14 July 2016
Breast Cancer Care’s new report on diagnosis for people with incurable, secondary breast cancer exposes shocking failings – patients being diagnosed in A&E, facing avoidable delays and having concerns ignored by healthcare professionals.
The charity warns this could mean thousands of patients with incurable breast cancer across England, Scotland and Wales are receiving second-rate care.
The report reveals that nearly a tenth of people (8%) with incurable breast cancer are diagnosed in A&E rather than a breast clinic. This suggests some people are left struggling with uncontrolled symptoms that become so debilitating they are rushed to hospital. And a diagnosis in A&E is given by on-call staff, not a breast cancer specialist, with no dedicated support available.
In addition, a fifth (20%) of people with incurable breast cancer say despite thinking something might be wrong, it is eight weeks or more before they see a hospital doctor. This further indicates symptoms that are ‘red flags’ for the disease are not being acted on appropriately. And by leaving the cancer untreated for longer, symptoms can worsen and it could continue to spread.
The survey, one of the largest of its kind, also shows that almost a third (31%) of people with incurable breast cancer do not feel healthcare professionals listen to their concerns about having the disease. This can leave patients struggling to be taken seriously and get the treatment they desperately need.
And almost half (49%) of people surveyed said when given the news they have incurable breast cancer they were not advised to bring someone with them, which can cause distress.
Other findings from the survey include:
- Over half (58%) of people with incurable breast cancer did not know how to spot the signs and symptoms of the disease.
- Just over a fifth (21%) of people who previously had breast cancer are first treated by their GP for another condition.
As a result, Breast Cancer Care believes huge numbers of people with incurable breast cancer are being failed every step of the way.
Mum-of-one Emma Cairns, 43, from Wokingham, was diagnosed with secondary breast cancer in 2011. She says:
“I started getting really bad back ache about four years after my primary breast cancer. Tests at my GP came back ok and I was told to get on with things. But the pain continued to get worse. After going back and forth and even with three months of physiotherapy, it wasn’t any better. I still didn’t get an MRI scan.
“A year and a half later I could barely walk. Finally an MRI was arranged and I was still reassured it was probably nothing. Then, after the scan I was told I had incurable breast cancer. Not only that, I had three collapsed vertebrae and the cancer was in my pelvis and liver. I was distraught.
“I’d been made to feel I was making a fuss about nothing and now I was facing my worst nightmare. Living in excruciating pain with poor mobility had put my life on hold, including being a mum – and an early diagnosis could have got things under control so much quicker.”
Samia al Qadhi, Chief Executive of Breast Cancer Care, says:
“Today’s report paints an extremely worrying picture. Our findings uncover the true extent of inadequate care for people with incurable breast cancer - from feeling they’re not taken seriously when they raise concerns, to facing avoidable delays to a diagnosis, or being told the news in A&E. This is absolutely unacceptable.
“Prompt diagnosis is crucial to help control severe symptoms and allow people with incurable breast cancer to make every day count – as a mum or grandmother, at work, and when making memories with friends. Yet, for so many this is not happening.
“Breast cancer is not fixed, there is much more to do. We are calling on governments to ensure incurable breast cancer gets the attention it deserves. Only then can we make these appalling gaps in care a thing of the past.”
The charity is launching a year-long Secondary. Not second rate. campaign to tackle the gaps in care and is calling on governments to:
- ensure GPs have the information they need to enable a prompt diagnosis of incurable breast cancer
- ensure data is routinely and consistently collected to give commissioners the information they need to effectively plan services
- ensure all patients have timely access to specialist palliative care services.
The first in a series of Breast Cancer Care reports is available at breastcancercare.org.uk/secondary
Mum-of-three Claire McDonnell, 43 from Reading, was diagnosed with secondary breast cancer in November 2013. She says:
“I wasn’t told anything about looking out for signs and symptoms of the cancer returning after my primary breast cancer diagnosis. I didn’t know bone pain could be a warning sign. And when I started getting a stabbing pain in my sternum I went to my GP and was prescribed painkillers.
“After a year I went to see my oncologist. I thought tests would rule out anything serious. Instead I was told my cancer was back, had spread around my body and was incurable. There was little support and I was in total shock. It was devastating to think it could have been spotted earlier.
“A quick diagnosis would have helped me start treatment sooner to try and slow the cancer down and treat my constant pain. And not knowing what was wrong for so long was really tough. My number one priority now is having as much time with my family as possible.”
Jade Braithwaite, 25 from Lancashire, helped care for her mum, Gail, when she was diagnosed with secondary breast cancer in 2014. Gail died that same year. Jade says:
“We first thought something was wrong when mum started getting really tired at work. Then one day she came home in agony and couldn’t move because the pain was taking her breath away. We rushed her to the doctors and were told it was probably gall stones.
“This was the first of many tests. I was worried because mum had had breast cancer before. But there didn’t seem to be a sense of urgency, so I thought everything would be ok. Five weeks later mum finally had a CT scan and we were shown a shadow on her liver, which meant more tests. There were still no answers.
“Almost a whole month later I was told mum had secondary, incurable, breast cancer. She was so ill by this point I became her carer. And when she died I didn’t know how to feel - it had always been just me and my mum. She’s still always on my mind. I wouldn’t want anyone to face the anxiety, delays and confusion we did.”
For further information, please contact:
Sophie Softley Pierce, PR Officer, Breast Cancer Care
020 7960 3505 (out of hours 07702 901 334)
Notes to editors
Figures from a Breast Cancer Care survey by Quality Health. Fieldwork was undertaken between 7 March and 31 May 2016. Total sample size: 841 people with incurable breast cancer.
All percentages calculated by Quality Health and rounded to the nearest whole number, for more information please contact Sophie Softley Pierce.
The survey was shared with respondents to the National Cancer Patients Experience Survey (CPES) in England who had agreed to receive further questionnaires about their health. It was also shared online using Facebook and Twitter, targeted email communications to those using Breast Cancer Care’s secondary breast cancer services and the charity’s campaigns community.
Total sample size for individual questions may vary due to people answering specific questions according to their personal experience.
About Breast Cancer Care
When you have breast cancer, everything changes. Time becomes measured in appointments. The next scan. The next results. The next challenge.
At Breast Cancer Care, we understand the emotions, challenges and decisions you face every day. So, from the day you notice something’s not right to the day you begin to move forward, we’ll be here to help you through.
Whether you want to speak to our nurses, download our specialist information or connect with volunteers who have faced what you are facing now, we can help you feel more in control.
For care, support and information from day one, call our nurses free on 0808 800 6000 or visit breastcancercare.org.uk