1 August 2016
New report from Macmillan Cancer Support celebrates advances in cancer treatment and care but warns more needs to be done to cope with increasing demand
More than 170,000 people are living with cancer in the UK who were diagnosed in the 1970s and 1980s, according to new research released by Macmillan Cancer Support and Public Health England’s National Cancer Registration and Analysis Service (NCRAS).1
In a new report ‘Cancer: Then and Now’ out today, Macmillan reveals for the first time the number of cancer survivors from the 1970s and 1980s in the UK. People on average are twice as likely to survive at least 10 years after being diagnosed with cancer than they were at the start of the 1970s.2 These improvements in survival are partly due to earlier diagnosis – by way of screening programmes and advances in diagnostic tools, as well as more refined treatment.
The report compares the diagnosis, treatment and care of cancer then, to the experiences of cancer in the 2010s. While documenting drastic improvements over this time, particularly in available treatments, it also acts as a stark reminder that cancer continues to be a devastating diagnosis and one which affects a person long after their treatment has finished.
It highlights the consistent and growing support the charity offers people affected by cancer, including the introduction of Macmillan nurses in 1975 to the first Macmillan-trained benefits adviser in 2005. The charity, launches its brand new advertising campaign today which shows the breadth of services available to people affected by cancer such as Macmillan professionals, information and services and warns that demand for these services will continue to grow as more people with cancer live longer.
But those who survive many years after a cancer diagnosis do not necessarily have a good quality of life. Macmillan estimates that there could be around 42,500 3 people living with cancer who were diagnosed in the 1970s and 1980s who may still be dealing with problems linked to their cancer, such as long-term side effects.
Even today patients still need tailored support to manage the aftermath of cancer, as many may still have to deal with long-term side effects in the future. Around 625,000 people in the UK are estimated to be facing poor health or disability after treatment for cancer.4 Long-term side effects can include chronic fatigue, incontinence and sexual difficulties. That’s why Macmillan offers patients a range of information guidance on late effects of treatment as well as specialist clinical services across the country.
With the numbers of people living with cancer in the UK set to grow from 2.5 million people to 4 million by 20305 more people than ever will need support with the long-term effect of cancer.
While the charity provides a range of information through its website, mobile units and information centres, it is vital that the NHS ensures patients are given all the right support and know where to find information and help when they need it. Worryingly, recent analysis from Macmillan shows an estimated 116,000 cancer patients last year in England did not have the potential long-term side effects from their cancer fully explained to them.6
Helen Taskiran, 60, from London was diagnosed with bowel cancer 25 years ago. She says:
“It all started in the 1980s with a change to my bowel habits and progressed to excruciating pains. The doctors came up with all sorts of theories of what was wrong from changing hormones to Irritable Bowel Syndrome to not eating enough fibre.
“When I asked for a prognosis, they told me I’d be lucky to survive six months and CT scans weren’t widely available so it was a scary time of wait and see. I’ve since been treated for multiple cancers but the first, for bowel cancer which was eventually diagnosed in 1991, has had the biggest impact on my life. I’m still alive but have suffered years with a long list of side effects: constant diarrhoea, swollen knees and ankles, insomnia, bouts of depression, and bowel blockages. I deal with them by having a liquid diet and lots of rest but sometimes it is so bad I end up in A&E.”
Jane Maher, Chief Medical Officer at Macmillan Cancer Support, says:
“With so many people alive today who were diagnosed with cancer in the 1970s and 1980s, it’s clear that having cancer is no longer necessarily the death sentence it once was; that is a cause for celebration. But while it is not always life-ending, it is life-changing and we need to ensure that people who have had the disease or who are living with it have a good quality of life and tailored, appropriate support.
“We know that thousands of people are living with the consequences of yesterday’s treatments, illnesses such as heart disease or osteoporosis. They may also be dealing with other issues that are a result of their cancer such as money worries if they are too ill to work. In the future we will have even more people living with cancer in the long-term. Our health service needs to be equipped to meet the increasing demand over the coming years.”
Lynda Thomas, Chief Executive at Macmillan Cancer Support, says:
“Today’s report highlights the ever-changing story of cancer in this country. And today we launch our brand new advertising campaign which highlights the breadth of Macmillan services available today to help people not only cope with the devastating news that they have cancer, but the impact this has on their work, finances, relationships and of course, their health. We’re still here, as we were decades ago, to reach as many people affected by this disease as we can – as the numbers rise and their needs get more complex.”
For further information, please contact:
Jess Owen, Media & PR Officer, Macmillan Cancer Support
0207 091 2407 (out of hours 07801 307068)
Notes to Editors:
1. Macmillan-NCRAS UK Cancer Prevalence Project, complete cancer prevalence estimates up to December 2013. Based on unpublished data as of August 1 2016.
This work is part of the Macmillan Cancer Support and Public Health England’s NCRAS Partnership Work Plan. The data sourced are presented in collaboration with: the Welsh Cancer Intelligence and Surveillance Unit, the Health Intelligence and Knowledge Management Division, Public Health Wales; the Scottish Cancer Registry; and the Northern Ireland Cancer Registry, which is funded by the Public Health Agency, Northern Ireland.
2. Quaresma M, Coleman MP and Rachet B. 40 year trends in an index of survival for all cancers combined and survival adjusted for age and sex for each cancer in England and Wales, 1971-2011: a population-based study. The Lancet 2014; 385: 1206-1218. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2814%2961396-9/fulltext. Based on net survival for all types of cancer in England. 10-year survival for adults for all cancers combined in England is predicted to be 49.8% for those diagnosed in 2010-11, compared with 24.0% for people diagnosed in 1971-72.
3. We applied the proportion of people who are affected by cancer at some point in their lives and who are facing poor health or disability after treatment (25%) to the 170,000 figure to reach 42,500.
Figures quoted from expert consensus collated as part of Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment. http://www.macmillan.org.uk/documents/be_macmillan/mac15485-cot-throwing-the-light-report-pages-2015-full.pdf Consensus was reached by consulting with a range of UK experts in the field, including members of the National Cancer Survivorship Initiative (NCSI) Board, the NCSI Pelvic Cancers Project Steering Group, the Consequences of Cancer and its Treatment Collaborative (CCaT) and other leading researchers and professional societies.
4. Cured but at what cost? Long-term consequences of cancer and its treatment, July 2013, p1, http://www.macmillan.org.uk/documents/aboutus/newsroom/consequences_of_treatment_june2013.pdf.
5. Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015.
6. Macmillan estimate based on the 42% of all respondents who said they were not fully explained to them (Quality Health, National Cancer Patient Experience Survey 2015, http://www.ncpes.co.uk/index.php/reports/national-reports/2488-cpes-2015-national-results/file) applied to the 280,000 people had a first treatment for cancer in 2015 (NHS England Cancer waiting times.https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/) to give a minimum number of those who did not have their side effects fully explained to them. When asked about side effects that could affect them in the future rather than straight away, 50% said they were fully explained, 42% said they were not fully explained (26% to some extent, 15% not explained), 5% said they did not need an explanation and 4% did not know / could not remember.
Cancer registration data on individuals who were diagnosed with cancer and alive on the 31st December 2013 were extracted from the registration systems for England, Northern Ireland, Scotland and Wales by each registry and provided to NCRAS in anonymised format. Cancer registrations were categorised into female breast, colorectal, lung, prostate and all other cancers (excluding non-melanoma skin cancers). Data on age, sex and year of diagnosis were also used for analysis.
A negative binomial regression model was used to estimate the number of people who were still living with cancer at the end of 2013 and who were diagnosed before cancer registries were established in their respective nations (for England and Scotland this was before 1971, for Wales before 1985 and for Northern Ireland before 1993).
Results presented here are for all cancers (a total of female breast, colorectal, lung, prostate and all others cancers excluding non-melanoma skin cancer) by age group at time of diagnosis for all persons by selected decade.
About Macmillan Cancer Support
When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
To get involved, call 0300 1000 200
today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00
(Monday to Friday, 9am–8pm) or visit macmillan.org.uk