help us find the cures
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An action plan to tackle critical gaps in breast cancer researchTRANSCRIPT
Help us find the curesAn action plan to tackle critical gaps in breast cancer research
Found a lump 12 June 2048
Time to take actionFirst, we want to say a big thank you for your invaluable commitment to helping us overcome breast cancer. Thanks to your tireless efforts, we’ve made huge progress so far. But, there’s now much more to do, and time marches on. We need to stop thousands of people dying from breast cancer and we can’t do this without the dedicated backing of people like you. By working together we can find the cures more quickly. If we’re going to realise our aim of overcoming breast cancer in our lifetime, we need you here too, whether you’re:
• Undertaking research
• Taking part in research
• Helping raise funds
• Funding research with your donations
• Influencing for change
• Raising awareness
• Championing the cause
Help us find the cures sets out what we need to do together to reach our goals. The actions needed to make the difference have been identified and we must act now. The clock is ticking. So, let’s accelerate towards the time when breast cancer can be overcome and outlived.
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1. Risk and prevention
The time is now
2. Unlocking genetics
4. Understanding breast cancer biology
5. Improving treatment
6. Tackling secondary breast cancer
7. Living with and beyond breast cancer
8. Biobanking and enabling research
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3. Early and effective diagnosis
Page Contents
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We’re heading towards a future where breast cancer can be overcome and outlived. But to reach vital milestones we must address the critical gaps now.
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The time is now We’ve made great progress in overcoming breast cancer over the past 20 years. Awareness has improved. Detection is now earlier and better. Thanks to research that started in the laboratory decades ago, new, more effective therapies and treatments have been introduced. The patient is now the focus of the treatment and we know more about the molecular profile, stage and pathology of her (or in rare cases, his) tumour, to help determine the best treatment combination currently available.
Five-year survival rates have improved significantly and over 80 per cent of women diagnosed with breast cancer today will be alive in five years’ time. Forty years ago, only 50 per cent of women survived for at least five years after diagnosis.
But we have so much to do. Breast cancer is still the most common form of cancer. Thousands die every year, millions of us live with its effects and urgent action is vital.
Jan has had treatment for breast cancerPhoto credit: Charlie Campbell
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Breast cancer is the most commonly diagnosed cancer in the UK.
Sadly, around
12,000 lives are lost to the disease every year.
By 2030, it’s estimated that around 185,000* lives could be lost to the disease.
2030
Around
570,000** people are thought to be living with or after a breast cancer diagnosis in the UK.
This figure is estimated to rise to
over 1.2 million** women by 2030
due to an ageing population and continued improvements in survival rates.
Incidence, mortality and survival statistics courtesy of Cancer Research UK.
*Projected total number of female deaths from breast cancer in the UK for 2014–2030. Calculated by the Statistical Information Team at Cancer Research UK, September 2013, based on data from Sasieni P, et al. Cancer mortality projections in the UK to 2030 (unpublished). Analyses undertaken and data supplied upon request; September 2012. Similar data can be found on the Cancer Research UK Cancer Statistics website
**Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. British Journal of Cancer 2012; 107: 1195–1202.
With around 50,000 women
and 400 men diagnosed each year.
That’s around 138 people a day.
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Addressing the gaps
There has to be global collaboration on the best ways to study breast cancer.
In 2013, to achieve a consensus on the future of breast cancer research, Breast Cancer Campaign brought together leading internationally-recognised breast cancer experts and patient advocates to explore which gaps in research, if filled, would bring the greatest patient benefits. The Gap Analysis: Critical research gaps and translational priorities for the successful prevention and treatment of breast cancer, published in the journal Breast Cancer Research on 1 October 2013, identifies ten fundamental research gaps that need attention and proposes overarching solutions designed to address them. The gaps are:
1. Understanding how genetic changes lead to the development of breast cancer.
2. Identifying sustainable lifestyle changes, such as diet and exercise, which can reduce a woman’s risk of breast cancer, as well as improving risk-reducing drugs (chemoprevention) for women at increased risk of the disease.
3. Targeting breast screening to those who will most benefit, by finding accurate and practical ways to calculate someone’s individual risk of developing breast cancer.
4. Understanding the molecules and processes that encourage different types of breast cancer to grow, and those that allow breast tumours to become resistant to treatments and spread throughout the body.
5. Understanding how cancer cells with different characteristics form within a tumour, why cancer cells sometimes go into hibernation, and why some breast cancers are resistant to treatment from the outset, whereas others become resistant over time.
6. Developing tests to predict how well patients will respond to chemotherapy or radiotherapy.
7. Understanding how to use combinations of drugs and other therapies to improve and tailor treatment for each individual.
8. Developing better ways of using imaging to diagnose breast cancer, track how the disease responds to treatments and monitor its spread throughout the body.
9. Providing effective and practical support to help people deal with the emotional impact of breast cancer and the side effects of treatment.
10. Collecting tumour tissue and blood samples donated by breast cancer patients at different stages of their disease, alongside detailed anonymous information about each patient, to help study the disease and develop new treatments.
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Our five strategic solutions to address the gaps urge researchers in academia and industry, funders, donors, policy makers, parliamentarians and patients to work together to achieve significant progress. The solutions are to:
1. Reverse the decline in resources targeted towards breast cancer research. Funding must be increased and strategically directed to enhance our current knowledge, develop the talent pool, and apply evidence-based findings to improve clinical care.
2. Develop a fully cohesive and collaborative infrastructure to support breast cancer research, including access to appropriate, well-annotated clinical material, such as longitudinal sample collection with expert bioinformatics support and data sharing.
3. Find better ways to study breast cancer and test treatments in the laboratory, and identify accurate methods to use in clinical practice to predict how patients will respond to treatments.
4. Encourage collaboration between researchers in different scientific fields, including computer technology, physics and engineering, and support clinicians to do research.
5. Improve clinical trial design to better meet the complexity of modern treatment options and involve patients in the design process.
High-quality research is critical for finding the cures for breast cancer. To achieve rapid progress in research over the next decade, the scientific community needs to:
• agree on the key gaps that remain to be targeted in coming years
• identify solutions
• achieve global collaboration on the best ways to study breast cancer.
While research is essential, it’s also vital that the findings bring the greatest benefit to patients day-to-day. We need a broader, more supportive environment for breast cancer research, and a health service that can aid the development and translation of scientific knowledge. To deliver this, cancer strategies across the UK should be up-to-date and reported on regularly. We’ll continue to press for an environment that enables new interventions, new treatments, and better information and support to reach everyone who needs them.
Finding the solutions
High-quality research is critical for finding the cures for breast cancer.
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But, we’re optimistic about the future. If we act now, working alongside many others to reach vital milestones, we believe breast cancer can be overcome and outlived by 2050.
We’ve stated our hopes and ambitions for the future across eight critical areas of our work and committed to 66 key actions, which we will take over the next decade.
We need at least £100 million over the next decade to specifically target the critical gaps and enable our scientists and clinicians to fill them.
We aim to increase our previous investment in every area, and have created a new Collaborators for a Cure Fund, dedicated to addressing persistent research gaps in areas such as risk and prevention and living with breast cancer.
For each area, we reflect on our progress, where we are now thanks to research, and what we’ve achieved over the years. We consider how much there’s still to do, and, most crucially, we set out clear sets of actions for how we must work together to accelerate towards a time where we find the cures for breast cancer.
If we don’t act now, by 2030 around 185,000* lives could be lost to breast cancer and 1.2 million** could be living with the disease.
Our ambitions
*Projected total number of female deaths from breast cancer in the UK for 2014-2030. Calculated by the Statistical Information Team at Cancer Research UK, September 2013, based on data from Sasieni P, et al. Cancer mortality projections in the UK to 2030 (unpublished). Analyses undertaken and data supplied upon request; September 2012. Similar data can be found on the Cancer Research UK Cancer Statistics website
**Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. British Journal of Cancer 2012; 107: 1195-1202.
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Risk and prevention: By 2025, we hope individual breast cancer risk will be more precisely predictable and up to 20% of all breast cancers will be prevented.
Early and effective diagnosis: By 2025, we hope over 60% of breast cancers will be diagnosed before they are symptomatic.
Improving treatment: By 2025, we hope improved and more personalised treatments for breast cancer will reduce mortality from breast cancer by half.
Living with and beyond breast cancer:By 2025, we hope all those diagnosed with breast cancer, and the people close to them, will receive individually tailored information and support to meet their needs, to help them live with and manage the consequences of breast cancer and its treatment.
Unlocking genetics: By 2030, we hope all patients will benefit from individual care and treatment made possible by understanding all of the genetic variables relating to breast cancer.
Understanding breast cancer biology:By 2030, we hope what causes different tumours to grow and progress will be identified, enabling us to select the best treatment for every patient.
Tackling secondary breast cancer:By 2020, we hope 25% fewer people will develop secondary breast cancer and by 2030 more than half of those who develop secondary breast cancer will survive beyond five years.
Biobanking and enabling research: By 2023, we hope a fully cohesive and collaborative infrastructure to support breast cancer research across the UK will be in place, speeding up the pace of discovery and translation into patient benefit.
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2050
The critical areas are:
Time is pressing on. Let’s work together to fast-track progress in finding the cures for breast cancer.
Our ambitions
Overcome breast cancer
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1. Risk and prevention
The best weapon in overcoming breast cancer is the ability to stop the disease occurring in the first place. To do this, we need to know who is most at risk and how we can best prevent the disease.
Charlotte underwent a risk-reducing double mastectomy
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Where we are now
Breast Cancer Campaign has funded risk and prevention projects worth £2 million. Among many notable achievements, our researchers have:
• Identified that a highly calorific diet in a woman’s mid-thirties to mid-forties can increase the density of her breasts in her fifties. People with dense breast tissue are more likely to develop breast cancer and this work helps us understand the role of diet in breast cancer and who might be at greatest risk.
• Identified components of diet and lifestyle linked to ‘epigenetic’ changes to DNA (molecular changes that tell the cell how the genes should be read).
• Found the first direct link between breast cancer risk and genetically determined levels of oestrogen in pre-menopausal women. Potentially, this information could form part of a genetic test that could help predict young women’s risk of breast cancer.
By 2025, we hope individual breast cancer risk will be more precisely predictable and up to 20% of all breast cancers will be prevented.
In the past we had:
No understanding or advice about ways for women to reduce their risk of breast cancer.
Little knowledge about how people’s lifestyle choices could affect their chance of developing breast cancer.
We now have:
Greater knowledge, meaning we can help women to start to reduce their risk of developing the disease.
Measures to limit breast cancer risk such as preventative surgery (mastectomy/ovary removal), which can be offered to people found to have a high risk of the disease due to their family history.
Drugs offered to women at increased risk of breast cancer for preventive purposes.
2013 2030
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Still so much to do
Our Gap Analysis revealed we’re only at the tip of the iceberg. We can’t yet accurately identify an individual’s risk of breast cancer or prevent a significant proportion of cases. Key questions we still need to get to grips with include:
• How does lifestyle trigger breast cancer? We don’t yet understand how risk factors, like being overweight, actually link with the molecular mechanisms responsible for breast cancer. We need to know this to effectively target these mechanisms, via lifestyle interventions or drugs, to reduce breast cancer risk.
• Who’s at increased risk? Current methods of determining a woman’s risk of developing breast cancer are not particularly reliable. More accurate risk models are vital, so we can adopt a ‘stratified’ approach to breast screening based on individual risk and offer targeted lifestyle advice.
• How can we help people change their lifestyle? A lot of prevention research aims to change lifestyle behaviours for the long-term in groups of women known to be at increased risk. But it’s difficult to sustain lifestyle changes. We need to learn a lot more about which approaches are the most effective.
• Who should we target with chemoprevention? We can’t yet predict which women will respond to the drugs tamoxifen and raloxifene to prevent breast cancer. To target drugs at the right women, we need studies to reveal who they’re most likely to work for.
1. Risk and prevention
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance our work in this area, and we are committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
Aim to quadruple our investment in research, campaigning and education over the next ten years to £8.5 million to tackle this critical area.
• Aim to fund or facilitate a meta-analysis of existing evidence on the role of calorie-restricted weight loss in the prevention of breast cancer relapse after surgery.
• Seek to fund research that will provide insight into which women at high and moderate risk of the disease will benefit most from chemoprevention drugs tamoxifen and raloxifene.
• Look to fund research that furthers our understanding of breast density as a breast cancer risk factor and how this knowledge is best applied to help stratify screening based on risk.
• Introduce the routine collection of breast density data and the collection of mammographic imaging data into the Breast Cancer Campaign Tissue Bank.
• Raise awareness of lifestyle changes women should know about to help reduce their risk of breast cancer.
We call on:
• Public Health England (PHE) to conduct an audit of existing lifestyle information and advice aimed at preventing breast cancer. PHE should work with NHS Choices and Health and Wellbeing Boards to integrate relevant prevention messages into their broader health messaging and activities.
• The NHS Breast Screening Programme to take account of evidence on breast density as a risk factor, as it emerges, and to use this evidence to enable the potential stratification of women’s breast cancer risk in future. We also call on the scientific and clinical community involved in conducting risk and prevention trials to routinely collect breast density data.
The Implementation Team at the National Institute for Health and Care Excellence (NICE), to ensure that information is swiftly provided to healthcare professionals on the availability of chemoprevention drugs. We also ask that NHS England’s Innovation Scorecard includes information on the uptake of chemoprevention drugs.
We can’t yet accurately identify an individual’s risk of breast cancer or prevent a significant proportion of cases.
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2: Unlocking genetics
Understanding the genetics of breast cancer is critical to understanding how to overcome and ultimately prevent the disease.
Emma, carrier of the BRCA1 mutation, has had risk-reducing surgeryPhoto credit: Abigail Zoe Martin
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Where we are now
Breast Cancer Campaign has invested over £11 million in projects in this area of research. Among many notable achievements, our researchers have:
• Played a key role in discovering eight new genes that are involved in breast cancer: BRIP, PALB2, ATM, Caspase 8, NRG1, RASSF2, SLIT2, SLIT3. These include genes that stop mistakes occurring in our DNA and genes that block the actions of cancer-causing genes.
• Identified a gene, NRG1, which gives us vital information about a new mechanism that causes the disease.
• Discovered that certain epigenetic changes are related to different risks of developing breast cancer.
We also supported proposals to extend access to genetic testing as part of the review of the NICE Familial breast cancer guideline, ensuring more women at increased risk can benefit.
By 2030, we hope all patients will benefit from individual care and treatment made possible by understanding all of the genetic variables relating to breast cancer.
Little knowledge about any of the genes involved in breast cancer or their impact on treatment responses.
No proof that breast cancer could be inherited, even when it had killed many members of the same family.
No genetic test to establish which women with a family history of breast cancer were at risk.
No NHS Breast Screening Programme to monitor women. All they could do was wait and see.
We now have: Knowledge that inherited mutations in breast cancer genes, BRCA1 and BRCA2, give people up to an
85% risk of developing breast cancer, and up to 50% risk of ovarian cancer.
Greater knowledge about how other genes may influence the development and treatment of non-inherited breast cancer.
Genetic testing, regular screening, preventative surgery, chemoprevention and lifestyle advice.
First evidence that epigenetic changes can indicate that someone has a higher risk of breast cancer.
Interventions to prepare women for genetic testing, support decisions about whether or not to have genetic testing and support gene carriers following genetic testing.
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In the past we had:
2013 2030
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Still so much to do
Technology is advancing rapidly and we’re learning more all the time, but we still don’t know enough about the genetic changes that lead to breast cancer. Our Gap Analysis revealed that there are many important questions we have yet to answer, if we are to find the cures for breast cancer, including:
• Which BRCA mutation carriers will develop breast cancer? We don’t know for certain which BRCA mutation carriers will develop breast cancer. We need to understand which subtle variations confer higher or lower risk and what other factors modify this risk for each individual.
• How do other genes affect risk? There are many genetic variations that are likely to be more common in the population than BRCA faults, but have a smaller impact on risk. Women with a combination of lots of these variations could have a high risk of breast cancer, but may not have a family history of the disease. Large studies are needed to identify these lower-risk genetic variations.
• With so much data, how do we analyse it? Increasingly vast amounts of data are being generated from genetic studies. To effectively use this data, we need to expand our bioinformatics capacity (ie, using statistics and computer science to analyse biological data), and employ more skilled specialists to handle and interpret it.
2: Unlocking genetics
Normal breast epithelial cells
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance our work in this area, and we are committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to increase our investment in genetics and epigenetic research projects and campaigning work to £13 million over the next decade.
• Address gaps in our understanding of specific functions and interactions of genetic and epigenetic changes in the normal breast and the development of cancer.
• Fund research into how genes influence the outlook for younger women.
• Promote the use of the latest results of groundbreaking research into new genes identified in inherited breast cancer and epigenetic research into predictive markers and tests.
We call on:
• Genomics England to assess the evidence in the 2013 Gap Analysis and review their decision not to focus on breast cancer in the 100,000 Genome Project based on this information.
• NICE to monitor the implementation of its Familial breast cancer guideline, including annually surveying genetic testing centres in England. We also encourage NICE to regularly review research relating to this guideline to ensure emerging findings quickly translate into patient benefit. We also request that the next guideline review considers the issue of whether to proactively identify women at increased risk.
• UK and international donors and funding bodies to fund epigenome-wide association studies, which are needed to reveal epigenetic risk and prognostic markers of breast cancer, and translational research to understand and validate these markers.
We still don’t know enough about the genetic changes that lead to breast cancer.
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3: Early and effective diagnosis
Diagnosing breast cancer quickly and accurately is vital, as the earlier breast cancer is diagnosed and treated, the greater the chances of survival. Breast awareness and breast screening play fundamental roles in early diagnosis.
Pat underwent surgery to remove pre-cancerous cellsPhoto credit: Michael Thomas Moore
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Where we are now
By 2025, we hope over 60% of breast cancers will be diagnosed before they are symptomatic.
Little breast cancer awareness and the disease was not openly talked about.
People diagnosed at a later stage in their disease.
No NHS breast screening service available in the UK.
Limited biopsy options for use in diagnosis.
Little knowledge about the different types of breast cancer, resulting in limited knowledge about chances of survival and the best way to treat individuals.
We now have:
Development of a ‘Five point code’ breast awareness message.
People being diagnosed earlier, thanks to
breast screening, breast cancer awareness and quicker referral.
‘Triple assessment’ for diagnosis: breast examination, mammogram or ultrasound scan, core biopsy and/or fine needle aspiration of any potential tumour.
Ability to identify molecules in the cancer cells (eg, HER2, oestrogen and progesterone receptors) that help oncologists to decide the best course of treatment.
Routine breast screening for women aged between 50 and 70 in the UK.
Grade and stage information about breast tumours, on their size, growth rate and likelihood of spread.
In the past we had:
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2013 2030
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Breast Cancer Campaign is committed to research into improving diagnosis and has funded projects worth £3 million in this area. Among many notable achievements, our researchers have:
• Developed tiny molecules called aptamers that can seek out and attach themselves to breast cancer cells. Aptamers contain a tiny amount of radiation, so they can be viewed inside the body using scanning technology (like an X-ray), and hold great promise as an early detection system for breast and other cancers.
• Discovered that an imaging technique, Positron Emission Tomography-Computed Tomography (PET-CT), could be used to identify the clinical stage of tumours before surgery, ensuring that patients receive the most appropriate treatments as early as possible.
• Discovered that breast tumours can be categorised into at least six different ‘types’, allowing clinicians to better understand how each person’s cancer is likely to progress and help them choose the best treatment at diagnosis.
We’ve also consistently sought opportunities to promote breast awareness. We’ve undertaken surveys to better understand and increase levels of awareness of breast cancer and the signs and symptoms of the disease, and also provide women with monthly reminders to be breast aware. Also, for a number of years we’ve highlighted concerns about the limited awareness of the link between increasing age and risk of breast cancer and the need for action to address this.
Still so much to do
Our Gap Analysis showed that we’re getting better at earlier diagnosis but more needs doing, to ensure that one day all breast cancers will be diagnosed early and treated successfully, including:
• How can we avoid over-diagnosis? We can’t yet predict with full confidence which tumours, detected via screening, will develop into life-threatening cancer. So, some women may have treatment for a tumour that may never have gone on to cause a major problem (known as over-diagnosis). We need better technology and procedures to avoid this issue.
• What is the best approach for assessing breast density? We need superior methods of measuring breast density and we need to understand how it relates to breast screening performance.
• How can we increase breast awareness? We need to ensure that women understand the signs and symptoms of breast cancer and what action to take if they have any concerns.
3: Early and effective diagnosis
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance our work in this area, and we’re committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to more than double our investment through our research programmes and our campaigning and education work to £7 million over the next decade.
• Fund work which develops more tailored screening approaches for those who will most benefit, by finding accurate and practical ways to calculate individual breast cancer risk.
• Continue to fund a large scale clinical trial in younger women with a family history and increased risk of breast cancer, to determine how effective mammography is in detecting breast cancer earlier in these women.
• Fund research into a cutting-edge new technique, computer modelling to analyse ‘3D mammograms’, which hopes to develop a better way to identify higher breast density in women.
• Collaborate with others to improve the effectiveness and reach of current messages around breast cancer signs and symptoms, to aid the earliest possible detection of the disease.
We call on:
• Public Health England to secure funding to extend the NHS Breast Screening Programme’s age extension trial to women aged 74–76 in the first instance, following the recommendation from the All Party Parliamentary Group on Breast Cancer (APPGBC)’s inquiry into older age and breast cancer.
• The NHS Breast Screening Programme to monitor and evaluate the impact of its new leaflet communicating the risks and benefits of screening, including over-diagnosis.
• Public Health England to fully evaluate the impact on women over 70 of the 2014 Be Clear On Cancer breast cancer campaign in England. If effective, promotion of this campaign should continue in future years. The Scottish Government should also continue the Detect Cancer Early breast cancer campaign.
We’re getting better at earlier diagnosis, but more needs to be done.
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4: Understanding breast cancer biology
We need to know what kick-starts breast cells to become cancerous, and tumours to form, and what triggers their growth and makes the disease progress for each patient. And we need to understand the key genes, molecules and matrix of lifestyle factors that drive breast cancer development and progression, to develop new treatments to beat breast cancer.
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Breast Cancer Campaign has invested £12.5 million in projects in this area of research. Among many notable achievements, our researchers have:
• Provided greater insight into how Ductal Carcinoma In Situ (DCIS) – very early stage tumour – progresses to invasive disease, and identified that two of the molecular factors involved seem to be the Notch pathway and the HER2 protein; factors already known to play a role in other forms of breast cancer. Confirmation of HER2’s role in DCIS has led to a clinical trial to see if Herceptin, a drug that targets HER2, could help stop cancer developing or DCIS returning in some women.
• Contributed to a broad acceptance in the scientific community that cancer stem cells play a role in breast and other cancers. Researchers have discovered a number of proteins that other scientists can now use to identify and potentially target breast cancer stem cells. They have also found a number of promising factors that have an effect on stem cell activity both in the laboratory and in mouse models of breast cancer.
Where we are now
By 2030, we hope what causes different tumours to grow and progress will be identified, enabling us to select the best treatment for every patient.
Limited knowledge about the different types of breast tumours and their impact on how a person’s cancer would develop and respond to treatment.
Limited knowledge of the role that lifestyle factors play in breast cancer development.
Minimal understanding of how breast cancer cells were able to proliferate and spread.
We now have:
Much greater knowledge, and more reliable ways to predict how each tumour is likely to progress and respond.
Better understanding of triple negative breast cancer.
Better understanding, allowing scientists to
develop tailored drugs for specific subtypes of the disease.
More information about the
molecules and processes that drive breast cancer development.
In the past we had:A B
2013 2030
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Still so much to do
Breast cancer biology is complex and our Gap Analysis confirmed there are still many things we don’t yet know, including:
• How do breast cancer cells communicate? We need to find out how these cells talk to each other and their surrounding tissue as they develop. We need to know how DCIS progresses to invasive disease, how tumours form blood vessels to obtain nutrients and oxygen for growth, and what the key signalling events in these processes are, so that we can inhibit them with targeted drugs.
• How can we best mimic breast cancer in the laboratory? We need more tumour cell lines representing the many subtypes of the disease at various stages, from pre-cancerous to metastatic, to better model breast cancer in research. We also need improved laboratory models of blood vessel formation in tumours, how cancer cells spread from the breast and how they become resistant to treatment.
• What is the role of circulating tumour cells (CTCs)? Tumour cells can be detected in the blood of breast cancer patients but we don’t understand the role of these CTCs. We need to identify where they come from, what they do and how they can help us improve treatment decisions.
4: Understanding breast cancer biology
Primary myoepithelial
cells
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance work in this area, and we are committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to increase our investment to £14 million over the next decade through our research funding, particularly to address the gaps in knowledge around the molecular drivers behind breast cancer subtypes, and the lack of clinically annotated, sequential tissues for translational research.
• Fund further research into triple negative and basal-like breast cancer, subtypes of breast cancer with poorer outcomes partly due to there being no currently available targeted treatments.
• Develop a mechanism to collect normal breast tissue to be able to better study it, and understand the changes in the breast as breast cancer develops.
• Make the world’s largest collection of male breast cancer samples accessible to researchers via our Tissue Bank.
We call on:
• NICE to ensure that its clinical guideline Early and locally advanced breast cancer: diagnosis and treatment is able to be rapidly updated with relevant information relating to the treatment of DCIS, once further evidence emerges.
• STEMNET to publicise and promote a breast cancer curriculum package to STEM ambassadors for use in outreach and careers awareness projects.
We could develop new more effective treatments if we understood the key factors that drive breast cancer development.
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5: Improving treatment
After diagnosis, breast cancer patients are offered a range of treatments to remove or destroy their cancer and stop it from coming back. As each person’s breast cancer is different, the breast care team and laboratory staff will carry out tests to see exactly which therapies and drugs will be most appropriate.
Jan lost her mum and step mum to advanced breast cancer Photo credit: Charlie Campbell
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Where we are now
By 2025, we hope improved and more personalised treatments for breast cancer will reduce mortality from breast cancer by half.
No specialist healthcare professionals trained to support patients throughout their treatment journey.
Patients operated on by a general surgeon and no specially trained breast care nurses.
Basic radiotherapy techniques.
Less targeted radiotherapy, leading to increased risk of heart damage and other side effects resulting in distress and body image concerns.
Only one type of chemotherapy regime available to patients.
Limited use of tamoxifen and no targeted treatments.
We now have:
Multidisciplinary teams comprising surgeons, breast care nurses, oncologists, radiologists and pathologists, with a better understanding of the impact of treatment on patients and their families’ quality of life.
Breast conserving surgery as an option for many women, limiting the amount of breast tissue removed.
Many more chemotherapy treatment options.
Reconstructive surgery as an option for patients who need a mastectomy.
More precisely targeted radiation therapy.
In the past we had:
More accurate, more advanced radiotherapy usually initiated earlier.
Widespread use of tamoxifen and new targeted treatments such as aromatase inhibitors and Herceptin.
No reconstruction for women whose breasts were removed.
Mastectomies as the most common breast surgery.
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Still so much to do
Our Gap Analysis identified that we still need to find out a lot more if we are to increasingly personalise treatments and reduce their side effects, including:
• How can we use imaging to improve treatments? Research is needed to see whether imaging can help predict a patient’s response to treatment and identify resistant disease earlier.
• What is the gold standard sequence of common treatments? This is not clear to clinicians, so we need basic trials of old and new drugs.
• How can we personalise treatment? For all subtypes of breast cancer, we need to uncover biomarkers present in the tumour or blood that reliably indicate how a patient is likely to respond to particular treatments. This will help tailor the type and intensity of treatments.
• Which patients might safely avoid some treatments completely? We need to identify which patients could be spared some standard treatments that may give little benefit to the individual patient and have potential side effects. This could apply to radiotherapy, drug therapy and even surgery in some patients.
• How and why can breast cancers change over time? The subtype of a breast cancer may change during treatment and disease progression but we don’t know how. This might explain why some become resistant to treatment. We need to collect sequential tumour samples on a large scale to understand this and make better decisions about treatment.
5: Improving treatment
Breast Cancer Campaign has invested £13.5 million in projects investigating treatments. Among many notable achievements, our researchers have:• Conducted the largest clinical trial worldwide
of a new form of treatment, Intensity Modulated Radiotherapy (IMRT), which allows the radiation dose to be smoothed out across the breast, getting rid of unwanted areas of high dose. Results show that IMRT gives a better breast appearance and reduces the risk of telangiectasia (broken blood vessels near the surface of the skin). These results are practice-changing and will drive the uptake of IMRT in the UK and internationally.
• Discovered that telangiectasia, a side effect of radiotherapy, can be an indication of later heart problems in some breast cancer patients. This could help clinicians monitor patients at increased risk of heart disease as a result of their treatment.
• Found a key gene, called FKBPL, that could be used to predict which patients will respond well to tamoxifen, and which won’t, so additional treatments can be given.
• Found that a protein, calpain-2, could help predict survival outcomes for women with the most aggressive types of breast cancer, triple negative and basal-like. Knowing more about survival outcomes can help doctors tailor treatment to each patient.
We also funded a specialist breast tutor at the Royal College of Surgeons of England to provide the UK’s first surgical courses aimed at training the breast surgeons of the future. And, we also highlighted the difficulties experienced by older women with breast cancer and, alongside Breakthrough Breast Cancer and Breast Cancer Care, supported the APPGBC inquiry into older age and breast cancer.
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance our work in this area, and we’re committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to increase our investment in research and campaigning to £15 million, to ensure we’re at the forefront of tackling gaps in treatment research. We’ll specifically encourage and fund research into biomarker validation and research to improve radiotherapy and surgical treatments.
• Create a clinical development grant funding stream for researchers to translate new and promising therapeutic or diagnostic discoveries.
• Fund pioneering work into how to: predict responses to treatment; harness the immune system to specifically destroy breast cancer cells; understand how cancer stem cells contribute to cancers returning and treatment resistance; reduce the risk of side effects as a result of some chemotherapy treatments.
We call on:
• NHS England to commission a breast cancer audit, as committed to by the Department of Health in 2011.
• NHS England to ensure the continuance of breast network site-specific groups, which were previously part of Cancer Networks and now should be part of Strategic Clinical Networks.
• Representatives from Academic Health Science Networks to collaborate with the National Cancer Research Institute’s Breast Cancer Clinical Studies Group, and through them international efforts, to support rapid translation of promising breast cancer therapies.
• The Department of Health and NHS England to ensure there are effective transition plans in place once the Cancer Drugs Fund comes to an end. Also, with the introduction of the new Value Based Pricing system, any impact on the availability of breast cancer drugs should be closely monitored and reported on, to ensure availability of treatments that bring notable patient benefit.
• NHS England to ensure the necessary infrastructure is in place to meet the need for radiotherapy, including new equipment and trained staff, and that there is access to IMRT for all those who would benefit from it.
• The National Cancer Intelligence Network (NCIN) to conduct an analysis of the diagnosis and treatment of older women with breast cancer and report back on this to Ministers, NHS England and Clinical Commissioning Groups, and NHS England to report on how the Breast Cancer Quality Standard statement covering older people’s access to treatment will be monitored at a national level. Both recommendations were covered by the APPGBC in their report Age is Just a Number.
We still need to find out a lot more if we are to increasingly personalise treatments.
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6: Tackling secondary breast cancer
When cancer spreads from the breast to other parts of the body, such as the bones, lungs, liver and brain, it can sometimes be treated and controlled, but not cured. Ultimately, this is the main reason why people die from the disease.
Adrienne, living with secondary breast cancer
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We have funded projects worth £7.5 million in this area. Among many notable achievements, our researchers have:
• Filmed breast cancer cells spreading in ‘real time’. This pioneering work has given other scientists trying to combat secondary breast cancer a further glimpse of exactly how tumour cells move; pictures that will help to unlock the secrets of this complex process.
• Identified the different needs of women with secondary breast cancer, contributing to Breast Cancer Care’s establishment of the Secondary Breast Cancer Task Force to lobby Government to tackle gaps in treatment, support and care for these patients.
Where we are now
By 2020, we hope 25% fewer people will develop secondary breast cancer and by 2030, more than half of those who develop secondary breast cancer will survive beyond five years.
Very minimal understanding of how breast cancer cells were able to spread to other parts of the body.
Very few treatments once a patient’s breast cancer had spread to other parts of their body.
A short life expectancy with a diagnosis of secondary breast cancer.
No specially trained teams of healthcare professionals and breast care nurses for secondary breast cancer.
Little focus on the emotional impact of breast cancer on patients and their families.
We now have:
Better understanding of the different ways in which breast cancer spreads.
Provision of more appropriate specialist support and care.
More extensive and effective treatments to control and manage the spread of breast cancer.
Better understanding that patients with secondary breast cancer have different experiences and needs to other patients.
A better life expectancy and more options to improve quality of life.
In the past we had:
2013 2030
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Still so much to do
Unfortunately, secondary breast cancer is not yet preventable or curable. Our Gap Analysis highlighted the need to do much more to understand the biology of the disease and how to effectively tackle it. Key questions include:
• How does secondary breast cancer occur? We need to understand when and how cancer cells escape and spread to become incurable metastatic breast cancer, if we are to find ways to prevent this becoming life-threatening.
• How can treatment of metastatic disease be improved? We need more research into how novel therapies and combinations of existing drugs affect metastatic breast cancer, in order to optimise the treatment that patients receive.
• How can we best support people living with advanced cancer? We need to find out exactly how many people are living with secondary breast cancer to assess the level of support that’s needed. Healthcare professionals also need guidance on how best to help people living with advanced disease as standards and consistency of treatment and care vary across the country.
6: Tackling secondary breast cancer
Primary myoepithelial
cells
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance work in this area, and we’re committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to increase our investment to £11.5 million in research and campaigning over the next ten years, to fill the gaps in tackling secondary breast cancer and drive improvements for women who are affected.
• Support research to determine the role the normal cells surrounding the tumour play in secondary cancer spread and response to treatment.
• Expand our collection of metastatic cancer samples and begin to collect sequential tissue samples via our Tissue Bank, to enable scientists to study treatment response, resistance, indicators of relapse and progression from primary to metastatic cancers.
• Fund further research into the critical issue of bone metastasis, affecting around 70% of patients with advanced breast cancer.
• Better determine a patient’s response to treatment for secondary breast cancer using imaging techniques, improving the chances of survival and quality of life.
• Test the effectiveness of existing drugs to identify a successful treatment to control the spread of triple negative breast cancers.
We call on:
• The National Cancer Patient Experience Survey to ask respondents if they have secondary breast cancer, to enable data on the experiences of women with secondary breast cancer to be analysed separately. Specific questions to fully understand the experiences of people with secondary breast cancer should also be included in the survey.
• NHS England to commit to an annual, published review of compliance with the Breast Cancer Quality Standard, particularly the statements relating to the need for patients with local recurrence, regional recurrence and/or distant metastatic disease to be treated and cared for by a multidisciplinary team (MDT), and for patients with recurrent or advanced breast cancer to have access to a Clinical Nurse Specialist (CNS).
• NHS England to include indicators in relation to both MDTs and CNSs in the Clinical Commissioning Group Outcomes Indicators Set, reflecting the statements on these in the Breast Cancer Quality Standard.
NICE to review their guideline Advanced breast cancer: diagnosis and treatment to take into account recent evidence of the benefits a biopsy of recurrent or metastatic breast cancer can deliver.
Secondary breast cancer is not yet preventable or curable.
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7: Living with and beyond breast cancer
A breast cancer diagnosis is a traumatic experience that affects not only the patient, but also their family, friends and colleagues. While it’s vital to treat the physical symptoms of breast cancer, it’s also essential to ensure a patient’s emotional wellbeing is taken care of to protect their long-term quality of life.
Carly was able to have children after successfully completing treatmentPhoto credit: Charlie Campbell
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To expand our understanding of the needs of people living with and beyond breast cancer, we have invested £2 million in projects looking into this. Among many notable achievements, our researchers have:
• Discovered that there is enormous variation in how DCIS is described by healthcare professionals, leading people to believe it to be anything from a harmless pre-cancerous lump to a life-threatening condition. This research highlighted the need for accurate and consistent information about DCIS.
• Helped inform genetic counsellors of the issues that BRCA mutation carriers may encounter when talking to their children, and the support needs of their partners. These findings are the most comprehensive to date on family communication about hereditary breast cancer.
Where we are now
By 2025, we hope all those diagnosed with breast cancer, and the people close to them, will receive individually tailored information and support to meet their needs, to help them live with and manage the consequences of breast cancer and its treatment.
Little attention given to the emotional needs of the patient or their loved ones throughout their cancer journey.
Little thought given to the wider implications of a breast cancer diagnosis or the long-term physical or emotional side effects of treatment.
We now have:
Research into emotional needs as an internationally recognised field of study, with many experts.
People with breast cancer provided with information about the disease and its treatment, as well as practical, psychological and emotional support.
In the past we had:
2013 2030
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Still so much to do
There are still many things we need to find out if we are to best support people living with the day-to-day impact of breast cancer, including:
• How can lifestyle be improved to aid recovery? To enable people to cope with breast cancer better, we need to find out more about the impact of lifestyle interventions on recovery and better support patients to take their treatments long-term, by embedding this as part of their lifestyle.
• Are different groups affected differently by breast cancer? We need a lot more information about the needs of various groups, such as different ethnic populations, older women and people with additional health problems, to appropriately tailor support to them.
• How can we best support people living with and beyond breast cancer? We need to develop and implement the most effective interventions that help address the impact of breast cancer treatment and psychosocial effects of having had the disease, to best support all those affected.
7: Living with and beyond breast cancer
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Time to accelerate
Our Gap Analysis provides the basis for how we can advance our work in this area, and we’re committed to doing so.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to more than treble our investment to £7 million in research and campaigning over the next ten years to address significant and persistent gaps, in particular around interventions and support to improve survivors’ lives.
• Commission a series of collaborative psychosocial workshops to tackle how best to effectively implement proven intervention programmes. We’ll develop a plan to take the most effective interventions forward, with a view to working with Academic Health Science Centres to implement them in the NHS aftercare system.
• Fund unique research to address some of the difficult emotional issues associated with a breast cancer diagnosis. In particular, research into the most effective way of helping women to cope with hair loss caused by their treatment, research to help prevent long-term insomnia, and research to develop a new mindfulness self-help tool to help women cope with the anxiety of having breast cancer.
• Support the NCRI’s Breast Cancer Clinical Studies Group Working Party on Symptom Management.
We call on:
• NICE to ensure that future reviews of the NICE guideline Early and locally advanced breast cancer: diagnosis and treatment take account of the emerging evidence that a significant proportion of women fail to regularly take their recommended prescriptions following their initial treatment, and reviews should consider what interventions could be put in place to support women to do so.
• NICE and NHS England to collaborate on what activity could be undertaken to ensure compliance with the recommendation in the NICE guideline Early and locally advanced breast cancer: diagnosis and treatment, that patients treated for breast cancer should have an agreed, written care plan, which should be recorded by a named healthcare professional and should include plans for reviewing adjuvant therapy and details of support services.
There are still many things we need to find out if we are to best support people living with the day-to-day impact of breast cancer.
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8: Biobanking and enabling research
Tissue samples are the closest a scientist can get to an actual disease before testing on patients. A huge amount of breast cancer research relies on high-quality tissue samples, whether researching how the different types of breast cancer behave or evaluating the efficacy of new treatments before testing them on people.
A collection of preserved breast tumour samplesPhoto credit: Sam Mellish
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Breast Cancer Campaign has invested £6.5 million in establishing the pioneering Tissue Bank.
• Our original Gap Analysis identified the need for a central tissue resource. The Breast Cancer Campaign Tissue Bank opened to all UK and Ireland researchers in January 2012, and has given breast cancer research a massive boost. The Tissue Bank is vital to research and a major step towards finding cures for all breast cancers.
• We are also collaborating with the Wellcome Trust and others in the medical research community to ensure that the proposed new Data Protection Regulation, replacing the European Data Protection Directive, creates a clear legal framework to facilitate research while protecting the interests of patients.
Where we are now
By 2023, we hope a fully cohesive and collaborative infrastructure to support breast cancer research across the UK will be in place, speeding up the pace of discovery and translation into patient benefit.
A postcode lottery in tissue banking in the UK – access to suitable tissue was affected by a breast cancer researcher’s location and contacts.
Widely varying methods of collecting breast tumour tissue and blood from patients with breast cancer.
No central resource leading the way in breast cancer biobanking.
Thanks to the collaborative efforts of our scientists we now have:
The revolutionary Breast Cancer Campaign Tissue Bank – a unique national resource for researchers in the UK and Ireland, to collect and store tissue samples safely and consistently.
In the past we had:
2013 2030
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Still so much to do
After decades of research, many critical questions remain about breast cancer and how research into the disease can be progressed more quickly, including:
• How does breast cancer really behave in patients? We need to increase our collection and use of human breast cancer tissue and blood samples to investigate this. Samples need to represent more diverse breast cancer subtypes from different ethnic groups, with more sequential samples taken during cancer development and treatment, and collected using standardised methods.
• How can we most effectively analyse information from samples? We need to pioneer new bioinformatics technologies to link molecular data from tissue samples back to patient data about how the disease has progressed, and other types of information such as mammography or PET images, and centralise this information for researchers. Much better integration of computer technology and technical expertise within biological research will be essential to effectively read and translate increasingly complex data.
• How can progress be fostered? We need increased resources to support new technologies as they advance. And we need the many different disciplines involved in research to collaborate more closely to realise discoveries more quickly.
8: Biobanking and enabling research
Tissue stained for review under
a microscopePhoto credit: Sam Mellish
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Time to accelerate
Those working in the cancer research community across the UK and Ireland already regard our Tissue Bank as a major achievement. The challenge now is to sustain this momentum, and to bring together information on the content and access routes for all the other relevant tissue and blood collections across the country to make best use of our collective resources. By addressing the needs of researchers, we can achieve real clinical progress to overcome breast cancer. Breast Cancer Campaign is committed to enabling this to happen.
Everyone must play their part. If we are to find the cures for breast cancer before many more people are diagnosed, we need to work together.
We will:
• Aim to nearly treble our investment in this area to £18 million over the next decade.
• Invest in a significant expansion of our Tissue Bank to address existing gaps in tissue, data, biomarkers and models, to become one of the world’s leading banks for breast cancer-related research materials.
• Map our tissue collection against requirements for biomarkers research and encourage applications to use our tissue samples for biomarker discovery.
• Seek to partner with industry to test new technologies with our material to improve breast cancer models, and use our Tissue Bank to help develop new in vitro models for breast cancer.
• Continue to fund PhD studentships and Scientific Fellowships as well as find new and innovative ways to build the talent pool in breast cancer research, such as working with schools across the country to promote science and breast cancer research, and the vital role it plays in society, to children.
• Pioneer UK-wide breast cancer bioinformatics through the Tissue Bank and share learning around that data. We’ll join forces with other experts in the field to develop training and careers support in bioinformatics and pathology, to ensure we have the scientists of the future to drive scientific progress in these critical areas. Specifically, we’ll work with The Barts Cancer Institute to create a national bioinformatics training programme for breast cancer researchers.
• Support academic pathology, vital to tissue banking, and aim to offer pathologists the opportunity to undertake research by funding pathology research training degrees with Prostate Cancer UK.
We call on:
• The Ministry of Justice, in relation to its activity on the proposed EU Data Protection Regulation, to ensure proposals do not adversely affect either the ability of researchers to access tissue or patients to share their data for research.
• The Department of Health to ensure that its upcoming review of human tissue legislation takes account of rapid innovations in tissue banking. The Health Research Authority may also need to develop methods for streamlining the ethical review of tissue repositories’ collection, storage, use and distribution of human tissue.
• Health Education England, in collaboration with the Higher Education Funding Council for England (HEFCE), to undertake a full audit of the need and current provision of bioinformatics training and for this audit to underpin its training strategy for genomics and bioinformatics.
• The Department for Business, Innovation and Skills and HEFCE to maintain their current commitment to the Charity Research Support Fund in the long-term, including by ensuring appropriate funding is allocated to the Fund so that it keeps pace with the amount of funding charities invest in universities.
After decades of research, many critical questions remain about breast cancer and how research into the disease can be progressed more quickly.
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The time is now We now know what needs to be done to overcome breast cancer. But we can’t do it alone.
We need the Government, academics, clinicians, healthcare professionals, charities, funding bodies, and everyone who cares about putting an end to breast cancer, to work together to fill these critical research gaps.
Over the next decade, we’re going to need at least £100 million to tackle those gaps, and time is pressing on. If we don’t act now, by 2030, more than 1.2 million women could be living with, or after a breast cancer diagnosis and around 185,000 lives could have been lost to the disease.
But that doesn’t have to happen. Help us now, and we’ll find the cures – and overcome breast cancer by 2050.
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Our mission To accelerate progress by bringing together the brightest minds and biggest hearts to drive world-class breast cancer research, influence policy and practice, share knowledge and kick-start innovation.
Our vision A world where breast cancer is overcome and outlived.
About Breast Cancer Campaign
We seek out the best research, bringing the brightest minds together, sharing knowledge to produce better, quicker results to prevent, cure and outlive breast cancer.
Clifton Centre, 110 Clifton Street, London EC2A 4HT
Interested in finding out more? Visit us at www.breastcancercampaign.org Call us on 020 7749 4114 Join the conversation on Twitter and Facebook with #findthecures
Registered charity no. 299758
Acknowledgments
We wish to thank Independent Cancer Patient Voices for providing advice on patient priorities in breast cancer research.
Thanks also go to Alexis Willett for her work in putting together this report.
We would also like to thank our long standing partner Asda, whose generous support through Tickled Pink has made this publication possible.
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