Around 7,000 colorectal cancer survivors in the UK struggle to cope with daily life years after their diagnosis, according to new analysis led by University of Leeds researchers, partly funded by Macmillan Cancer Support.^{1 2 3}

The study, recently published in the Journal of Clinical Oncology, shows that just under 1 in 6 (15%) people who survive a year to three years after a colorectal cancer diagnosis in England experience ‘social distress’, perceiving their daily social interactions to be severely negative or distressing.

The research is based on the largest ever study into the quality of life of people with colorectal cancer.

It reveals this could be happening because of a combination of financial and work concerns, people struggling with body image and/or isolation, as well as problems carrying out domestic chores and personal care tasks, which could include bathing, dressing or washing.

Macmillan is concerned that colorectal cancer survivors are particularly prone to such distress due to both the risk of incontinence, diarrhoea, bleeding or having a stoma which can follow colorectal cancer treatment and the current lack of support for people who experience such consequences from treatment.

People living with three or more long term illnesses in addition to a colorectal cancer diagnosis are especially at risk of feeling distressed.

They are almost seven times more likely to experience severe distress from their social interactions compared to those with no conditions other than cancer.

In addition, they are three times as likely to have money worries as those living with a cancer diagnosis and no other conditions, and four times as likely to feel isolated, be worried about body image and/or have problems communicating with family and friends.

Richard Surman, 70, from Surrey was diagnosed with anal cancer in 2007.  He says:

“It’s been almost eight years since my diagnosis and although I’m in remission, the long terms effects of my treatment have been and continue to be debilitating at times, both physically and socially.  

“Radical radiotherapy had a massive unannounced and unexpected impact on my bowels: for the past seven years I have had to cope with incontinence and urgency. The impact of this on my social and working life has been extreme. I’ve developed strategies for coping, but they entail limiting social interactions and incredibly complicated planning for my work, which involves extensive travelling.

“I’m grateful for my cure, but the payback has been a radical and unwelcome shift in the way I conduct my day to day living.”

Dr Penny Wright, of the School of Medicine at Leeds and lead researcher, says:

"Many people following a diagnosis and treatment for colorectal cancer are remarkably resilient. However, for a significant minority, life is more difficult. Identifying and offering support to this group is a challenge which needs to be addressed."

Lynda Thomas, Chief Executive at Macmillan Cancer Support says:

“Improvements in colorectal cancer drugs and treatment mean more people are surviving and living longer, yet these advancements also mean that cancer now has a huge impact on all aspects of people’s lives for many years.

“But the NHS is stuck in the past and hasn’t adapted. There is a woeful lack of appropriate and tailored support available for the thousands of colorectal cancer survivors. Too often the NHS neglects to look at the bigger picture of how that cancer diagnosis affects other areas of someone’s life, especially if they’re already living with other illnesses.

“If the NHS doesn’t urgently catch up, it will not only fail growing numbers of people but it will have momentous cost implications for the NHS and the wider economy. More people will depend on expensive emergency health services, struggle to get back in to work and be more likely to depend on benefits.⁴

“It is essential that the Government in England fully funds and implements all of the solutions set out in the recently published Cancer Strategy. Together they can transform cancer care; ensuring people have access to thorough and regular assessments for physical, psychosocial and emotional support as well as being directed to social care services.

“No one should face cancer alone; we simply must make sure the right support is offered to people who are surviving the disease and living with its consequences.”

Macmillan offers tailored information and advice through its support line, on 0808 808 00 00 (Monday to Friday, 9am–8pm).

The charity’s website is home to useful information for people with colorectal cancer, including a checklist to guide sensitive conversations with healthcare professionals, and a helpful ‘toilet card’ which gives you urgent access to a toilet when out in public and can be downloaded from www.macmillan.org.uk/toiletcard

The full article “Social Distress 12 to 36 Months After Colorectal Cancer” has been published in the Journal of Clinical Oncology, and is available online here.

References

1. Penny Wright et al. 2015. Identifying social distress: A cross-sectional survey of social outcomes 12 to 36 months after colorectal cancer diagnosis. Journal of Clinical Oncology. 

2. The research is based on analysis of the national colorectal PROMs survey, which was funded by the Department of Health, NHS England and the National Cancer Action Team. The analysis, was led by researchers partly funded by Macmillan. Other funding sources include Cancer Research UK.   

3. ‘Around 7,000’ is an estimate based on available prevalence data for people living with colorectal cancer in the UK. The number of people living 12-36 month with colorectal cancer is estimated as approximately 46,000 people. If we assume that the 15% of people surviving a year to three years after their colorectal cancer diagnosis in England experience ‘social distress’ holds true for the rest of the UK we estimate that around 7,000 people may be living with social distress in the UK. Prevalence data taken from:

NCIN. 2015. Macmillan-NCIN work plan. 20-year cancer prevalence in the UK. UK combined and UK nations. Cancer Prevalence UK Data Tables for UK nations and UK combined by cancer groups, 21 common cancer sites, 47 detailed cancer sites, age, sex, TSD, age at end of 2010, age at diagnosis and deprivation scores. 

4. Featherstone, H. & Whitham, L. 2010, The cost of cancer, Policy Exchange.

Source: Macmillan Cancer Support