Understanding the terminology used
You might hear a variety of terms and words being used, and these might mean different things to different people. Many of the words used are not ones that we hear regularly and you may feel uncomfortable reading them. We don't want to distress you, but instead hope that defining what we mean when we use these words will provide an opportunity to think and talk about some of the more difficult or less discussed things in life.
It's also important to understand and be clear with your doctor, nurse and the team looking after you, exactly what they mean with the words they use. If you aren't sure, or don't understand, ask.
We've used the word 'incurable' to mean that your cancer is not responding, or is no longer responding, to treatment that could cure you. At this stage there may still be cancer treatments that can help control your disease, slow down its progression, or reduce the impact it has on how you feel physically. However, during this time you may experience some uncomfortable symptoms and side effects. Be sure to discuss any concerns with your Clinical Nurse Specialist (CNS) and wider medical team as often they will be able to help. You may be offered symptom control treatment (also called palliative care) to help manage or ease any symptoms you are experiencing. Depending on your individual needs this might mean that both a gynae-oncology CNS and a palliative care CNS are involved in your care.
The word 'palliative' and occasionally the word 'terminal' may be used to describe this phase of your treatment, so try not to be alarmed if you hear these words. It's important to remember that people may live with an incurable, palliative or terminal illness for weeks, months or even years. Supportive and palliative care specialists see people according to their needs and symptoms, not because they necessarily only have a short life expectancy.
You might also hear the term 'end of life'. It is helpful to find out what your medical team mean if they use this phrase. Although it can sound frightening the main reason for using this term is to ensure people with cancer that cannot be cured are prioritised for the help and support they need.
Additionally, the terms 'hospice care' and 'palliative care' are used. It can be daunting to hear these words but they simply mean the holistic and total care of someone who is living with an advancing illness. The aim of palliative care is to maintain and improve your quality of life and offer support to you, your family and your friends during the course of your illness.
Hospice care and palliative care focus on you and your concerns. These could be physical, emotional, spiritual and social. It can be provided by a variety of people ranging from your GP and community nursing team or hospital team, to hospice and specialist palliative care teams, sometimes referred to as 'symptom control teams'.
It is important to give yourself time to ask questions about these terms, now or in the future, and remember that while your cancer may not be curable, there are still many things that can help you live well for as long as possible.
Who will be looking after you?
When you and your medical team understand that your cancer is incurable, you may be referred to a symptom control or specialist palliative care team. The intention of a referral to palliative care or a hospice is to provide additional support to your existing cancer treatment team to ensure you live as well as possible with your cancer, for as long as possible.
Several studies have shown that early referral to a hospice or palliative care team is very helpful in ensuring people feel better for longer.
You can also request a referral to palliative care or a hospice at any stage of your illness from your GP or hospital team, whenever you feel you might need some extra support. Your palliative care or hospice nurse will usually work in partnership with your existing CNS to provide you with the care that you need.
It is important to keep in mind that the care teams and support they provide might differ depending on where you live in the UK. Talk to your CNS about what additional support you can access in your area.
Find out more
The information on this page is approved by the Information Standard scheme to ensure that it provides accurate and high-quality information.
Last reviewed: May 2017
Next review: April 2020