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National Cancer Survivorship Initiative

Consequences of Cancer and its Treatment

Cancer treatment is often invasive and can have both short and longer term consequences, some of which may arise several years or decades after treatment was administered.

The consequences of cancer and its treatment can include:

  • fatigue
  • pain
  • incontinence (bowel and bladder)
  • sexual difficulties
  • osteoporosis
  • cardiovascular disease
  • psychosocial problems
  • swallowing and speech difficulties
  • lymphoedema

A failure to identify and manage these problems effectively can compromise survival, quality of life for both patient and their carers, recovery, patient experience and patient safety.

‘ After I was diagnosed with womb cancer in 2011, I found it exceptionally difficult to get information on how the treatment might affect my future sexual relationships. I experienced a range of side effects from pelvic radiotherapy, including hot flushes and premature menopause, and for several months afterwards I wasn’t able to have an orgasm. Before I was diagnosed I felt comfortable talking about sex, but having cancer changed that. It made me suddenly very protective of my sexual identity and of my body, and I found it a very isolating experience.’ Victoria 42 , south-west England.

Macmillan’s report Throwing Light on the Consequences of Cancer and its Treatment July 2013 reveals that at least 500,000 people in the UK are facing poor health or disability after treatment for cancer.  This number will increase due to improvements in survival rates.

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The challenge for the NCSI is to provide evidence of the scale and nature of these unmet needs, along with evidence that there are effective interventions to improve outcomes for patients. Macmillan Cancer Support is working with expert advisors, researchers, the Dept of Health, NHS commissioners and providers and the National Cancer Intelligence Network to develop a range of evidence.

Commissioners and providers must better understand the long-term needs of people living with and beyond cancer and how these can be met.  Throwing Light on the Consequences of Cancer and its Treatment includes recommendations for health and social care commissioners, health policy makers, clinical networks for cancer, healthcare professionals, health service managers, and cancer research professionals.

Throwing Light on the Consequences of Cancer and its Treatment is available here.
Also available to download is the lay summary report Cured – But at What Cost?

The Society for Endocrinology praised the report for providing ‘invaluable insights into patients’ experiences of the next frontier of cancer care.’

The NCSI Programme of Work on Consequences of Cancer and its Treatment

The NCSI Consequences of Treatment  programme of work is led by Professor Jane Maher, Consultant Clinical Oncologist at Mount Vernon Cancer Centre and Chief Medical Officer, Macmillan Cancer Support. It is currently managed by Lesley Smith, NCSI/Macmillan Cancer Support.

The programme covers three main areas:

Our current priority is cancers of the pelvic area, due to the significant numbers of people affected, and the severity of effect on some people’s quality of life. The learning gained through this Pelvic Cancers Project will influence approaches to dealing with consequences of treatment for other tumour areas.

We support the work of the Macmillan Consequences of Cancer Treatment collaborative (Macmillan CCaT),  a unique collaborative community of 11 senior research-active nurses and one physiotherapist, who are committed to developing and evaluating innovative assessment methods and interventions, to address the physical and psychosocial consequences of cancer and its treatment. As a community of researchers with clinical backgrounds, CCaT acts as a link between Macmillan on the one hand and specialised nurses and allied health professionals  on the other. CCaT has become a key ‘distilling and connecting’ group, alongside the Macmillan GP advisors and the Macmillan Palliative Care Collaborative.
CCaT work
CCaT now has three products that can be used to improve outcomes for people after cancer treatment:
*   a patient booklet - What to do after cancer treatment ends: 10 top tips (2012)
*   a guide for professionals to accompany the 10 top tips which also covers the NCSI Recovery Package (2013) and
*   a Nurse Competence Framework to help build much-needed workforce skills and confidence.

Last updated on July 10, 2014