memorandum by Ms Kyriakides, rapporteur
1. Breast cancer is a disease that has existed for centuries but
for which the perception continues to evolve. Gradually, with the
efforts of patient advocates, scientists, media and governments,
silence around the disease has been broken, and it has changed from
being seen as a stigma to a disease that in many countries is setting the
pace for bringing about change in approaches to health care.
2. The life experience of breast cancer is similar for patients
(most of them women) across boundaries, race and religion. There
are, however, still many parts of the world where women continue
to hide their diagnosis, where optimum diagnosis and treatment are
not available and where fear of death is at the end of the process, not
hope and survival.
3. This is despite the fact that it is recognised today that
providing breast cancer care of guaranteed quality leads in the
medium and long term to improved survival rates, to savings for
the health-care system and to a better quality of life for patients.
It is necessary to call on all member States to ensure the optimal
minimal standards of care for all patients diagnosed with the disease.
4. Over the last decades, the scientific and advocacy community
have joined their efforts to increase awareness of the issues that
are relevant to breast cancer. Issues that have to do with diagnosis,
screening, with optimal care in breast units, with the rights of
women in employment and to insurance, as well as the importance
of palliative and end-of-life care.
5. The aim of the report is to highlight these issues, to ensure
that in the Council of Europe member States, efforts are directed
to reducing disparity and inequality in breast cancer services across
Europe. It is crucial that the lives of the hundreds of thousands
of women, men and families affected by the disease have the level of
care that they are entitled to, as defined by the European Parliament
Breast Cancer Resolutions of 2003 and 2006 and the European Charter
of Patients’ Rights.
I am not a breast cancer scientist myself, but I
am a member of the Europa Donna breast cancer advocacy group – whose
Executive Director, Ms Susan Knox, attended an exchange of views
with the Committee on Social Affairs, Health and Sustainable Development
in October 2013. Allow me to summarise the most important breast
cancer facts and figures here:Note
- Breast cancer is the most common
cancer and has the highest mortality of any cancer in women worldwide.
- Breast cancer is the most common cancer in European women
with an estimated incidence of 499 560 in 2012. Incidence in the
EU-28 in 2012 was estimated to be 367 090.
- There are twice as many new breast cancer cases annually
than new cases of cancer of any other type.
- One in 10 women in the EU-28 will develop breast cancer
before she reaches 80 years of age.
- An average of 20%-30% of breast cancer cases in Europe
occur in women when they are younger than 50 years old; 33% occur
at age 50-64 and the remaining cases in women above this age. Breast
cancer therefore affects many women during their years dedicated
to working and raising a family.
cancer claims the lives of more European women than any other cancer.
- In Europe, an estimated 142 889 women died from breast
cancer in 2012, 91 495 of whom were in EU-28 member States.
- Facts about lifestyle and breast cancer
- The increasing number of breast
cancer cases may be due to changes in lifestyle habits, increase in
sedentary lifestyle, weight gain and obesity and sociological changes
such as increasing age at first birth and decreasing number of children
born to women.
- Physical activity and weight
- Excess body weight and physical inactivity account for
approximately 25%-33% of breast cancer cases.
- There is an inverse relationship between body mass index
and breast cancer in pre-menopausal women and a direct relationship
in post-menopausal women.
- Physical inactivity is estimated to cause 10%-16% of all
breast cancer cases.
- The effect of weight loss is independent of physical activity.
- Alcohol consumption
three or more alcoholic beverages a day increases the risk of breast
cancer by 30%-50%, with each drink accounting for about a 7% increased
3 Understanding the
As Dr Alberto Costa from the European School of Oncology
pointed out at the hearing the committee held on this report at
its meeting in Strasbourg on 9 April 2014,Note
cancer is not one disease, but many”. For hundreds of years, the
only standard available treatment for all types of breast cancer
was surgery: removing the tumour, or the affected breast. In Dr
Costa’s words: “We always knew that despite the fact that we are
trying our best with every single patient, some of them would not
manage to survive the disease. Since we could not predict who was
going to survive we felt obliged to give the maximum tolerable treatment
to everybody: a mastectomy.” However, even a radical mastectomy
will not save the life – or even prolong the life – of every breast
In the last 20 to 25 years, significant advances have been
made in understanding breast cancer. The discovery of the make-up
of tumours has allowed the classification of different types of
the disease which go beyond classification by size and location
type (tubular or lobular), or the involvement or not of the sentinel lymph
nodes – it can now be measured how quickly a tumour grows, how quickly
it metastises, whether or not it invades the blood, whether it is
hormone receptive, etc. In the future, genetic profiling of tumours
may allow even better and clearer classification. At the same time,
advances in treatment – in particular for hormone-dependent tumours
– have given doctors effective treatment options which go beyond
surgery. This means far more individualised treatment is possible
now, it is no longer “one size fits all”. However, there is still
no 100%-effective “cure” for breast cancer: we are still waiting
for the equivalent of antibiotics for tuberculosis to be discovered.
According to Dr Nereo Segnan from the Department of Cancer Screening
of the University Hospital of Turin,Note
only one in
five breast cancer patients (with invasive cancer, not DCIS or LCISNote
saved due to the currently available treatments – but, because it
is currently practically impossible to predict which kind of cancer will
respond to aggressive chemotherapy, for example, many doctors still
feel obliged to “give the maximum tolerable treatment to everybody”.
9. At the same time, technology has evolved to a point where
it is possible to detect cancers at an ever earlier stage through
mammography screening programmes (see the next chapter). As Dr Segnan
pointed out during the hearing mentioned earlier, it is the combination
of organised screening programmes and more effective treatment which
has at last made a significant impact on mortality rates for breast
cancer in Europe in the past 20-25 years.
10. In this context, it is important to understand statistics
correctly. There is a lot of confusion even among educated professionals
when it comes to the correct interpretation of statistics. Allow
me to give you a few illustrative examples. Many women have been
shocked at the apparently inexorable rise of incidence rates of breast
cancer in the last century. However, this rise was due to many factors,
some of them statistical quirks: as less women died from infectious
diseases with the advent of better hygiene, the development of vaccinations
and the discovery of antibiotics, more women survived to die of
other causes – including breast cancer. As the life expectancy of
women increased, so did the chance of developing breast cancer within
one’s lifetime. This does not mean that certain societal changes
had no impact on the rising rates of breast cancer: thus, having
children at a younger age, having several and breast-feeding them
can protect against breast cancer, while having first menstruation
at an early age and menopause at a late age increase the probability of
developing breast cancer.
11. Another example is the focus on “survival rates”. Of course,
this is one of the first questions that many women will ask their
doctor when diagnosed with breast cancer – “How long do I have?”
However, the answer is not easy even now, due to the many sub-categories
of this disease. Some tumours are so aggressive, they will kill
a patient quickly at whatever stage the cancer is detected, and
whatever treatment is administered. Some cancers are not invasive
(for example DCIS and LCIS, which should arguably not be called
“cancers” at all), or grow and metastise so slowly, that the patient
would have survived (and died of other causes) at whatever stage
the cancer is detected, and whatever treatment is administered (including
no treatment at all). When making the leap from the individual to
the statistical level, this creates no end of misunderstandings.
For example, say a woman has an aggressive tumour which will kill
her at age 45. If the woman presents herself to doctors at the age
of 43 with symptoms, she is counted as having survived two years
after diagnosis. Had the same woman’s tumour been discovered via
a mammography screening at the age of 40, she would have been counted
as having survived five years after diagnosis. The same facts, the
same outcome, but statistically-speaking, the woman has just gained
three years of life, and the survival rate has gone up “due to early
screening”. Or take a woman with DCIS discovered via mammography
screening at age 40. She is aggressively treated, and dies of other
causes (not linked to breast cancer) at the age of 80. Has her life
been saved by the screening and the aggressive treatment as it will
be interpreted by some, positively affecting the breast cancer survival
rate? In fact, no: DCIS is by definition not invasive (the IS stands
for “in situ”), and thus does not kill. This is why it is so important
to teach the general public and patients themselves to interpret statistics
correctly and not to jump to conclusions.
4 “To Screen or Not
to Screen”: evidence and guidelines in a context of continuing debate
12. Mammography screening is the source of an ongoing
debate. There have been reports by a large number of experts, in
both the United States and Europe, evaluating the effectiveness
of mammography screening, assessing all the evidence (provided by
the European Breast Cancer Screening Network, the International
Agency for Cancer Research and World Health Organization (WHO)).
Europa Donna, the European breast cancer advocacy organisation representing
groups in 46 European countries, which continuously reviews all
the evidence, supports population-based mammography screening programmes
when carried out in accordance with the European guidelines for
quality assurance in breast cancer screening and diagnosis – meaning
a mammography every two years after a certain age, usually set at
It is unfortunate that there is often confusion caused by
the way media report the evidence related to breast cancer mammography
screening programmes. Dr Segnan explained the evidence very well
at the committee hearing: large-scale, organised breast-screening
programmes which conform to European guidelines do save lives when
combined with modern treatment. This is because it is not screening
or treatment as such which are having an impact on mortality rates,
but rather the combination of the two. The different large-scale
studies came to different conclusions regarding the extent of the
benefit which can be attributed to screening programmes,Note
the evidence points to significant benefits. Doctor Segnan thus
recommended that guidelines-compliant screening programmes should
continue – while warning against individual, ad hoc, non-organised
screening which can do more harm than good.
14. Dr Segnan also pointed out the drawbacks of screening, which
– while outweighed by the benefits – also need to be clearly communicated
to women so that they can make an informed choice about their participation in
breast cancer screening programmes: “false positives”, overdiagnosis
and overtreatment. The studies he cited showed that 20% of women
had been recalled after mammography screening for further check-ups (sometimes
including invasive procedures) in the last 20 years, most of which
had been “false positives”, namely the lesions detected had not
been cancerous. While the anxiety, stress and (in cases of invasive procedures
to exclude cancer) discomfort to women in this situation should
not be underestimated, the harm done is small compared to cases
of overdiagnosis leading to overtreatment.
Dr Segnan defined “overdiagnosis” as cases of cancer or precancerous
lesions such as DCIS or LCIS which would not have been detected
without mammography screening, namely they were not palpable or causing
symptoms. Diagnostic variability is high – thus, DCIS makes up between
4% and 23% of all screen-detected “cancers”.Note
is now known that DCIS and LCIS only rarely lead to invasive cancer,
and that “treatment” for these precancerous lesions should thus
be limited to keeping an eye on them via standard-interval mammography
screening. Sadly, not all doctors are aware of these recommendations,
and many women have suffered unnecessary mutilating surgery for
these conditions – which would, in most cases, never have turned
cancerous. This type of overtreatment is best avoided by following
guidelines to the letter and developing an alliance between organised
screening and breast cancer units (see next chapter).
16. From a public health point of view, the more women participate
in organised screening in the 50-69 year age group, the better the
public health outcome is (the evidence for the 40-49 year age group
is less clear: while the benefits are the same as concerns the numbers
of cancers detected, the harm for this age group is higher with
more “false positives” and overdiagnosis due to the denser breasts
of women in this age group). Communication materials given to women
do not always give an accurate representation of the benefits and the
risks of participating in screening programmes: this must change.
Women should be treated as adults and be allowed to make an informed
decision on whether or not they want to participate in screening
programmes, and this decision should be respected and not held against
them at a later stage. From the day mammography screening was introduced,
women have participated in screening programmes in high numbers.
Let's trust them to make the right decision – the decision that
is right for them.
To summarise: screening carried out according to the European
guidelines provides a significant benefit to women in improving
mortality rates from this disease when combined with modern treatment.
It is thus important for women to have access to screening programmes
that meet guidelines and to correct evidence-based information.
As evidence stands at the moment, mammography screening is the best
form of early detection of breast cancer available today and it
does improve mortality rates.Note
5 Specialist breast
units: increasing women’s quality of life and chances of survival
18. Evidence has shown that treatment of breast cancer
in a multidisciplinary breast unit has been proven to raise the
chances of survival and improve the quality of life. The European
Parliament, in its resolutions of 2003 and 2006 has called on European
Union member States to ensure nationwide provision of such units
in accordance with European guidelines by 2016.
19. All women, in Council of Europe member States and all over
the world, should have access to fully equipped, quality-assured
dedicated breast units that provide competent comprehensive care.
Breast care needs to be multidisciplinary. EUSOMA (the European
Society of Mastology) set out the requirements of a specialist breast
unit. The guidelines (updated in 2013) were built on evidence from
a multidisciplinary team of European experts.
The guidelines requires that an integrated breast unit must
deal with a sufficient number of cases to allow effective working
and continuing expertise,Note
have dedicated specialists working with a multidisciplinary approach.Note
guidelines emphasise the need for breast units to provide continuity
of care for patients with metastatic disease and a high-quality
palliative service. A breast unit also deals with benign disease.
21. As Dr Costa and Dr Segnan emphasised at the hearing, two more
important aspects go beyond the guidelines in their current form:
First of all, there needs to be an alliance between organised breast
cancer screening programmes and breast units, in order to reduce
overdiagnosis and overtreatment. Second, it is important to have
dedicated “breast nurses” in breast units, who can accompany patients
throughout diagnosis and treatment. This does not mean that doctors
should dedicate less time to their patients – on the contrary, high-quality
communication between the doctor and the patient is crucial for
shared decision-making. However, the presence of a breast nurse
during important discussions (when the diagnosis is given, or when
a choice needs to be made as regards treatment options) can be of
significant help to the patient.
22. Lastly, a footnote on gender. Breast cancer is a predominantly
female disease, and it affects a part of the female body which is
important to women's self-esteem (and which is regarded as important
for “sex appeal” and even “femininity” in society). It is not the
same for a women to suffer from breast cancer or from colon cancer,
for example. At the same time, the breast is not a “vital organ”
in the classical definition. This has led, historically, to the
reinforcement of a certain type of paternalistic attitude in doctors
which has further imbalanced the power relationship between doctors
and their patients. Women who feel that they have been included
in decision-making on their treatment have demonstrably better health
outcomes – suffering less from anxiety, depression and fatigue linked
to the disease and its treatment. It can be hoped that breast units,
with their emphasis on shared decision-making, can be part of the
way to reverse the historical trend.
6 Pink is not a colour
– it is an attitude: the power of the advocacy movement
23. Advocating for a cause has been part of human behaviour
for centuries. This is what is entailed in moving away from the
personal experience onto advocating for a cause that is far broader.
The importance lies in using a personal experience in a political
way to effect change. Advocacy can also lead to the changing of attitudes
and beliefs of society, as well as of standards.
24. Advocates need to be well informed and well-educated. Advocacy
is in itself an art, the art of changing public opinions. Cancer
advocacy can break taboos and stigmas. Breast cancer has been one
of the most dynamic fields where patient advocacy has resulted in
changing the face of the disease.
25. There is still much that needs to be done and advocating for
change is crucial. Great disparities continue to exist in the diagnosis,
screening and treatment of breast cancer across and within countries.
The need to advocate for change does not, however, only relate to
screening and treatments, but also to the need to protect women’s
rights in employment and insurance, and the right to have access
to clinical trials. Recent studies show that one fifth of breast
cancer patients do not return to work even though they are deemed
fit to do so. Furthermore, women who do return to work are often
faced with various forms of discrimination.
26. Breast cancer advocacy sites and support forums brim with
stories of discrimination against breast cancer patients in all
types of arenas, but hard evidence is more difficult to come by.
Many breast cancer patients are discriminated against at work: they
may be (unlawfully) fired, or harassed until they leave of their own
accord; they may be demoted, offered “easier” (and less well-paid)
jobs, passed over for promotions, offered only fixed-term contracts
or part-time work – the list is practically endless. Similarly,
when they want to buy health or life insurance, they may be refused,
or even (often unlawfully) excluded from existing insurance policies,
or asked to pay higher risk premiums – even if they have been cancer-free
for 10 years or longer. While breast cancer patients have the right
not to be discriminated against, such discrimination is often difficult to
prove, as so often with all kinds of discrimination cases – so many
victims of this kind of discrimination do not even try to take their
case to court. Much work still needs to be done by the advocacy
movement to raise awareness of this discrimination in order to name
and shame, and hopefully end it.
The issues that face breast cancer patients are complex –
funds need to be used for research in prevention, in genetic and
environmental factors, in building up country cancer registries,
as well as for research into a possible cure. Special attention
needs to be given to young women with breast cancer who face a different
set of issues and need services and information geared to their
needs, as well as to women living with metastatic disease.Note
28. Pink is not just a colour – the pink campaigns may seem to
be almost overoptimistic at times, and the attempts at their “capture”
by commercial enterprises have come in for some criticism. Knowing
the disparities that exist, they may even seem frivolous as breast
cancer is a serious disease, but pink is about an attitude that
we can create to build the momentum for change. The pink ribbons
need to be interpreted as far removed from the infantilising commercial
pink marketed to young girls: as a forceful, enabling, adult pink.
29. We have come a long way from the days when women
diagnosed with breast cancer were systematically subjected to mutilating
surgery and aggressive therapies with no regard for how this would
affect them and their quality of life. Thanks to the patient advocacy
movement, the stigma surrounding breast cancer has also been removed.
30. However, despite all the advances of the last 20 to 25 years
in detecting and treating breast cancer, mortality rates are only
coming down slowly. Most cases of invasive breast cancer are, unfortunately,
still incurable, though patients may survive much longer and enjoy
a better quality of life than in the last century. Breast cancer
is still the most common cancer and has the highest mortality of
any cancer in women worldwide – and thus continues to strike fear
into the heart of women.
Both the incidence rates and the mortality rates vary from
country to country in the Council of Europe. Some of the variations
are due to differences in lifestyles, genetic susceptibility and
age-related demographic make-up, but many of them reflect the lack
of optimum breast cancer services both with regard to guidelines-compliant
organised screening programmes and to modern treatment in specialised,
multidisciplinary breast units. With a strong emphasis currently
being laid on lifestyle-oriented prevention, and thus moved into
the sphere of individual responsibility, breast cancer has also
slipped from the top of many countries' health agendas.Note
32. Fighting breast cancer must return to the top of countries'
health agendas. All women (and genetically predisposed men) in member
States should have the right to access quality screening programmes,
a proper diagnosis and quality-assured modern treatment in specialised,
multidisciplinary breast units. And this right should not only exist
on paper, but be implemented in reality. Every member State should
have a national cancer registry which can provide reliable data
on the situation.
33. Finally, researchers in all member and observer States should
work together to further the understanding of the disease and improve
screening, diagnosis and treatment techniques with the goal of reducing
overdiagnosis and overtreatment, as well as improving mortality
rates and the quality of life of individual patients. And, of course,
to finally find a cure for breast cancer.