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A Story Half Told is an initiative by Pfizer highlighting
the
need
to
widen
the
conversation
around
breast
cancer in Ireland to include metastatic disease - shining
a spotlight on the need for awareness, support and care.
METASTATIC
BREAST CANCER
A STORY
HALF
TOLD
“I think that there’s
often a tendency for those
with a metastatic diagnosis to
withdraw from others. They don’t
want to frighten other breast cancer
survivors with their diagnosis and with
the realities of living with an incurable
cancer. It may seem ridiculous, but
there’s also often a real sense of
failure, of having let people down
by not ‘beating’ breast cancer”
Rhona Nally, from Dublin.
“One of the
hardest parts about
living with mBC is trying to
tell people that I am still sick
and I still have terminal cancer .
It gets exhausting so I just pretend
like I am okay… I have spent the
time since my diagnosis searching
for good support and proper
clear information on mBC,
travelling as far as Boston
to get some help.”
Evelyn Wakefield, from Offaly.
“My family and I get strength
from giving support to others,
and by raising awareness for
metastatic breast cancer generally.
It’s important to keep busy and work
towards making a difference. Access
to holistic support services is vital
for all women with breast cancer.”
Olive Dermody, from Galway.
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FOREWORD:
AWARENESS OF EARLY BREAST CANCER IS HIGH, BUT KNOWLEDGE OF
METASTATIC BREAST CANCER IS LOW
The breast cancer advocacy and awareness activities, and an abundance of
education efforts, information and news coverage have made breast cancer
a familiar disease. Thanks to the significant strides made in early detection,
research, treatment and patient empowerment over the past 30 years, there
is much progress to celebrate. Indeed, the prognosis of early-stage breast
cancer has transformed as survival rates have steadily increased in Irelandi.
For metastatic breast cancer (mBC), however, the narrative is markedly different.
With the public breast cancer conversation focused primarily on early
detection and survivorship, metastatic breast cancer patients often feel
misunderstood and isolated from the larger breast cancer communityii.
Metastatic Breast Cancer: A Story Half Told is a global educational initiative
in which Pfizer is aiming to increase understanding about metastatic breast
cancer. This initiative comes at a time when leaders within the breast cancer
community are acknowledging worldwide that progress in mBC has not kept
pace with the evolution witnessed in managing early breast cancer.
As part of A Story Half Told – and for the first time in Ireland – we have undertaken
a female-only, nationally representative survey to gauge awareness of mBC. As
detailed in this report, the research highlights some worrying misconceptions.
Many Irish women know little about metastatic breast cancer, including the
fact that early detection does not help survival for these patientsiii.
A Story Half Told is part of Pfizer’s ongoing commitment to support everyone living
with breast cancer – a commitment that has led to, for example, supporting essential
fundraising activities for the Marie Keating Foundation, as well as supporting services
for patients with mBC through Europa Donna Ireland and the Irish Cancer Society.
Pfizer is committed to ongoing research in cancer and in the area of metastatic
breast cancer where there remains an unmet need for innovative treatments. There
are currently a number of Irish hospitals and clinicians involved in clinical trials in this
area and we are also delighted to support the patient groups in this area to look at
the supports that patients faced with a metastatic breast cancer diagnosis need.
Though the task is challenging, the time to take action is now in order to begin
the next phase of the breast cancer movement, one where all people living
with breast cancer – including those with mBC– feel equally supported. Now
is a time to expand the conversation to include metastatic breast cancer.
Paul Reid,
MD, Pfizer Healthcare Ireland
Michael Riordan,
Head of Oncology, Pfizer Healthcare
Ireland
3
THE CURRENT BREAST
CANCER LANDSCAPE
Patients with metastatic breast cancer (mBC) face unique
challenges as well as a level of isolation and helplessnessii.
cancer, which receive considerable attention and ensure
that breast cancer is a disease familiar to many peopleii.
Despite advances in the treatment of breast cancer,
approximately 30% of women initially diagnosed with
earlier stages of breast cancer eventually develop recurrent
advanced or metastatic diseaseiv. Early detection does not
help survival for mBC patients and average survival is only 2-3
years – although many women can live for much longerv.
In contrast, A Story Half Told reveals that there is a lack of public
knowledge about mBC compared with early breast cancer,
which leads to widespread misperceptions and which can have
a negative impact on the lives of patients and their familiesii.
The recent Global Status of Metastatic Breast Cancer
Decade Report highlights that progress in mBC has
not nearly kept pace with the evolution witnessed
in managing early breast cancer (eBC)ii. In addition,
the report confirms the many misconceptions and
misunderstandings surrounding metastatic breast cancerii.
The general public’s knowledge of breast cancer issues often
comes from survivor stories by patients with early breast
Substantial resources have been directed towards
breast cancer - education, research and advocacy
effects, which has resulted in gains that have mainly
benefited those with early breast cancerii.
The goal of this report is to shed light on the challenges
and gaps for patients with mBC and to inspire change
within the breast cancer community and beyond,
including physicians, researchers, policymakers, industry,
advocates, caregivers, patients, and the public.
GENERAL PUBLIC SURVEY OUTLINE:
TESTING IRELAND’S BREAST CANCER IQ V
Breast cancer represents a significant public health burden in Ireland and
across the globeii. Over the last decade, substantial resources directed
toward breast cancer education, research, and advocacy efforts have led to
gains in detection, treatment, and outcomesii. Yet, these efforts have mainly
benefited those with early breast cancer, and as a result, the need for support
and treatment for people living with mBC has been left in the shadowsii.
In order to understand metastatic breast cancer patients’ broader environment,
a nationally representative study was conducted amongst 1,126 Irish women
aged 18+ to examine their perception and understanding of metastatic breast
cancer. No previous studies have examined Irish societal awareness and
comprehension of metastatic disease, making this study the first of its kind.
METHODOLOGY
Gender
Age of respondents
Region
3%
20%
20%
20%
20%
20%
10%
24%
100%
4
18-34
35-44
45-54
55-64
65+
24%
WHAT YOU MAY NOT KNOW ABOUT
BREAST CANCER BUT SHOULD
Metastatic breast cancer is the
most advanced stage of breast cancer,
44%
spread from the
breast to other parts of the body
where the cancer has
44% of Irish women associate
the word ‘uncertainty’ with
(typically the brain, lung, liver and bones)ii
metastatic breast canceriii
95%
Approximately
1 in 3
diagnosed with early breast
cancer will
eventually
95% of Irish women believe
progress to metastatic
that breast cancer can be cured
breast canceriv
if caught & treated earlyiii
2-3
years
Also known as Stage
IV
92%
breast cancer, metastatic
breast cancer is incurable
– the average survival
is 2-3 yearsiv
92% of women believe there have been
significant advances in breast cancer
treatment in the last 10
70%
6 in 10 Irish women think
breast cancer receives a lot
of public attention – but over
half (70%) say metastatic
breast cancer receives
little to no attentioniii
25%
24%
28%
yearsiii
One-quarter (25%) of Irish women
have never heard of metastatic breast
canceriii and a further
quarter
(24%) have heard the term but
don’t know what it means. 28%
are very familiar with the
term advanced breast canceriii
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When it comes to cancer general knowledge, Irish
women said they know the most about breast cancer,
followed by cervical cancer (9%) and skin cancer (9%).
The cancer women know least about is kidney cancer.
2%
Breast cancer
1 (know a lot)
2 (know Something)
3 (Neutral)
4 (know Little)
5 (know Nothing)
18%
37%
Cervical cancer
9%
Skin cancer
9%
Bowel cancer
8%
Prostate cancer
8%
Ovarian cancer (cancer of the ovaries)
7%
21%
37%
Lung cancer
7%
20%
39%
Leukaemia (cancer of the blood and bone marrow)
7%
Non-Hodgkin’s lymphoma (a type of blood cancer)
6%
13%
Uterine cancer (cancer of the uterus/womb)
5%
15%
Pancreatic cancer
5%
12%
Stomach cancer
5%
12%
Kidney cancer
5%
When asked how much public attention mBC receives, women
felt it gets less public attention than general breast cancer.
36%
31%
28%
36%
27%
21%
40%
21%
13%
28%
20%
25%
10%
25%
30%
9%
17%
30%
24%
25%
32%
32%
20%
28%
27%
25%
31%
25%
27%
31%
32%
31%
23%
5%
23%
27%
16%
6%
19%
35%
17%
9%
12%
Almost all Irish women believe that breast cancer can
be cured if the disease is caught and treated early.
34%
Agree
Agree
Disagree
Disagree
Strongly
Somewhat
Somewhat
Strongly
60% 95% 35%
4%
1%
48% 92% 44%
6%
2%
Patients with breast cancer
21%
can be cured if the disease
is caught early and treated
9%
Over the past 10 years,
there have been significant
advances in breast
cancer treatment
No Attention
A Little
Some
A Lot
Most women feel you should perform
a breast self-exam about once a
month but only half of women do.
54%
45%
27%
17%
20%
11%
9%
0%
0%
About once a month
6
17%
Every 2-3 years
Never
54%
54% of Irish women have never had a mammogram.
1/2
Most women feel you should perform a breast self-exam
about once a month but only half of women do.
76%
Almost all women (93%) think the main risk factor for
developing breast cancer is having a family history, while
76% said a genetic predisposition is a major risk factor.
3 in 10
7 in 10
3 in 10 women said a healthcare professional has talked to them about
the risk of developing breast cancer, whereas nearly 7 in 10 women
said their doctor or healthcare professional has never discussed risk.
A high proportion of woman (84%) know someone
who has been diagnosed with breast cancer.
64%
Of these, 64% said they know someone who
has died as a result of their breast cancer.
35%
60%
49%
44%
55%
91%
46%
9%
When describing breast cancer, 60% of women associate the word
‘fear’ with the disease, 49% associate ‘uncertainty’ with breast
cancer and 35% associate the word ‘courage’ with breast cancer.
However, this differs when specifically describing mBC – as 55% of
women associate the word ‘fear’ with metastatic breast cancer, 46%
associate the word ‘death’ with metastatic breast cancer and 44% of
women associate the word ‘uncertainty’ with metastatic breast cancer.
The majority (91%) of women have not personally sought out information
about metastatic breast cancer in the past 12 months. Only a small
proportion (9%) have looked for information about metastatic breast cancer.
FURTHER RESOURCES
www.europadonnaireland.ie
www.mariekeating.ie
www.cancer.ie
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i.
National Cancer Registry Ireland. ‘Breast Cancer Incidence, Mortality, Treatment
and Survival in Ireland 1994-2009’ (PAGE 23) http://www.ncri.ie/sites/ncri/files/
pubs/BreastCancerIncidenceMortalityTreatmentandSurvivalinIreland1994-2009.
pdf Accessed August 25 2016
ii. The Global Status of metastatic breast cancer (mBC) Decade Report. Available
at http://www.breastcancervision.com/sites/default/files/Global_Status_of_
mBC_Decade_Report_Summary_FINAL.pdf. Accessed August 25 2016
iii. Metastatic breast cancer survey, sponsored by Pfizer Oncology
and conducted by iReach Insights June 2016.
iv. O’Shaughnessy J. Extending survival with chemotherapy in metastatic
breast cancer. The Oncologist. 2005;10:20-29. http://theoncologist.
alphamedpress.org/content/10/suppl_3/20.long. Accessed August 24 2016.
v. Cardoso F, et al. 1st international consensus guidelines for
advanced breast cancer (ABC1). Breast 2012; 21:242-252.
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PP-ONC-IRL-0036 Date of preparation September 2016