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'Unsurvivors': Improving the diagnosis, treatment and care of people with secondary breast cancer

Posted: 18/02/2020

Charity Breast Cancer Now recently launched its ‘Unsurvivors’ campaign, calling for changes to improve the diagnosis, treatment and care of people with secondary breast cancer (cancer that has spread from the breast to other parts of the body, also known as stage IV or metastatic cancer).

Part of the campaign was to challenge what it describes as ‘the worrying perception that everyone survives breast cancer’. In fact, every year there are over 55,000 new cases of breast cancer and 11,400 deaths. Cancer Research UK reports that survival is dependent on the type and stage of cancer, the person’s level of fitness and previous treatment. It reports five year survival rates for 99% of those diagnosed with stage I breast cancer (early stage, small localised tumour); 80% for stage II (early stage, larger tumour but still localised); 60% for stage III (spread into surrounding tissues) and only 15% for secondary, or stage IV, cancer.

The campaign followed a survey commissioned by the charity of over 2,100 people with secondary breast cancer, which highlights avoidable delays that many people experience in getting a diagnosis and accessing appropriate treatment.

The respondents included 1,463 women who had previously been treated for breast cancer. It is particularly concerning to find in this group of high risk patients that:

  • only 13% said they had been given enough information about the potential signs and symptoms of the return and spread of the disease;
  • 24% had to visit their GP three or more times with symptoms before being diagnosed;
  • 20% were treated for another health condition before eventually being accurately diagnosed; and
  • 6% were only diagnosed after being seen as an emergency in A&E.

What is causing these delays?

Diagnosis of secondary breast cancer can be difficult for a variety of reasons. A GP will not see many cases and thus may not be able to recognise the symptoms quickly, and it can develop many years after treatment of primary cancer. In addition, the signs and symptoms can vary widely, as they are dependent on where the cancer has spread to (eg bones, lungs, liver, spine or brain).

Macmillan Cancer Support reports the common signs and symptoms of breast cancer as:

  • unexplained weight loss;
  • loss of appetite;
  • severe headaches;
  • altered mood or personality;
  • altered vision or speech;
  • nausea, jaundice, itchy skin;
  • breathlessness or dry cough;
  • dizziness, loss of balance;
  • weakness or numbness of the limbs or pins and needles of toes, fingers and buttocks;
  • lumps / swelling under the arm, breastbone or collarbone; and
  • aching in the bones that doesn’t get better with pain relief.

What can be done to improve diagnosis?

Breast Cancer Now urges practical, common sense measures to ensure prompt diagnosis. These include raising awareness of red flag signs and symptoms in primary breast cancer patients who have completed treatment; better training and support for GPs to recognise signs; alerts for red flag symptoms to be included in IT software for GPs; and that patients previously treated for breast cancer have their symptoms taken seriously and investigated promptly.

Sadly, secondary breast cancer cannot be cured as there are no drugs which are permanently effective. However, it may be controlled for some years with treatment which also helps to ease symptoms and dramatically improve quality of life.

Campaign support

Over 60,000 people signed Breast Cancer Now’s petition to show their support for the recommendations to improve diagnosis, treatment and assistance offered to people living with secondary breast cancer. Thanks to this backing, charity representatives have now been able to secure meetings with health ministers to discuss these recommendations.

If you need help

The clinical negligence team at Penningtons Manches Cooper acts for clients with breast and other cancers where there have been failures in the care provided. These include delays in diagnosis, failure to recognise possible recurrences and misinterpreting or mislaying results of investigations. Reports of missed opportunities to diagnose at an early stage and patients’ symptoms not being taken seriously are sadly all too common.

Specialist members of the team are happy to provide initial advice and an informal, no obligation conversation with anyone who has concerns about the care they have received.

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