11 October 2019

 

  • Landmark UK survey finds nearly one in four patients who saw their breast cancer return and spread after treatment had to visit their GP three or more times before eventual diagnosis
  • Just 13% of women who saw their cancer return and spread were given enough information about the signs and symptoms of incurable secondary breast cancer at the end of initial treatment
  • Breast Cancer Now launches bold campaign, ‘The Unsurvivors’, calling for better support for GPs such as online training and for alerts of the red-flag symptoms of secondary breast cancer to be included and used in all GPs’ IT software, while challenging the “worrying” perception that everyone survives breast cancer

Thousands of women are experiencing ‘avoidable’ delays in being diagnosed with the return and spread of breast cancer, a new report by Breast Cancer Now suggests.

In the largest ever UK survey of people living with incurable secondary breast cancer1, nearly one in four (24%) respondents who had previously been treated for breast cancer had to visit their GP three or more times with symptoms before being diagnosed with the return and spread of the disease.

In addition, four in ten (41%) respondents who had spoken to a healthcare professional before being diagnosed with secondary breast cancer said they felt that their symptoms had not been taken seriously.

If left untreated, secondary breast cancer continues to spread and symptoms are likely to worsen and have a greater impact on daily life. While there is insufficient evidence to show whether delays in diagnosis may significantly shorten patients’ lives, early diagnosis and timely access to treatment and support can help alleviate symptoms and have a dramatic impact on quality of life.

Breast Cancer Now today called for better support for GPs such as online training and for alerts of the red-flag symptoms of secondary breast cancer to be included and used in all GPs’ IT software ― as well as for all primary breast cancer patients to be given full information on the signs of secondary breast cancer as part of follow-up support after treatment ― to help ensure everyone receives a prompt diagnosis.

The findings come as the charity launches ‘The Unsurvivors’, a bold new campaign calling for greater recognition of the estimated 35,000 UK people living with incurable secondary breast cancer2 and for a step-change in their diagnosis, treatment and care.

The charity said the campaign aimed to challenge the “worrying perception that everyone survives breast cancer” which fails to recognise “the heart-breaking reality for 11,500 families in the UK each year”.

Breast cancer is the UK’s most common cancer, with around 55,000 women and 370 men being diagnosed each year3. While more women than ever are surviving the disease thanks to decades of progress, NHS investment, and increased charity support funded by the public, around 11,500 still die in the UK each year4.

Almost all of these deaths are attributable to secondary breast cancer, where breast cancer spreads to another part of the body, such as the bones, liver, lungs, skin or brain. While secondary (also known as ‘metastatic’) breast cancer can be treated and controlled for some time to help patients live well for as long as possible, it remains incurable and patients stay in treatment for the rest of their lives.

In around 5% of the 55,000 new cases of breast cancer each year, the disease has already spread by the time it is diagnosed5 ― and for thousands more it can return around the body years later6.

Early diagnosis can be critical in ensuring patients can begin treatment, and receive the care and support they need, as soon as possible. But, in a landmark new survey of over 2,102 people with secondary breast cancer, many were found to have experienced delays in diagnosis amid continued challenges for healthcare professionals in recognising the signs and symptoms.

In particular, among women who had previously been treated for primary breast cancer, nearly one in four (24%) had visited their GP three or more times with symptoms before being diagnosed with the return and spread of the disease.

In addition to delays in being referred by a GP for appropriate investigations, the time taken to diagnose secondary breast cancer may also be affected by the fact that many people who have had primary breast cancer are not aware of potential symptoms to check with their GP or treatment team.

Worryingly, among respondents who had had a prior diagnosis of breast cancer (1,463 of 2,102 women), just 13% said they had been given enough information about the potential signs and symptoms of the return and spread of the disease to look out for after their initial treatment.

There are many different symptoms of secondary breast cancer, which can vary depending on where the cancer has spread to. Common signs and symptoms include:

  • unexpected weight loss or loss of appetite
  • discomfort or swelling under the ribs or across the upper abdomen
  • severe or ongoing headaches
  • altered vision or speech
  • feeling sick most of the time
  • breathlessness or a dry cough
  • loss of balance or weakness or numbness of the limbs
  • any lumps or swellings under the arm, breastbone or collarbone
  • pain in the bones (e.g. back, hips or ribs) that doesn’t get better with pain relief and may be worse at night

Whilst many of these symptoms can have other causes, for example aches and pains in the bones can be due to ageing, arthritis or side effects of treatment for primary breast cancer, Breast Cancer Now said that patients should be encouraged to report any new and persistent symptoms so they can be assessed appropriately.

The charity’s survey also found that among respondents who had visited their GP having previously been treated for breast cancer, 20% were treated for another health condition by their GP before eventually being diagnosed with secondary breast cancer.

Alongside calling for new tools and resources for GPs, Breast Cancer Now has today urged that, in people who have previously been treated for primary breast cancer, non-specific but persistent symptoms must be investigated and taken seriously.

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, the research and care charity, said:

It’s completely unacceptable that thousands of women may be experiencing avoidable delays in being diagnosed with the return and spread of their breast cancer. There is unfortunately no surviving a diagnosis of secondary breast cancer, and significant delays in patients getting the treatment and support they need can have a devastating impact.

It’s absolutely vital we do all we can to ensure people get the appropriate diagnosis and support they need sooner. It is clear we need to provide better support to GPs and do much more to raise awareness of what secondary breast cancer is.

But we also need to see a radical shift in how we think about breast cancer. We need health services to properly cater for the tens of thousands of people living with breast cancer where treatment is no longer curative. We need to guard against complacency in the face of recent advances, and ensure that clear pathways are developed for secondary breast cancer patients, from diagnosis through to care. We cannot let those with secondary breast cancer be written off. For too long now, the worrying perception that everyone survives breast cancer has masked the heart-breaking reality for 11,500 families in the UK that lose someone they love each year.

Early diagnosis is at the heart of NHS cancer policy, but we are not yet doing enough to ensure the same prompt diagnosis for secondary breast cancer patients. By providing better support for GPs and ensuring that all patients treated for primary breast cancer receive the support and information they need about what to look out for, we can help more people live well for as long as possible.

While the progress of the last thirty years should be celebrated, breast cancer is far from done and we cannot ignore the huge amount of pain and uncertainty this disease continues to cause. We need to start talking openly about people dying from breast cancer because it is happening every 45 minutes in the UK. We need to see a step-change in the diagnosis, treatment and care of secondary breast cancer. We need to act now.”

Miranda Ashitey, 36, from London, was diagnosed with secondary breast cancer in February 2019, five years after her diagnosis of primary breast cancer, after visiting her GP with a persistent cough. She said: 

After my primary breast cancer treatment ended, I was barely given any information about the possibility of the cancer returning or spreading and there was nothing about what signs and symptoms to look out for. So, when I developed a very persistent cough almost a year ago, I thought it was simply related to the time of year and didn’t think anything of it. It wasn’t until I was back at work two months later, after New Year, that I went to see my GP who prescribed me antibiotics.

I started feeling really ill not long after taking the antibiotics – my appetite disappeared, I couldn’t work and I didn’t even have the energy to go to my GP for an emergency appointment. A few days after starting the treatment, I ended up calling 111 who sent an ambulance to take me to A&E. Tests found fluid in my heart and lungs, and I was told it could either be tuberculosis, pneumonia or that the cancer had come back. I had to wait over the weekend for the results and, after nearly a week in hospital, I was told the cancer had spread to my lungs and liver.

It was such a big shock as I wasn’t aware of the symptoms, and a routine scan in December raised no concerns. Now it feels as though I’m living on borrowed time. I’m constantly aware that, once my drugs stop working, what happens next could happen really quickly. I’m never going to be the same age as my mum, never draw a pension, and never see my nieces grow up. After a primary diagnosis, it’s so important that women are made aware cancer can return and spread, as well as the signs and symptoms to look out for – secondary breast cancer is a reality for thousands.

Jo Myatt, 44 from Chorley, was diagnosed with incurable secondary breast cancer in August 2016, 10 years after her primary breast cancer diagnosis, following a number of visits to her GP over three years. She said:

I sought advice from my doctor as I was experiencing a range of issues including nausea, acute indigestion, and fatigue. However, it took at least five appointments with my GP before a blood test was arranged. Over these three years, I also saw a number of different specialists about these symptoms. When the blood test showed my liver function to be abnormal, I now know that this symptom should have been flagged as I’d had breast cancer before. Instead I was asked questions like, ‘do you drink a lot’? I was then sent away for six weeks.

Over time, I became increasingly anxious – my mood was low, I wasn’t sleeping and saw my family and friends less and less. However, I put all of my symptoms down to work-related stress. I’d been attending my annual mammograms and six monthly check-ups, but my cancer didn’t return in my breast area and no-one told me that there were other changes to be aware of.

By the time the cancer was found, it had spread significantly and was incurable. There were extensive tumours in my bones and liver, which had now started to fail. Had my secondary breast cancer been diagnosed sooner, I could have been able to access less invasive treatments and have more options, improving the quality of my life and potentially even extending it.

Throughout this ordeal, I was made to feel like a hypochondriac. I strongly urge other women previously diagnosed with primary breast cancer not to be frightened about asking for second and third opinions if you have any symptoms you are worried about that are not adequately addressed.

Joy Knott, 59, a mum-of-three from Coventry, was diagnosed with secondary breast cancer in August 2011, over 12 years after her primary diagnosis. She said:

When I started having asthma type symptoms and they progressively got worse I went to my GP, but wasn’t initially overly concerned as I’d had a history of chest problems growing up. But then I started experiencing bad chest infections and breathing difficulties, which meant I was struggling to project my voice while teaching.

I went back to my GP and after months of appointments and prescriptions for different antibiotics and inhalers with no improvement, I was eventually referred to a respiratory specialist. By this time, I was off work and bed bound with yet another bad chest infection.

When an x-ray revealed my lung was partially collapsed, I asked my hospital team whether it could be because of a cancerous tumour. They didn’t confirm that this could be the cause but just booked me in for more tests. I had to endure many complicated procedures before they finally told me I had secondary breast cancer and it was incurable. By this time I had put two-and-two together, after researching my symptoms online.

At no point in the year it took me to be diagnosed did anyone mention a possible link between my symptoms and my breast cancer having spread. If I’d known that breathlessness and a persistent cough could be signs of secondary breast cancer, I would have pushed my doctors more. The avoidable delays I faced are incredibly frustrating. I should have been better informed.

Catherine Priestley, Secondary Breast Cancer Nurse Specialist at Breast Cancer Now, the research and care charity, said:

Delays in diagnosing secondary breast cancer can see people go weeks and months without access to the crucial support they need to help treat and manage their symptoms.

“If left untreated, the disease can spread further and symptoms can begin to have a big impact on daily life, for example pain may become severe enough to reduce people’s mobility, capacity to work or care for their children. Having unexplained symptoms causes significant worry, and when they are not treated or taken seriously the psychological impact for patients and their families can be huge.

We need to raise awareness of the signs and symptoms of secondary breast cancer among those with a history of breast cancer, but it’s essential this is matched with practical and emotional support – as, for many, the fear of the disease coming back or spreading can have a major effect on their life and mental health.

While most aches, pains or coughs won’t mean the cancer is back, we’d encourage everyone who has previously had breast cancer to report any new, unexplained or persistent changes to their GP or specialist team. For any additional support or information, anyone can call our free Helpline on 0800 800 6000 – our nurses are just at the end of the phone.

Breast Cancer Now’s survey also highlighted that:

  • Just 73% of respondents had been given the name of a Clinical Nurse Specialist (CNS) at their diagnosis, with only 30% seeing a CNS regularly
  • Nearly one in six (16%) respondents said they didn’t feel confident they would have access to the most appropriate drugs treatments for them in the future
  • 23% of respondents had discussed taking part in a specific clinical trial with a healthcare professional

The charity’s dedicated campaign ‘The Unsurvivors’ launches today, calling for urgent change to ensure the right support, treatment and care is available to women diagnosed with secondary breast cancer. Their campaign report sets out 11 key recommendations, including calling on:

  • The NHS in all UK nations to develop tools and resources to help GPs recognise cases of secondary breast cancer and to ensure all primary breast cancer patients are provided with information on the signs and symptoms of secondary breast cancer, at a time and in a manner that suits them, as part of their follow-up support after treatment
  • All UK Governments to review and publish a breakdown of the current number of full-time equivalent Clinical Nurse Specialist posts to support people with secondary breast cancer, and to take urgent action to address the shortfall in specialist nurses, including providing the investment needed to recruit and train new nurses, to ensure everyone with secondary breast cancer is supported by a Clinical Nurse Specialist
  • All UK Governments, the NHS, the pharmaceutical industry, the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to work together, alongside Breast Cancer Now, to ensure new treatments can reach secondary breast cancer patients quickly, at a price the NHS can afford
  • NHS bodies across the UK to provide appropriate support for patients, clinicians and local systems to ensure everyone with secondary breast cancer has sufficient information about clinical trials

To sign The Unsurvivors petition, visit breastcancernow.org/unsurvivors