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Breast cancer patients struggling years after diagnosis, UK

One in six (17%) patients calling Care’s Helpline in 2014 were still struggling with the aftermath of cancer and its treatment more than two years after their diagnosis.

At a time when regular check-ups in the NHS commonly stop after two to three years, people affected by breast cancer are still looking for vital information and support.

Staggeringly, the Helpline still receives calls from those five or more years after diagnosis. In fact this accounts for 8.5% of people calling the Helpline, further evidence that breast cancer does not ‘end’ after treatment has stopped.2

Of those diagnosed two years ago or more the most common issues they sought support for include:

  • Debilitating side-effects, including lymphoedema (swelling of the arm, hand or breast area) or hot flushes (17%)3
  • Emotional wellbeing, such as depression or a lack of body confidence (15%)4
  • Struggles with ongoing treatments such as tamoxifen (9%)5

With more than eight out of ten people (85%) surviving breast cancer beyond five years the need for continued support and information is increasing.6 The long-term impact of breast cancer continues years after diagnosis and clearly some patients’ needs are not being met.

Teacher Helen Elliott, 45, from Torquay, says:

“Being diagnosed with breast cancer has completely changed my life for good. Even though it is nearly four and a half years since I was told, I still live with the effects of surgery and fatigue following treatment. I am not yet at the stage where I can work full-time like I used to or have as active a social life as before.

’s Helpline has been a great support. They have answered any questions I had and gave me the reassurance and care I needed. I felt very empty and disorientated after treatment ended and it is comforting to know there is always somewhere to go with any concerns I may have.”

Samia al Qadhi, Chief Executive at Breast Cancer Care, says:

“Cancer doesn’t stop after you finish hospital treatment. The time when friends and family assume you should be celebrating is actually the time many need the most support.

“We know that almost half of breast cancer patients feel they are not given enough care and help from health or social services after leaving hospital after surgery.7 Also, in the years following, many are terrified the cancer will come back, or are trying to readjust after their life has been turned upside down. Ongoing side effects can be extremely distressing, attack confidence and have a devastating impact on someone’s quality of life.

“It is completely unacceptable that anyone affected by breast cancer is left feeling isolated. It is vital they know there is somewhere to turn but we need funds to allow us to continue to run our free, confidential Helpline for anyone affected.”

As more people are diagnosed and are also living longer with the disease, demand for Breast Cancer Care’s support services is huge. The Helpline offers valuable expert support from someone who understands, whatever the concern or question.

Source

1. 17.4% of people who called the Helpline in 2014 had been diagnosed two or more years previously. This is a total of 1,228 calls from a sample of 7,069 calls.

2. Calls to the Helpline from people more than 5 years since diagnosis – 603 out of a total of 7,069 calls – 8.5%.

3. From our Helpline statistics, 1,228 of calls were from people diagnosed two or more years ago. Of these calls, 204 (16.6%) were assigned a call topic of side effects -including lymphoedema, fatigue, hair loss and menopausal symptoms.

4. From our Helpline statistics, 1,228 of calls were from people diagnosed two or more years ago. Of these calls, 181 (14.7%) were assigned a topic of callers emotions and emotions.

5. From our Helpline statistics, 1,228 of calls were from people diagnosed two or more years ago. Of these calls, 110 calls (8.96%) were assigned a call topic of treatment, all treatments other than surgery, including chemotherapy

6. These figures are sourced from Cancer Research UK and refer to data from 2005-2009 and only apply to invasive breast cancer (doesn’t include DCIS) http://info.cancerresearchuk.org/cancerstats/types/breast/incidence/#prev

7. Latest figures from the Cancer Patient Experience Survey 2014 show that “of those patients who said they needed it, 59% said they were definitely given enough care and help from health or social services after leaving hospital.” https://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2014-national-cancer-patient-experience-survey/2014-national-cancer-patient-experience-survey-national-reports/688-2013-national-cancer-patient-experience-survey-national-report-pdf/file p.98 and p.99 The proportion of patients saying they were definitely given enough care and help from health or social services was 60% in 2010 compared to 59% in the 2014 survey.

Source: Breast Cancer Care