New research reveals a staggering 136,000 people now living with ‘chronic cancer’ — and for the first time shows thousands are missing out on the support they need

Media & PR at Macmillan
Nov 4 · 6 min read

· Pioneering new study from Macmillan Cancer Support identifies ‘chronic cancer’ group for the first time

· Research shows that up to 100,000 people with treatable but not curable cancer are going without much-needed support

At least 136,000 people in the UK are living with a ‘chronic’ form of cancer known as treatable but not curable* — cancer that can be managed but very rarely cured — new research reveals today.

The pioneering study from Macmillan Cancer Support reveals this new group of patients for the first time and further research from Macmillan highlights how the complexity and uncertainty of the condition is likely to be causing them significantly higher levels of anxiety, fear, pain, sleep problems and fatigue. This is often due to factors including the requirement for constant tests, appointments and procedures to monitor the disease, prolonged treatment to extend life and an all-consuming unpredictability about the prognosis.

With the right support and treatment, these people should be able to live their lives as fully as possible. However, despite hard-working professionals’ best efforts, more than three quarters (77%) of treatable but not curable patients are not getting the emotional or physical support they need with issues related to their cancer. This is significantly higher than for people with cancer overall (68%).

Macmillan warns this lack of support is being made worse due to the workforce challenges facing the health and care service; at present, overstretched healthcare professionals often don’t have the time or resources to provide the personalised care this group urgently needs. The charity says the changing nature of cancer and complexity of conditions like this is another reason why it is so vital there are enough NHS staff, with the right skills and right resources, to provide the personalised care patients need and deserve both right now and in the future.

As a charity which is almost entirely funded by public donations and provides 24/7 support to millions, Macmillan will continue to do all it can to be right there for people living with cancer, including those with treatable but not curable diagnoses. However, it cannot do it all alone and so it continues to call for donations to help its services be there for more people affected by cancer, and call on the governments across the UK to address the staffing challenges facing the NHS and social care.

*Definition: Cancer that can very rarely be cured, but can be treated to help manage symptoms or slow the progression of the disease and extend people’s lives.[i]

[i] The statistic is based on people alive in 2015 who showed evidence of treatable but not curable cancer between 2012 and 2015 in England. The treatable but not curable cancer population only includes those who were not in their last year of life on the 31st December 2015.

Case studies living with treatable but not curable cancer

Saima, an entrepreneur and blogger aged 30 from Kent, living with treatable but not curable lung cancer, said:

“Oncologists are often busy fixing the physical aspects only, while patients remain in a shell-shocked state. I suffered PTSD and panic disorder and it was a slow road to get the right support after I was diagnosed in 2018. At my worst even visiting the supermarket and seeing the bright lights would trigger panic attacks as it would remind me of being admitted to hospital in the lead up to my diagnosis. This level of anxiety is just exhausting.”

Mandy, an Outreach Support Worker aged 48 from London, living with treatable but not curable breast cancer, said:

“There’s a really fine line between living with metastatic* cancer and waiting to die from it. Cancer for me is a 24/7/365 affair. The kind of support I need now is very different to the support I needed at primary diagnosis and it needs to be specifically targeted for metastatic patients. In my hospital, there is only one Metastatic Breast Care Nurse who works 2.5 days per week, as opposed to her three full time colleagues for primary patients.

“The level and nature of care and support, or lack thereof, that I have received since my metastatic diagnosis has directly contributed to my reliance on outside agencies, such as Macmillan, for information and advice.”

*Metastatic cancer is cancer that spreads from its site of origin to another part of the body and can mean the patient is treatable but not curable.

Ronny, is retired and aged 64 from Hampshire, living with incurable but treatable Neuroendocrine Cancer said:

“The way healthcare professionals think of ‘stability’ might be through a lens of tumour or hormone markers, for example, whereas patients often have a much wider understanding of stability — in my case, maintaining my quality of life was really important to me. The emotional aspects of living with long term cancer, the need for constant surveillance and the ongoing worry about recurrence, can eat away at your quality of life. Similarly, it took me two to three years to get nutritional support which is key to my quality of life — this remains a work in progress.”

Healthcare professional

Charlotte Ward, a Macmillan Breast Cancer Nurse from Yorkshire says:

“I’ve witnessed first-hand that people living with metastatic breast cancer do not have the same support pathways in place as those referred for breast screening and primary breast cancer treatment. For example, while some trusts have a dedicated metastatic nurse, many nursing teams like mine have to cover patients across all stages of breast cancer.

“Not only do people living with treatable but not curable cancer have complex medical needs, but their psychological needs are often different to curable patients. While we can signpost them to metastatic peer groups for additional support, we know this isn’t always enough and that developing more personalised care for people with metastatic cancer is essential.”

Macmillan spokespeople

Nikki Cannon, Specialist Advisor for Workforce Engagement at Macmillan Cancer Support says:

“The needs of people living with treatable but not curable cancer are many and complex. These include physical impacts of long-term treatments like fatigue, dietary issues and pain control, alongside the very real psychological difficulties of living with the uncertainty of an incurable illness.

“People are living longer with ‘chronic’ cancer, their needs are becoming more complex and healthcare professionals need training to keep up. This involves advanced communications skills to handle difficult conversations and understanding of the latest treatments and management of side effects. However, the experts and compassionate workforce who want to provide personalised care for this group simply don’t have the capacity or resources to do so at present.”

Dr Moira Fraser-Pearce, Director of Policy, Campaigns and Influence at Macmillan Cancer Support says:

“The fact that 77% of people with treatable but not curable cancer across the UK feel that they are not getting all the support they need is case in point that the current NHS workforce, despite the best efforts of hard-working professionals, is not fit for purpose.

“With treatments continuing to advance and people living longer with ‘chronic’ cancers, governments across the UK must ensure people living with cancer, including those with treatable but not curable cancer, can add quality, as well as years, to their lives.”

- Ends -

For further information, please contact:

Katie Mallion, Media & PR Officer, Macmillan Cancer Support

0207 091 2423 (out of hours 07801 307068)

kmallion@macmillan.org.uk

Notes to Editors:

The Treatable but not Curable study has been published by Macmillan Cancer Support and Public Health England’s National Cancer Registration and Analysis Service (NCRAS).

About Macmillan Cancer Support

We’re here to help everyone with cancer live life as fully as they can, providing physical, financial and emotional support. So whatever cancer throws your way, we’re right there with you.

For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk

About the National Cancer Registration and Analysis Service

Data for this study is based on patient-level information collected by the NHS, as part of the care and support of cancer patients. The data is collated, maintained and quality assured by the National Cancer Registration and Analysis Service (NCRAS), which is part of Public Health England. NCRAS is responsible for cancer registration in England to support cancer epidemiology, public health, service monitoring and research.

Cancer registration is the systematic collection of data about cancer and tumour diseases. Every year, NCRAS collects information on over 300,000 cases of cancer, including patient details, as well as detailed data about the type of cancer, how advanced it is and the treatment the patient receives.

NCRAS has been granted specific legal permission to collect information about cancer patients without the need to seek consent. This permission was granted to PHE through Section 251 of the NHS Act 2006. Every year, this support is reviewed by the Confidentiality Advisory Group of the Health Research Authority (HRA).

Macmillan press releases and statements

Stay up to date with the latest news and stories from the Macmillan Cancer Support Press Office.

Media & PR at Macmillan

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We are the Media and Public Relations team at Macmillan Cancer Support. Get the latest news here: https://medium.com/macmillan-press-releases-and-statements

Macmillan press releases and statements

Stay up to date with the latest news and stories from the Macmillan Cancer Support Press Office.

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