As October is Breast Cancer Awareness Month we have decided to close this month with a blog from Danni Manzi, Head of Policy and Campaigns at Breast Cancer Care. In this blog, Danni talks about the importance of raising awareness of incurable cancer related diseases such as secondary breast cancer and how Breast Cancer Care are using their 'bucket list campaign' to achieve this.
October is a big month in any year for those living with, or affected by, breast cancer. It’s Breast Cancer Awareness Month (BCAM) and for over 55,000 people who are diagnosed with breast cancer every year, it provides an opportunity for many, including Breast Cancer Care, to raise awareness of the impact breast cancer has on those diagnosed, their family and friends.
However, while raising awareness of breast cancer is incredibly, vitally important, those living with incurable secondary breast cancer feel as if BCAM tends to focus on the prevention, early diagnosis and survivorship agendas, adding to the misconception that breast cancer is ‘solved’. There are approximately 36,000 people living with secondary breast cancer in the UK and every year, around 11,700 people die as a result of the disease. Secondary breast cancer - also known as metastatic, advanced or stage four breast cancer – is where breast cancer cells have spread from the breast to other parts of the body, most commonly to the bones, lungs, liver and brain. It is incurable but treatable. On average, people live with the disease for two to three years after diagnosis. However, this can vary considerably from person to person, with some only living for months after diagnosis, while others live for many years longer.
Ismena Clout, a long term supporter of Breast Cancer Care, who died of secondary breast cancer in 2014 said: “Secondary breast cancer is like the forgotten part of the disease. The focus is overwhelmingly centred on primary breast cancer and secondary with end stages and dying, is largely unspoken about.”
So with this in mind, over the last few years, Breast Cancer Care has worked hard to ensure that there’s a strong focus on the needs of those living with incurable disease.
This year, as part of BCAM, and in the run up to Secondary Breast Cancer Awareness Day on Tuesday 13 October, we launched our 'bucket list campaign'. The campaign aimed to raise awareness of the disease and where care needs to be improved. It asked people to consider what would be on their bucket list if they were diagnosed with an incurable condition, such as secondary breast cancer.
Breast Cancer Care has its own bucket list for secondary breast cancer, with five things that need to happen to improve care:
1. No-one living in unnecessary pain
Pain is the most common symptom but too few people are being referred to palliative care services for symptom control and pain management. Everyone should be referred to palliative care at the point of diagnosis.
2. Everyone having access to the treatments they need
Some people are being denied access to clinically effective drugs because they are not available through NICE or the Cancer Drugs Fund. The whole system of treatments and drug appraisal should be reformed to make sure patients can receive life-lengthening treatments.
3. All patients have a clinical nurse specialist as part of their care
A secondary breast cancer patient is far less likely to have access to a clinical nurse specialist (CNS) than a primary breast cancer patient. A CNS can provide invaluable support and help guide patients through the health system. Everyone should have a CNS involved in their care.
4. Hospitals are able to plan services to meet their patients’ needs
There is currently no robust data collection of secondary breast cancer taking place. This means that commissioners are not able to understand their patients’ needs and plan services to meet these needs.
5. Everyone’s care is co-ordinated and joined up
Multi-disciplinary teams (MDTs) are not consistently discussing secondary breast cancer patients, missing a clear opportunity to ensure patients are receiving the best possible integrated care.
At party conferences, we turned our bucket list into an interactive exhibition stand, featuring the stories of five women living with secondary breast cancer. Some of these women came with us to the Labour, Conservative and SNP conferences. Such was the power of their impact that two of our volunteer campaigners, Emma and Frances, were invited to a private meeting with the leader of the Labour Party, Jeremy Corbyn, while another, Dee, got to speak to Prime Minister, David Cameron about what it’s like living with the disease.
After attending three party conferences, meeting with four party leaders, receiving support from many MPs, having a parliamentary debate dedicated to secondary breast cancer and being included in Prime Minister's Questions, it's safe to say we've pushed secondary breast cancer well and truly up the agenda.
But we’ve got a long way to go yet. The underlying problem to much of this is that we still don’t know how many people have been diagnosed, or are living, with secondary breast cancer. 36,000 is a commonly used statistic but only an estimate. Not only does the lack of data leave us unclear about the real outcomes of treatments for primary breast cancer, we remain in the dark when it comes to understanding the true impact of secondary breast cancer. We don’t know enough about the types of treatments patients are receiving or how the quality of a patient’s life changes over time.
Despite ongoing lobbying, the lack of progress on this issue is woefully slow, leaving us with huge gaps in our knowledge and making it virtually impossible for commissioners to be able to properly plan and commission services that can truly meet patient needs. How can we evidence the need for a secondary breast care nurse if hospital trusts have no idea of a nurse’s potential caseload?
If we really want the UK to be one of the best countries in Europe for cancer care, then it is the fundamental and intrinsically important issue of data that must be addressed for secondary breast cancer, and as a matter of urgency. For many of the women we support, we don’t have the luxury of time.
Read the Department of Health's reponse to Breast Cancer Care's bucket list campaign here.