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Improving outcomes and experiencesfor older women with breast cancerA policy brieng by Breast Cancer Care

personal experienceprofessional support

Supported by Age UK


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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.


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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


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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.


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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.


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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).


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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


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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.


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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.


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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.


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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.


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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.


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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.


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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)


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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).


16/40


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)


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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.


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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.


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


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.


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


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.


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.



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.


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.


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


25/40


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.


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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


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


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


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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.


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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.


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Annexe two: references

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