The consequences of cancer
The story of cancer is changing. Improvements in the diagnosis and treatment of cancer mean that more people are living longer after a cancer diagnosis, but not everyone is living well. Macmillan Cancer Support estimate that at least 500,000 people in the UK experience long term health conditions caused by their cancer or its treatmenti.
Cancer treatment is often invasive and can have both short and longer term consequences, some of which may arise years after treatment was administered. The consequences of treatment can include physical and psychological effects, such as chronic fatigue, sexual difficulties, mental health problems, pain, and urinary and gastrointestinal problems. Certain cancer treatments also increase the risk of other serious long-term conditions such as heart disease, osteoporosis or a second primary cancer. Failure to identify and manage these problems effectively can compromise recovery and quality of life.
With an increasing role for GPs and community-based professionals in caring for patients following their cancer treatment, this is an ideal time for Macmillan and the RCGP to work together to establish consequences of treatment as a recognised issue within primary care.
Macmillan built greater visibility for cancer survivorship issues through involvement in the National Cancer Survivorship Initiative (2008 – 2013), and subsequently the management of consequences of treatment as part of a cancer care Recovery Package has been recognised at a national levelii. A priority area for Macmillan has been the consequences of pelvic cancer treatment (including prostate, cervical and colorectal), due to the large numbers of people affected and the risk of long-term effects from curative radiotherapy. A recent report from NHS England found that a third of people treated for colorectal cancer reported not having full control of their bowels in the past week, and a quarter said they were experiencing difficulties concerning sexual mattersiii. These distressing problems can negatively impact on relationships and mental health and prevent people from participating in activities that were previously a normal part of their lives, such as going to work and socialising.
Macmillan have been testing new service models for the care of people with consequences of treatment and working to engage professionals in secondary care to improve referral processes. A collaboration with the British Society of Gastroenterology has significantly increased awareness of gastrointestinal problems following cancer treatment. However whilst engagement is growing among specialists many people are not reaching the new services due to a lack of awareness and understanding from both patients and primary care.
People whose symptoms arise years after their treatment ended are often no longer in follow-up with their oncology team. Their GP is likely to be their first point of contact and yet sometimes people can be reluctant to raise these problems, as they may seem embarrassing or trivial when compared to cancer. It is therefore important that patients at risk of consequences of treatment are proactively identified through the consistent use of READ codes to record cancer treatments and asked regular “trigger questions” to uncover problems.
The management of mild to moderate consequences of treatment at an early stage can significantly improve outcomes for patients, and equally important is the establishment of referral pathways for complex cases. To support this Macmillan is funding expert panels to develop a range of clinical guidance. The aim of the guidance is to help professionals in both primary and secondary care to identify and manage consequences of treatment, setting out key investigations, treatment and advice. For the list of current resources, see www.macmillan.org.uk/cot.
Working with Macmillan’s established network of GPs, the RCGP Consequences of Cancer Treatment Spotlight Project will aim to raise awareness of this issue through dissemination of existing resources and the development of further tools and guidance to assist GPs to support this often overlooked patient group. RCGP and Macmillan are still in the process of finalising this work, including the planned appointment of a clinical champion, and announcements will be made in the near future as to what it will cover.
Resources available will include:
Managing lower gastrointestinal problems after cancer treatment – A quick guide for health professionals
Due to be published in June, this new resource for GPs, oncologists and radiographers outlines the assessment and investigation of chronic GI problems caused by cancer treatment, provides details of appropriate treatments, and guidance on when specialist advice should be sought.
“Although a small number of people will need specialist care, the quality of life of most of those affected can be improved by simple, inexpensive and effective interventions delivered by informed GPs and nurses” - Charles Campion Smith, Macmillan GPi Throwing Light on the Consequences of Cancer and its Treatment, Macmillan Cancer Support, July 2013
ii Improving Outcomes: A Strategy for Cancer – 4th Annual Report, NHS England, December 2014
iii Quality of Life of Colorectal Cancer Survivors in England, NHS England, March 2015