20 November 2015
Macmillan Cancer Support calls for tailored support for cancer patients
Tens of thousands of people in the UK are currently living with a form of rare cancer , such as cancer of the heart, ear or penis, according to new research by Macmillan Cancer Support and Public Health England’s National Cancer Intelligence Network (NCIN) ,.
The new data, from a joint research programme between Macmillan and NCIN, reveals the surprising numbers of people living with some of the rarest forms of the disease including ,:
• Almost 700 people with heart cancer
• Almost 2,000 people with cancer of the nasal cavity and middle ear
• Around 4,000 men with cancer of the penis
• Around 5,000 people with cancer of the salivary glands
• Almost 5,800 people with cancer of the eye
• Around 6,700 people with cancer of the anus
This is the first time such a detailed picture of the number of people living with rare cancers has been known.
Macmillan is concerned that as the NHS is under increasing pressure to meet the needs of a growing number of cancer patients, it will struggle further to give people with rarer cancers – whose needs are often more complex – the level of care they deserve.
Existing research shows that some rarer cancers are more likely to be diagnosed through emergency admissions than other cancers . This means treatment is likely to be more aggressive and many people will struggle to return to full health after their diagnosis.
In addition, people with rarer cancers are more likely to feel isolated and encounter poorer patient experience than those with more common cancers; one in five are not given any information about support or self-help groups after diagnosis .
Joanne Hill, 45 from Wiltshire had malignant melanoma in her eye. She says:
“When I was diagnosed, I was given plaque radiotherapy and kept in hospital for five days but I was really disappointed that when I left I wasn’t offered counselling. I was also discharged without any aftercare. I was referred back to my local hospital but the consultant there didn’t have experience treating my type of cancer, which left me feeling isolated and unsupported. Even six years after my diagnosis it’s not clear where to seek help.”
Lynda Thomas, Chief Executive at Macmillan Cancer Support, says:
“People with rarer cancers often feel incredibly isolated and lack the specialised care they need. They have a worse patient experience, worse survival rates and often poor access to support. This is not good enough.
“It is vital the Government and NHS fully funds and implements the ‘Recovery Package’, a tailored support programme, recommended in the Cancer Strategy for England. This will ensure people with cancer get the help they need before, during and after treatment and give rarer cancer patients the best possible chance of living well with their disease.”
Professor Julia Verne, Head of Clinical Epidemiology at Public Health England, said:
“Less common cancers account for over half the cancer deaths in England. Our work with Macmillan on understanding who is affected by which cancers helps us to assess where the burden lies so we can better support people, particularly those who feel isolated because they are unable to speak to someone suffering from the same condition. And, of course, support the NHS to provide the best possible treatment and care.”
Some examples of the type of support included in the ‘Recovery Package’ are access to a treatment summary, sent to the patient’s GP so they can monitor for any potential consequences of treatment, access to follow up care in different formats and education events to help cancer patients spot signs of recurrence.
Macmillan’s report ‘The Rich Picture on people with rarer cancers’ tells the unique story of the numbers, needs and experience of people living with a range of rarer cancers.
For further information, please contact:
Charlotte Morris, Media and PR Officer, Macmillan Cancer Support
0207 091 2467 (out of hours 07801 307068)
Notes to Editors:
The UK Cancer prevalence project is part of the Macmillan Cancer Support and Public Health England’s National Cancer Intelligence Network Partnership Work-Plan. Data are sourced and presented in collaboration with the Welsh Cancer Intelligence and Surveillance Unit, Health Intelligence Division, Public Health Wales, Public Health Wales, the Scottish Cancer Registry and the Northern Ireland Cancer Registry. Outputs from the Cancer Prevalence project cancer be found here: http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Ourresearchpartners/NCIN.aspx
(accessed October 2015).
1. ‘Rarer cancers’ are sometimes defined as all cancers outside the top ten most prevalent cancers. Here we highlight some of the less commonly diagnosed and prevalent cancers within the wider group of ‘rarer cancers’.
2. NCIN. 2015. Macmillan-NCIN work plan. 20-year cancer prevalence in the UK, by cancer site. Macmillan and the NCIN are working in partnership to develop robust data analysis and insight, which increases our understanding of the UK cancer population and helps make personalised care a reality. Find out more about our work here. Data are for all nations and UK combined, all ages, for the following detailed cancer sites:
• Anus (ICD-10 code C21),
• Cancer of Unknown Primar (ICD-10 codes C77, C78, C79, C80),
• Head and neck - Eye (ICD-10 code C69),
• Head and neck - Salivary Glands(ICD-10 codes C07, C08),
• Heart, Mediastinum and Pleura (ICD-10 code C38),
• Nasal Cavity and Middle Ear (ICD-10 code C30),
• Penile (ICD-10 code C60).
Cancer site data is based on first diagnosis of each specific cancer and relate to tumours diagnosed, rather than people. As such some people will be double-counted if they have been counted with two or more cancers of a different site, within the 20-year period.
3. The number of people living with cancer is a measure of cancer prevalence. Cancer prevalence describes people living with cancer (the number or proportion of people alive on a specified date who have been diagnosed with cancer at some time in the past). Our statistics are based on 20-year cancer prevalence as of the end of December 2010 only. More people will still be living with cancer at the end of 2010, who were diagnosed with cancer prior to the 20 year period. By linking cancer registrations to mortality records we quantify how many people were diagnosed with cancer between 1991 and 2010, and who were still alive on 31st December 2010. Northern Ireland data are 1993-2010 only.
4. NCIN. 2014. Routes to diagnosis. Routes to diagnosis 2006-2010 workbook (a).
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