Introduction
If you are reading this page, it is likely that you or someone you care for has:
- finished a course of radiotherapy
- is between treatment cycles or
- is moving to another stage of care
Whatever your situation, this is a major milestone.
Reaching the end of your treatment or transitioning to another stage can be very challenging. You might feel lots of different states of mind: like relief, excitement, sadness, worry, or emptiness. You could be dealing with side effects, missing your treatment team, struggling with money and trying to return to old routines even though you feel very different. You may have expected to feel one way, but you might feel completely different. That’s normal.
During your treatment you will likely spend a lot of time with your treatment team. This may have helped you to feel cared for. However, when treatment ends or pauses, it’s normal to feel like you’re losing that safety net. Try to remember that radiotherapy continues to kill cancer cells for some time after treatment ends and your treatment team will need to wait a while before reviewing your progress to see a clearer picture of what is happening.
We acknowledge some people might not have a treatment ‘ending.’ Instead, you or a loved one might be living with cancer and managing the ongoing effects of it and treatment. This can bring its own unique challenges: physically, emotionally, and practically, with many life changes to come to terms with.
Whatever your situation, there is help and information available that can help you and your support network feel more supported, resilient, and help you manage the highs and the lows.
In this part of our Patients and Families hub, you will find resources and signposting that can hopefully help.
VIDEO: Patient experiences of finishing treatment
Philomena, Nick, Karen, Andy and Sarah share their different experiences of life after treatment. To download a plain text version, click the button below each video.
Your final treatment appointment
If your treatment has an end date, your final treatment appointment should give you the opportunity to ask questions, get information, and understand the next steps.
This could be with your treatment team, clinical oncologist, clinical nurse specialist or a therapeutic radiographer.
To get the most out of this appointment, you might want to think of questions beforehand that you want to ask. It may help to write them down. Some final appointments can be shorter than you would like.
Ask your healthcare professional to signpost to any local services that offer support and answers.
Here are some suggestions on questions you might want to ask.
- How often will I get checks or scans?
- If I have side effects or late side effects, what should I do?
- Is there any local support for people ending treatment?
- What symptoms should I look out for, that might be a sign of cancer?
- What lifestyle changes would help me make the best recovery possible?
- What exercise or activity is safe for me to do after radiotherapy?
- Who do I contact if I have questions?
If possible, take someone with you to make notes and help you remember everything that is said.
Side effects and late effects
Side effects are symptoms caused by radiotherapy. They can get worse after treatment has stopped. For example, you might have a radiation skin reaction that gets worse after your treatment has finished and takes a few weeks to improve.
Some patients also get late effects: symptoms caused by radiotherapy that start three to six months, or even later, after treatment has finished.
To find out more, you can look at our sections on Understanding Side Effects and Understanding Late Effects. They look at the early and late side effects you might experience and offer some ideas to help you manage them. If in doubt about any of your symptoms, please get in touch with a healthcare professional and ask for advice. It is important you have any symptoms investigated that might be signs of cancer. Get this ruled out as soon as possible.
It can also be helpful to read the Your Stories section of our hub. Although everyone is different, you might find inspiration in some of the stories patients have shared.
Living with challenging feelings
It is normal to find yourself worrying that the cancer might return or worsen after ending treatment or a treatment cycle. It is important to find the right support, whether that is emotional and mental health support, or support with finances.
For cancer-specific mental health support, it is useful to see what’s on offer at your local hospice. Many offer counselling and support services run by staff or volunteers. Many of us think that hospices are only about end-of-life care, but this is not the case.
You can use this directory (HERE) by Hospice UK, to search for a local hospice.
Life after Cancer brings people together who have finished cancer treatment to form support groups, with an aim to increase their physical, mental, emotional and social wellbeing.
Dr. Anna Cartwright recently joined Life After Cancer for a Fear of Cancer Recurrence workshop. You can watch the video (HERE).
Living with cancer
Thanks to advances in treatment and the care that is provided, survival rates in the UK are improving. This includes people living with advanced or incurable cancer. People living with advanced or incurable cancer understandably want to be able to talk about living well now, making plans for the future and for some, about dying and what that means for them and their loved ones.
These conversations can be difficult, but they can also bring clarity and comfort. If this is you, some of the resources below may be helpful, as well as the resources listed throughout this page.
- This RTUK Talks features an interview with Debbie (minute 17), who has Stage 4 breast cancer. The talk is aimed at workforce professionals but may give you some useful insights.
- If you are living with advanced cancer, Maggie’s has resources to help you get organised so you can focus on living.
- What does the dying process actually look like? This is a short animation by Emily Downe, and voiced by Dr Kathryn Mannix which guides you gently on a step by step journey through the process of dying.
- In this talk, Dr Kathryn Mannix, gives a very human explanation of ‘ordinary dying’.
- Cancer Research UK has a wide range of resources for anyone who wants to make suitable plans before they die.
- Marie Curie resources and stories explore how planning for death can bring a sense of peace and control.
Counselling, support groups, and conversations with friends and family can all support your mental health when living with advanced cancer. It can also be helpful to talk to your family and friends and encourage them to seek support too.
If you would like to share your experiences of living with advanced cancer to help others, please contact our team (HERE).
NHS support
For general mental health support, NHS websites for England, Scotland and Ireland all recommend speaking to your GP as a first step.
NHS guidance for patients in England (HERE).
NHS guidance for patients in Scotland (HERE).
NHS guidance for patients in Northern Ireland (HERE).
Patients in Wales can now access free online therapy (HERE) without needing to go through their GP:
Living with anxiety caused by scans
After treatment, you will quite understandably want to know how effective your treatment has been, as soon as possible. Your treatment team will often ask you to return to hospital for a scan or tests. This is usually, but not always, around three months after treatment has finished or paused. This gap is essential to allow your body time to respond to the treatment and for any side effects to settle down. Doing tests and scans before this often does not give a true picture of what is going on.
Scanxiety is a nickname for scan anxiety. It means fear or anxiety about going for an MRI, CT, PET scan or any test and the results that follow. During the follow up period (which can last for many years after diagnosis) people often talk about scanxiety as they go for their regular scan check-ups. This is a common emotion.
The Brain Tumour Charity has some good resources for handling scanxiety, even if you have a different kind of cancer.
Building a support network
Patients often say that they feel frustrated when people around them think life will go back to ‘normal’ after treatment. Cancer and treatment are life-changing, for many people getting back to how they were before their cancer diagnosis is simply not possible. The whole experience may change your perspective, how you feel and your physical capabilities.
“There’s something about the word ‘tired’ that just doesn’t come close to how exhausted you feel. I remember lying on the sofa and not being able to lift my head or open my eyes. It’s important to use the word ‘fatigue’ so people can understand that it’s not the same.”
Georgi, breast cancer patient
Many say that speaking or communicating with people who have been through something similar makes them feel understood and not alone. Others say that helping others go through treatment gives them a sense of meaning and focus.
“Having a good support network is really, really important and having support from different cancer groups is really beneficial.
I didn’t have that when I went through my cancer treatment, but there’s plenty of support out there now and I think that’s something to hold on to and reach out for.”
Karen, mouth cancer patient
Think about your support network and how you might strengthen it. Consider joining a local or online group where you can share your feelings and thoughts about your diagnosis, ending treatment, ending a treatment cycle or ongoing treatment to control cancer. This can be a good way to get support and support others who understand what it is like to go through cancer treatment.
Getting or keeping active
Click (HERE) to learn more about getting and keeping active after cancer, and with cancer.
Returning to work after cancer
A cancer diagnosis and treatment can cause serious financial stress. Taking the necessary time off work for appointments and treatment, for recovery, or to manage cancer long-term, often comes with extra costs. All at a time when you might not be able to earn as much, or any, income.
Many patients need to claim benefits. It can take one to three months to process a straightforward claim, and get the money paid into your account.
Generally, the sooner you seek help and have a plan, the better. There are choices when seeking support.
- Firstly, ask your treatment team if the hospital has any services around financial support. Sometimes clinical nurse specialists can help you fill in forms or apply for benefits, so it is worth asking.
- If you have a Maggie’s Centre near you, you can speak to a Benefits Advisor.
- Citizens Advice can also offer advice around benefits.
- And Age UK has a free national helpline for older people, with many local branches able to support people aged 50 plus with different types of financial support and help with form filling.
- Some local food banks can offer financial advice too. CAP UK has online guidance and tools, including a Benefits Calculator.
- Macmillan Cancer Support has information about returning to work and how to manage this transition.
- Macmillan Cancer Support also has resources to help you navigate the benefits system.
Finding a positive focus
If you are not ready to return to work, patients have told us that it can help to have small projects and goals to work towards as you recover from treatment or adjust to maintenance treatment. This could include cooking, writing, arts, crafts, gaming, gentle gardening or looking after houseplants. A small project that you enjoy can be a good focus when you have been through a life-changing event like cancer and cancer treatment.
More information
Companion service | Marie Curie
Maggie’s has centres in Scotland and England. Learn more about the support on offer Emotions after treatment | Maggie’s
Please go to our support section for a range of organisations and online services that might be useful for you or your loved ones:
