
Mary, 67 (diagnosed this year)
3.4 Identifying and addressing support and information needs
I was told that there were young women [with breast cancer] with young
children andtheywere coping so I should.
Grace, 68 (62 at diagnosis)
As a heterogeneous group, older women have varied information and support needs around emotional,
body image-related, practical and nancial issues. It should never be presumed that some issues are not
relevant to an older age group. It is important that women of all ages diagnosed with breast cancer havetheir individual needs identied and addressed through a holistic needs assessment before and during
-
8/10/2019 Breast Cancer 12
25/40
-
8/10/2019 Breast Cancer 12
26/4023
Information and support
Key points Older women value and trust information from healthcare professionals and tend not to
seek additional information to that given in a healthcare setting.
Older women value face-to-face services and being in touch with others who haveexperienced breast cancer.
The internet is not a key source of information for older women.
Older women may have particular ongoing support needs around lymphoedema and
around prosthesis and bra ttings. Light-weight prostheses and front-fastening bras that
t prostheses are important for older women with shoulder or arm mobility problems and
for more frail older women.
Breast Cancer Cares recommendations
1. Voluntary sector organisations should consider using healthcare professionals to deliverface-to-face breast cancer information services, as healthcare professionals are a
trusted source of information for older women.
2. Online-only breast cancer information and support should be avoided as many older
people do not have access to the internet.
3. Any imagery used in breast cancer information publications should include images of
older women of different social and cultural groups.
4. The design of breast cancer information and support services should involve
consultation with older women and reect the needs of different social and cultural
groups of older women.5. Healthcare professionals should identify and address the individual psycho-social
needs of older women before and during treatment and signpost to relevant sources of
information and support, including nancial and benets information, breast prosthesis
services and lymphoedema services. Where possible, ongoing needs should also be
assessed during follow-up consultations.
-
8/10/2019 Breast Cancer 12
27/40
Better Access, Better Servicesby Karen Scanlon, Head of Research and
Evaluation, Breast Cancer Care
From 2006-8 Emma Ream,
Professor of Supportive
Cancer Care, Florence
Nightingale School of Nursingand Midwifery, Kings College
London was awarded a
two year Knowledge Transfer
Partnership Grant to work
on a collaborative research study with Breast
Cancer Care, called the Better Access, Better
Services project (BABS). The study aimed to
explore potential barriers to people accessing
NHS services and the services provided by
Breast Cancer Care, especially among groupssuch as older people, people from black and
minority ethnic groups and people from socially
disadvantaged backgrounds. It also aimed to
provide recommendations to Breast Cancer
Care, other voluntary sector organisations, and
healthcare professionals providing care and
support to these diverse groups. A series of
reports were produced as a result of the study.
One of the key pieces of research undertakenwas a qualitative investigation of the suitability
and accessibility of information and support
provided by the statutory and voluntary sectors
to older women (65+) affected by breast cancer.
A convenience sample of 12 older women (65)
diagnosed with breast cancer participated in
either a one-to-one interview or focus group.
Participants comprised four women diagnosed for
the rst time, or with a recurrence in the past ve
years, and eight long-term survivors (ve years or
more post-diagnosis at time of interview).
Hospital specialists and breast care nurses were
the preferred source of information and support
for participants, regardless of age at diagnosis or
time since diagnosis.
The ndings also showed that less than half
the participants had accessed information or
support from voluntary organisations. Factors
that appeared to inuence their uptake includedtheir desire to get on with their lives. Breast
cancer affects older women at a point in their
lives when they have other health concerns and
responsibilities. This may mean that they do not
have the time or inclination to access voluntary
services. In addition, most participants were not
informed about voluntary organisations. This
nding supports evidence from Mehnert and Koch
(2008) that 46% of older women felt insufciently
informed about available support services. It
is evident that there is not a clear pathway for
patients to nd out about voluntary supportservices. However, there is potential, with better
assessment of need, for healthcare professionals
to direct older women to appropriate services.
Voluntary organisations also need to play their
part, developing services appropriate for older
women and marketing them successfully.
Supporting older people in
Shefeld breast awarenessand breast cancer supportBy Debbie Price, Age UK Shefeld
While working with older people I have found that
they are often unaware that they are at higher
risk of breast cancer and often state that breast
cancer is simply not relevant to them. Their
rationale for this assumption is varied. They often
state that they cannot be at risk because theyno longer have to attend screening. Past advice
about what to check for (lump hunting) has also
led to people being completely unaware of other
symptoms and how to check for them.
Older people have also told me that they do not
feel comfortable talking to their GP or they simply
do not want to waste their time. They have also
said that they do not feel able to raise concerns
when they disagree with what their GP has said.
This ingrained behaviour is perhaps one of thebiggest barriers that requires overcoming as it can
obviously result in a later diagnosis.
So how can we overcome these barriers? One
solution is to look to existing healthcare staff such
as practice nurses, whom older patients may view
as more approachable, to promote this message.
Indeed practice nurses may be best placed within
a practice to incorporate breast cancer awareness
into their routine check-ups. However, carefulconsideration would still need to be given to the
best person to raise awareness among BAME
patients within the practice.
24
-
8/10/2019 Breast Cancer 12
28/40
We also need to consider alternative ways to
deliver this message to those who do not access
their local surgery. One possible solution is to
encourage partnership working with community
organisations as they are ideally placed to help
deliver this message. Age UK Shefelds Macmillan
Cancer Support workers have already undergone
breast cancer awareness training and use this newknowledge to deliver the message while working
with individuals and groups within the community.
We have found that older people feel more at ease
in an informal setting and able to participate in the
discussions and ask questions at these sessions.
This informal approach also seems to work for
people who lack condence because they know
that their peers are likely to raise the questions
they cannot. However, we must also give people
the opportunity to speak to us on an individual
basis. By linking up with community organisationsand outreach workers we could actively spread the
message into seldom heard from communities.
Our service users have also told us that while there
is a plethora of leaets available they often felt
overwhelmed by information and still prefer to talk
to a person about any specic concerns they may
have. Our service users seem to prefer the brief
easy to read guides, especially those that include
helpline numbers, and in particular the little walletsize information booklets. It may also be benecial
to have information in a variety of community
languages.
25
-
8/10/2019 Breast Cancer 12
29/4026
Next steps
Breast Cancer Care has developed Vision 2020 to guide the charitys activities over the next few years,
and a focus on tackling inequality underpins the vision. Within our work on understanding and tackling
health inequalities, we have designated improving our reach to older women and inuencing the health
services provided for older women as areas for priority action.
For more information on this policy brieng, or on our inequalities work in general, please contact Lizzie
Magnusson, on 0845 092 0800or [email protected]
Breast Cancer Care, November 2011
-
8/10/2019 Breast Cancer 12
30/4027
Annexe one: biographies of contributors
Mr Kwok-Leung Cheung, Clinical Associate Professor, University of Nottingham and Honorary
Consultant Breast Surgeon, Royal Derby HospitalDuring his time at Nottingham University Hospitals,
Mr Cheung developed the dedicated primary breast cancer clinic for older women into a combined
surgical/oncology facility. He leads a research programme looking at different aspects of primary
breast cancer in older women (biology and clinical outcome, comprehensive geriatric assessment and
quality of life, and clinical and cost effectiveness). His collaborators include experts at the University of
Nottingham (Molecular Medical Sciences, Biomedical Sciences, Nursing, and Pharmacy) and also in the
US (University of Texas MD Anderson Cancer Center and City of Hope Comprehensive Cancer Center,
California).
Dr Deb Fitzsimmons, Reader, Swansea UniversityDeb Fitzsimmons has a clinical background in
cancer and surgical nursing and is an experienced health services researcher with expertise in the
development, use and interpretation of patient-reported outcome measures and health economic
evaluation. Deb has a track record of funding with over 1.8m as principal investigator or co-applicant
and is involved with several funded research projects. Current work includes a range of national andinternational collaborations in the eld of quality of life assessment in older people with cancer,
gastro-intenstinal cancers and the development of symptom-based questionnaires. She is a long
standing member of the European Organisation for the Research and Treatment of Cancer (EORTC)
Quality of Life Group, a world-recognised group of the use of quality of life measures in cancer trials and
studies.
Dr Lindsay Forbes, Public Health Physician and Clinical Senior Lecturer, KCLPromoting Early
Presentation Group, Kings College LondonLindsay Forbes qualied as a doctor in 1988. After some
years in hospital medicine she trained in public health. Her research interests include interventions
to promote cancer awareness and early presentation; international and ethnic differences in cancerawareness and beliefs; the association between cancer awareness and survival.
Dr Bernadette Fuge, Chair, Age CymruBernadette Fuge retired as Principal Medical Ofcer and
Medical Director in the Welsh Assembly in 2005. In addition to her medical qualication she has post-
graduate degrees in law and public health. She was treated for breast cancer in 2002 following detection
by screening.
Professor Robert Leonard, Professor of Cancer Studies, Imperial College London and Honorary
Consultant Physician at Imperial College HealthcareNHS Trust During his career, Robert Leonard
has published 247 original papers/letters, 110 reviews, reports, chapters and editorials and authored or
co-authored four books. He also chairs Breast Cancer Cares Research Committee.
Elaine Murray, Community Liaison Ofcer, West of Scotland Breast Screening Service Elaine
Murray joined the West of Scotland Breast Screening Service in April 1992. For the past seven years her
role has involved encouraging those who are undecided about attending screening, and offering advice
on how to access the Service. Key to this post is being visible in the community and proving a contact
for the GP practice at the time of screening in the locality.
-
8/10/2019 Breast Cancer 12
31/4028
Debbie Price, Age UK Shefeld/Macmillan Cancer Support Service Debbie Prices role is to provide
non-clinical advice and support to anyone over the age of 50 who has been affected by cancer. A
signicant part of her role is to try and reach those who do not access traditional services by taking their
free, one-stop advice and support service out into the community. Debbie will be linking up with existing
community groups and holding outreach clinics at community venues and will use these opportunities
to promote breast cancer awareness.
Professor Amanda Ramirez, Director, KCL Promoting Early Presentation Group, Kings College
London Amanda Ramirez qualied as doctor in 1982. She went on to train as a psychiatrist and over the
past 21 years has specialised in liaison psychiatry. In 1997 she was appointed as the Professor of Liaison
Psychiatry at Kings College London. She leads the Kings College London Promoting Early Presentation
Group examining psychological and social aspects of cancer. Her research focuses on examining ways
of promoting early diagnosis of cancer. As part of her NHS commitment she is a National Clinical Lead
for Cancer Patient Experience. In particular she leads on the national work to improve the delivery
of patient information. She is a facilitator on the National Advanced Communication Skills Training
Programme.
Professor Malcolm Reed, Professor of Surgical Oncology and Head of the Department of
Oncology at the University of Shefeld and Shefeld Teaching Hospitals TrustFor the past 10years Malcom Reeds group has been focusing on issues relating to the management of breast cancer
in older women and he participates in a number of clinical trials in this area. He is the immediate former
President of the British Association of Surgical Oncology and a member of the Government advisory
board on screening for breast cancer.
Karen Scanlon, Head of Research and Evaluation, Breast Cancer CareKaren Scanlon has worked
at Breast Cancer Care for eight years and is responsible for developing and overseeing a portfolio
of research and service evaluation activities for the organisation. Her research interests include:
cancer health promotion and evaluating interventions to promote breast cancer awareness and early
presentation; breast cancer inequalities and breast cancer survivorship in particular developing andevaluating interventions that seek to address the needs of breast cancer survivors from a range of
different age groups, ethnic and social backgrounds.
Laura Wilson, Breast Health Promotion Training and Support Ofcer, Breast Cancer Care, Wales,
South West and Central England Laura Wilson has worked at Breast Cancer Care since 2004 and has
been central to the development of the Breast Health Promotion service. Her role involves delivering
the Train the Trainer: breast health promotion programme and training and supporting breast health
promotion volunteers. She has a masters degree in Health Education and Health Promotion.
-
8/10/2019 Breast Cancer 12
32/4029
Annexe two: references
Aapro, M., Monfardini, S., Wildiers, H. (2006). Strategies and practice guidelines in geriatric oncology,
FECS NewsletterNo. 8, pp. 4-6
Adams, J., White, M. & Forma, D. (2004). Are there socioeconomic gradients in stage and grade of breast
cancer at diagnosis? Cross sectional analysis of UK cancer registry data, British Medical Journal, 329,
pp.142-143
Addington-Hall, J., Foster, C., Fenlon, D., Payne, S., Seymour, J., Stephens, R., Walsh, B., Coleman, P.,
Simmonds, P., Moffatt, J., Brooks, C. & Frankland, J. (2010). Older womens experience of breast cancer
alongside other health conditions: The EPaN study (Experiences, Preferences and Needs of women
aged 70 years and over),University of Southampton, research funded by Macmillan Cancer Support
(not yet published)
Age UK (2011).Loneliness and isolation evidence review
Age UK (2010).Invisible but invaluable. Campaigning for greater support for older carers
Austoker, J., Bankhead, C., Forbes, L.J., Atkins, L., Martin, F., Robb, K., Wardle, J. & Ramirez, A.J. (2009).
Interventions to promote cancer awareness and early presentation: systematic review, British Journal
of Cancer, 101, s31-s39
Ballinger, R.S. & Falloweld, L.J. (2009). Quality of life and patient-reported outcomes in the older breast
cancer patient, Clinical Oncology (Royal College of Radiology), 21(2), pp. 140-55
Ballinger, R., Ford, E., Pennery, E., Jenkins, V., Ring, A., Falloweld, L. (2011). Specialist breast care andresearch nurses attitudes to adjuvant chemotherapy in older women with breast cancer, European
Journal of Oncology Nursing(Epub ahead of print)
Bayer, A. & Tadd, W. (2000). Unjustied exclusion of elderly people from studies submitted to research
ethics committee for approval: descriptive study, British Medical Journal, 321, pp. 992-993
Beadle, B.M., Woodward, W.A. & Buchholz, T.A. (2011). The impact of age on outcome in early-stage
breast cancer, Seminars in Radiation Oncology, 21, pp. 26-34
Blows, E., de Blas Lop, J., Scanlon, K., Richardson, A. & Ream, E. (2011). Information and support for older
women and breast cancer, Cancer Nursing Practice, 10 (3) pp. 31-37
Blows, E., Scanlon, K., Hateld, J., Richardson, A. & Ream, E. (2009a). The Better Access, Better Services
Project. Suitability and accessibility of information and support services provided by the statutory and
voluntary sectors to older women affected by breast cancer. Breast Cancer Care and Kings College
London
Blows, E., Scanlon, K., Hateld, J., Richardson, A. & Ream, E. (2009b).Accessing information and support
from the NHS and voluntary sector: Experiences of Asian and African Caribbean women with breast
cancer. Breast Cancer Care and Kings College London
Breakthrough Breast Cancer Every Chance?http://breakthrough.org.uk/our_work/our_campaigns/
every_chance.html (Accessed 23/08/11)
Breast Cancer Care (2011a). Breast cancer and inequalities: a review of the evidence. Summary.
-
8/10/2019 Breast Cancer 12
33/4030
Breast Cancer Care (2011b). Lesbian and bisexual women and breast cancer.ESRC knowledge exchange
programme RES-192-22-0111
Breast Cancer Care (updated 2011). Men with breast cancer
Breast Cancer Care (2010). Breast Cancer Risk: what it means to you
Breast Cancer Care (2006). The Age Factor; ageism in the treatment of breast cancer
Breast Cancer Care (2005). Men with breast cancer [Policy briefng]
Breast Cancer Care (2003). 80 over 50 Policy Briefng
Bugeja, G., Kumar, A. & Banerjee A. (1997). Exclusion of elderly people from clinical research: a
descriptive study of published reports,British Medical Journal, 315(7115), p. 1059.
Burgess, C.C., Bish, A.M., Hunter, M.S., Salkovskis, P., Michell, M., Whelehan, Ramirez, A.J. (2008).
Promoting early presentation of breast cancer: development of a psycho-educational intervention,
Chronic Illness, 4(1), pp.13-27
Burgess, C.C., Linsell, L., Kaparia, M., Omara, L., Michell, M., Whelehan, P., Richards, M.A. & Ramirez, A.J.
(2009). Promoting early presentation of breast cancer by older women: A preliminary evaluation of a
one-to-one health professional-delivered intervention, Journal of Psychosomatic Research, 67(5), pp.
377-387
Burgess, C.C., Potts, H.W.W., Bish, A,. Hunter, M.S., Richards, M.A. & Ramirez, A.J. (2006). Why do older
women delay presentation with breast cancer symptoms?, Psycho-Oncology,15, pp.962968
Burgess, C.C., Ramirez, A.J., Richards, M.A. & Love, S.B. (1998). Who and what inuences delayedpresentation in breast cancer?, British Joumal of Cancer, 77(8), pp. 1343-1348
Cachia, E., Broadhurst, R & Ahmedzai, S.M. (2011). Supportive, palliative and end-of-life care for older
breast cancer patients, Management of breast cancer in older women, Reed, M.W.R. & Audisio, R.A.
(eds.), London: Springer-Verlag, pp. 371-403
Cancer Research UK (2011) Breast cancer - UK incidence statistics, http://info.cancerresearchuk.org/
cancerstats/types/breast/incidence/#source36, (Accessed 15/09/11)
Cheung, K.L., Morgan, D.A., Winterbottom, L., Richardson, H., Ellis, I.O. & Porock, D. (2010). A vision tooptimise the management of primary breast cancer in older women. Letter to the Editor, The Breast, 19,
pp. 152-155
Cheung, K.L., Wong, A.W., Parker, H., Li, V.W., Winterbottom, L., Morgan, D.A. & Ellis, I.O. (2008).
Pathological features of primary breast cancer in the elderly based on needle core biopsies A large
series from a single centre, Critical Reviews in Oncology/Hematology, 67, pp. 263-7
Collins, K., Winslow, M., Reed, M.W., Walters, S.J., Robinson, T., Madan, J., Green, T., Cocker, H. & Wyld, L.
(2010). The views of older women towards mammographic screening: a qualitative and quantitative
study, British Journal of Cancer, 102, pp. 1461-1467
Cuthbertson, Goyder and Poole (2009). Inequalities in breast cancer stage at diagnosis in the Trent
region, and implications for the NHS Breast Screening Programme, Journal of Public Health, 31(3),
pp. 398-405
-
8/10/2019 Breast Cancer 12
34/4031
Department of Health (DH) (2011). Improving Outcomes: A Strategy for Cancer
Department of Health (DH) (2010). National Cancer Patient Experience Survey Programme 2010
National Survey Report
Department of Health (DH) (2007). Cancer Reform Strategy
Downing, A., Prakash, K., Gilthorpe, M.S., Stefoski, M.J. & Forman, D. (2007). The effect of socioeconomicbackground on stage at diagnosis, treatment pattern and survival in women with invasive breast cancer,
British Journal of Cancer, 96, pp. 836840
Fitzsimmons, D., Gilbert, J., Howse, F., Young, T., Arrarras, J.I., Brdart, A., Hawker, S., George, S., Aapro,
M., Johnson, C.D. (2009). A systematic review of the use and validation of health-related quality of lif