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 cancer, 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 new campaign calling for greater recognition of the estimated 35,000 UK people living with incurable secondary breast cancer 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”.

Early diagnosis of secondary breast cancer is critical

Breast cancer is the UK’s most common cancer, with around 55,000 women and 370 men being diagnosed each year. 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 year.

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 diagnosed ― and for thousands more it can return around the body years later.

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.

What are the symptoms of secondary breast cancer?

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.

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."