1. About secondary breast cancer
2. Our approach to stopping women with secondary breast cancer dying and helping them live well
3. How we are stopping women with secondary breast cancer dying and helping them live well
4. Our research
5. Our information and support
6. What we spend on secondary breast cancer research.
7. The impact of our work for people affected by secondary breast cancer
8. Our research impact
9. Our information and support impact
10. Our influencing and campaigning impact
11. Why we need your help to stop women dying from secondary breast cancer

 

1. About secondary breast cancer

Secondary breast cancer is where the cancer has spread from the breast to other parts of the body. You might hear secondary breast cancer being called by many names – metastatic, advanced or stage 4 breast cancer – and they all mean the same thing.

Most commonly, breast cancer cells spread to the bones, liver, lung or brain. While secondary breast cancer can be treated, it cannot be cured. The aim of treatment for secondary breast cancer is to control and slow down the spread of the cancer, relieve symptoms, maintain health and wellbeing and give you the best quality of life for as long as possible.

Secondary breast cancer is not the same as breast cancer recurrence, where the disease comes back after treatment but may not have spread to other parts of the body.

 

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2. Our approach to stopping women with secondary breast cancer dying and helping them live well

As the UK’s first comprehensive breast cancer charity, we’re here to provide support for today and hope for the future for everyone affected by secondary breast cancer.

We provide support through a range of services and information available online, over the phone, and face to face including our Living with Secondary Breast Cancer sessions. We fund the highest quality research to find out why breast cancer spreads, how we can prevent it, and how to treat it when it does, and campaign to make sure that women with secondary breast cancer receive the best possible treatment, services, support and care.

Our research projects are looking at different aspects of secondary breast cancer – from finding ways to stop breast cancer spreading to finding more effective ways to treat it. In addition we are trying to find new ways to diagnose it earlier, develop more effective and kinder treatments for primary breast cancer that could reduce the chance of it spreading, and ensure everyone receives the most suitable treatment for them. A lot of the research we fund we hope could lead to new treatments that women with secondary breast cancer could benefit from.  

 

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3. How we are stopping women with secondary breast cancer dying and helping them live well

As the UK’s first comprehensive breast cancer charity, we fund world-class research, we provide expert information and support, and we create change for people affected by breast cancer.

 

 

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4. Our Research

Our research into secondary breast cancer covers many different topics, from understanding how secondary breast cancer develops and looking for ways to prevent it, to finding better treatments and better ways to support people with the disease. 

For example, Professor Clare Isacke is discovering how breast cancer cells escape from the breast tumour, enter the blood stream and manage to seed new tumours in places such as the bone, lungs and brain.  Professor Robert Clarke is trying to find ways to prevent or control breast cancer that has spread to the bones. Professor Nicola Sibson is trying to find new treatment options for secondary breast cancer in the brain. Professor Gary Cook is trying to develop a new way to tell, at an early stage, whether a treatment is successfully controlling secondary breast cancer in the bone. And Dr Fiona Kennedy is assessing an online support service for secondary breast cancer patients.

You can see the list of our research projects into secondary breast cancer on our website, however the list does not include projects that have not yet been publicly announced.

 

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5. Our information and support

We have award-winning information and resources on secondary breast cancer, produced by experts working together with secondary breast cancer patients. They are available to read online, to download or to order in print free of charge.  The information is regularly reviewed and updated to reflect any changes in clinical practice and to make sure it addresses patients’ needs.

We also offer face-to-face services tailored for people living with secondary breast cancer. We currently run Living with Secondary Breast Cancer groups in 38 locations across the UK. The groups are held monthly and offer the chance to meet and share experiences with other people living with a secondary diagnosis. We also run two residential events a year for women aged 45 and under who are living with secondary breast cancer. Our Younger Women with Secondaries Together events offer two days of information, support and sharing with around 40 women in a similar position. We also offer our online Live Chat service, as sometimes it’s not easy to get face-to-face support. Live Chat is a private chat session for people living with secondary breast cancer held weekly every Tuesday 8:30-9:30pm.

Our nurses provide help and support to anyone affected by or concerned about breast cancer, including people with secondary, via Helpline or email. And we have the Forum for you to ask questions and get the support you need.

Through our Service Pledge, we work with breast cancer patients, affected by both primary and secondary disease, healthcare professionals and Cancer Alliances to design and deliver a concrete action plan to improve breast care service around the country.

 

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6. What we spend on secondary breast cancer research

Currently, all our active research projects put together are worth just over £26 million. We invest most into research aimed at stopping deaths from breast cancer. Right now, it makes up 73% of our research investment, with around 14% of our investment going to prevention and around 13% going to research that will help us understand, minimise or manage long-term consequences of breast cancer treatments.

Looking specifically at our current investment in secondary breast cancer research, it constitutes 19% of our total research investment. It’s not an annual spend figure, but reflects how much all our active research projects investigating secondary breast are worth. This figure can go up and down depending on when different research projects start and end throughout a year. These research projects are looking at different aspects of secondary breast cancer – from finding ways to stop breast cancer spreading to finding more effective ways of treating it.

However, it doesn’t reflect all research projects that could help us stop women dying from breast cancer. Finding ways to diagnose the disease earlier, developing more effective and kinder treatments for primary breast cancer that could reduce the chance of it spreading, and ensuring everyone receives the most suitable treatment are equally important. This figure also doesn’t reflect all the research we fund that we hope could lead to new treatments that women with secondary breast cancer could benefit from, as it only covers treatments specifically designed for secondary breast cancer.

 We spend more on our secondary breast cancer research than our prevention or early detection of breast cancer research.

 

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7. The impact of our work for people affected by secondary breast cancer

Everything we do has patients at the heart. Research holds the key to finding better ways to detect, prevent and treat breast cancer.  And through connecting people to a network of support as they live with the devastating long-term impacts of breast cancer, we’re aiming to ensure that, by 2050, everyone who develops breast cancer will live and be supported to live well.

 

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8. Our research impact

Our researchers at the Breast Cancer Now Toby Robins Research Centre at The Institute of Cancer Research in London have contributed to the development of PARP inhibitors, a new class of drugs that target cancers with mutations in BRCA1 and BRCA2 genes. PARP inhibitors, such as olaparib, are already used to treat secondary triple negative breast cancer with such mutations in the USA and we hope will soon reach patients in the UK and Ireland.

Our researchers have also discovered that a lung cancer drug crizotinib could work well to treat around 90% of lobular breast cancers. They are currently running a clinical trial ROLO for patients with secondary lobular breast cancer.

 And you can read more about our research achievements aimed at stopping deaths from breast cancer here.

 

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9. Our information and support impact

Last year alone,831 women attended our Living with Secondary Breast Cancer sessions, and 77 women under the age of 45 attended our Younger Women with Secondaries Together events. Between January and March alone, we provided almost 11,000 hours of face-to-face support to women with secondary breast cancer.

We have developed information pages to match the availability of new secondary breast cancer drugs, such as abemaciclib and trastuzumab emtansine. And last year almost 200,000 copies of our information resources for secondary breast cancer were distributed or downloaded.

Since 2013, through our Service Pledge, we have worked with 32 hospitals to improve standards of care for people diagnosed with secondary breast cancer. This has resulted in over 170 improvements, engaging over 3,000 patients and working with over 60 patient representatives.

 

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10. Our influencing and campaigning impact

We have been campaigning to improve support and care for people with secondary breast cancer since 2006, when we set up and coordinated the Secondary Breast Cancer Taskforce, which identified gaps in treatment, care and support for people living with the disease.

Our ‘Secondary. Not Second Rate’ campaign highlighted issues in diagnosis, data collection, support services and nursing care. This campaign lead to significant improvements to how data on secondary breast cancer is collected and recorded by NHS Trusts in England. It has also resulted in progress in Wales and Scotland.  The Welsh Government has now established a Task and Finish group to assess the need for secondary breast cancer nurses and the Scottish Government is producing recommendations to improve secondary breast cancer services.

We have also successfully campaigned to help ensure that certain secondary breast cancer treatments were made available to patients across the UK, at prices the NHS could afford. For example, following our ‘Keep Kadcyla’ campaign the ground-breaking drug trastuzumab emtansine (Kadcyla) became available on the NHS to those who need it, and following our ‘Perjeta Now’ campaign the treatment pertuzumab (Perjeta) became available in Scotland. 

A variety of campaigns, such as ‘55,000 Reasons’ and ‘Secondary. Not Second Rate', have called for all people living with secondary breast cancer to have access to a specialist nurse, to help them navigate the complexities of the disease. As a result, we secured a commitment in the NHS Long-Term Plan that all patients, including those with secondary cancers, will have access to the right expertise and support, including a Clinical Nurse Specialist or other support worker. We are now calling on the Government to urgently implement this.

 

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11. Why we need your help to stop women dying from secondary breast cancer

We need to develop new treatments to give people affected by secondary breast cancer more time to live, and live well. We want to find new ways to detect and diagnose secondary breast cancer earlier, that can help guide treatment decisions so that everyone receives the care most suitable for them. And we want ways to prevent secondary breast cancer developing in the first place.

Every pound, every hour, every action will help us to get there. You can donate, take on a sports challenge, volunteer with us, do your own fundraising or campaign with us. 

Donate

 

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