Secondary Breast Cancer Awareness Day – A case for change for incurable breast cancer

Secondary breast cancer is often overlooked, including during Breast Cancer Awareness Month in October. There remains confusion over what “secondary” breast cancer means and there are many misconceptions that women and men living with the disease hear daily – that if they’ve finished treatment they must be better, they can’t have cancer because they look so well, or that they know how long they will have with family and friends.

Secondary breast cancer is when breast cancer cells have spread to another part of the body – most commonly the liver, lungs, bones or brain. While it can be treated, it cannot be cured. Women and men with secondary breast cancer lead their lives from appointment to appointment and scan to scan. They don’t know how many birthdays, celebrations or anniversaries they have left. They wonder whether they’ll be able to go on another holiday or when their drugs will stop working.

Over the last year Breast Cancer Care’s Secondary. Not Second Rate campaign has delved into the reality of what it’s like to live with incurable secondary breast cancer in England, Scotland and Wales today. When they already face so much uncertainty, one thing people with secondary breast cancer should be able to count on is getting the care and support they need, when they need it. However, we found far too many face delays in diagnosis, a lack of vital specialist nursing care and are poorly informed about available support – this is not good enough.

Breast Cancer Care started campaigning on this issue over 10 years ago. Despite commitments made by governments to improve standards of care for women and men living with secondary breast cancer the startling results from our current campaign make it clear that there has been little progress and problems of inadequate care still must be tackled.

Close to half (42%) of NHS Trusts and Health Boards we surveyed do not provide specialist nursing care for people with secondary breast cancer, in stark comparison to the overwhelming majority (95%) of people with primary breast cancer having a named clinical nurse specialist for support. It is outrageous that even though specialist nursing can dramatically improve quality of life for women and men with incurable secondary breast cancer, so many do not have a nurse they can count on for this essential support.

There are an estimated 36,000 people living with secondary breast cancer in the UK, but shockingly we still don’t know the exact figure. Though mandatory since 2013, we found a fifth (19%) of Hospital Trusts in England are not collecting any data about the number of people diagnosed with incurable breast cancer and almost half (47%) are not recording the numbers fully.

It is hardly surprising that so many Hospital Trusts and Health Boards find it difficult to meet the needs of people living with secondary breast cancer when they do not know the number of people with the disease who need care and treatment in their area. Breast Cancer Care believes the alarming absence of accurate numbers is a major barrier to the urgently needed improvements to care.

Women and men living with secondary breast cancer feel forgotten and invisible and the care they receive is often inferior to the care that is greatly valued by people treated for primary breast cancer. They cannot and should not have to wait a day longer for things to improve.

Breast Cancer Care is calling on the Government and the NHS to ensure that everyone living with incurable secondary breast cancer gets the care and support they need. Join us and show your support, visit breastcancercare.org.uk/secondary

Words Gunes Kalkan, Head of Policy and Campaigns at Breast Cancer Care

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