After treatment

Finishing treatment isn't always sunshine and rainbows. In fact, lots of young people say it can be seriously tough. Support drops away and 'getting back to normal' is easier said than done.

Fear of relapse, side effects and coming to terms with what you've been through might have a big impact on your life ahead. Or maybe you're feeling strong, fearless and ready to tackle life head-on. Either way, make sure you get the help you need to accomplish your goals and take on whatever life throws your way.

Looking after your health

Your treatment might have ended but you will still need to visit an outpatient clinic regularly. At this clinic, your doctor will keep an eye out for any signs that your cancer has returned (a relapse). They will also check that your major organs, like your heart and lungs, are still functioning well and haven’t been affected by your cancer treatment. This might feel a bit unnerving and lots of people suffer from ‘scanxiety’ but it's standard procedure and important to check your body's working as it should be.

“It's normal to worry about relapse. Your doctor can help you understand the signs and when it's right to seek medical advice.”

In the longer term, your care team will be looking to see how you have recovered from your treatment, if you have been left with any problems, and get your take on how your recovery is going. They’ll tell you what future check-ups and tests you need, and when. The frequency of your follow-ups is likely to be reduced as time goes by, from weeks to months to years, and this can take some getting used to.

Your GP will be kept up-to-date throughout your treatment. Afterwards, they will become your main doctor again and your first point of contact if you feel unwell. This can feel unsettling if it’s a big change from what you’ve been used to but they will be there to help, whether you’re ill or just unsure whether to worry about something. Part of the process is learning to manage your own health and your GP can be really good at supporting you with this.

“One thing I found challenging was that as you get autonomy over health it can be hard to stay motivated in terms of keeping healthy, whether it's eating well, staying active or both. Throughout treatment, other people are there to support your health but after treatment, this control comes back to you.”

The emotional impact of finishing treatment

As well as being a milestone you might want to celebrate, it may also be a time when you begin to reflect on the enormity of what you’ve been through. This can be emotionally draining, especially if your feelings suddenly hit home. 

You may feel the loss of the nurses, doctors and other care professionals who have supported you through treatment. These people can become a big part of your life, so closing this chapter can be difficult. Filling this gap is easier said than done, especially when you’ve built close relationships and become used to your familiar faces and surroundings.

You might feel that now treatment’s over, other people can’t really understand what you’ve been through. Some young people say they don’t talk about it much with their friends because they feel pressure to be ‘better’ and don’t want to be seen as “going on about it”.  

The end of treatment can also have an impact on people close to you, like family, friends and partners. Knowing that they’re worried about you can put added stress on you, so make sure you have someone you can talk to about this – whether that’s a cancer friend or someone on the Online Community

It can be daunting to seek help, but if what you've been through does begin to catch up with you, remember that it’s normal to feel this way and you don’t have to go through it alone. Get support to help you come to terms with these feelings.

"Don't expect too much from yourself. Your life is not just going to go back to normal. You're better but you're not the same person as before."

Life after treatment

Life, as you knew it before cancer, could look a lot different now. Cancer doesn't have to define you but your experience might have changed you as a person. You might have a fresh outlook, a better idea of what you want to accomplish, or be facing new and unexpected challenges. Often young people feel ‘out of the loop’ once their treatment finishes and it can feel like everyone else has moved on.

It's also not unusual for people to have to deal with a lot of the same issues they faced during their treatment. You may be worried about your health, have relationship problems or find it hard to cope with day-to-day problems. For some, the sheer emotional weight of what they've been through can start to catch up with them. The loss of friends and 'survivor guilt' can be particularly difficult to get your head around. All these things can often feel easier to deal with once you’ve shared how you feel with someone you trust.

“If you have a young people's social worker or community worker, make sure you speak to them - they're here to help you face whatever issue you're up against.”  

Managing ongoing effects such as fatigue, disability or fertility issues can be a massive challenge, both physically and emotionally. You might have to overcome more barriers in your life because of these, whether that's to do with work, education or relationships. 

On top of all this, we know it can be a struggle to talk about it because there's a perceived expectation to 'move on' from cancer after treatment ends. But we, and other young people, know that problems don’t end with the treatment. 

A good thing to remember is there is plenty of support that could make a huge difference, not just days or weeks after finishing treatment but also months and years afterwards. There are organisations set up to help you with all sorts of things, or community groups where you can talk with people going through similar stuff. We've listed some below that you might want to check out to help you move forward in life, confidently and positively.

Useful contacts, reading and resources

Other young people’s experiences after treatment

Although everybody’s stories are unique and no two are the same, other people’s experiences can be a good source of information and reassurance. Adam, Emily, Haroon, Harry and Jennifer talk honestly about what life was like after treatment. They discuss everything from education and work, to changing the way you view life, depression, body confidence, support networks falling away, fear of relapse and more. 

Read their stories now. 

Get involved!

If you are feeling motivated and empowered to do more stuff, you could really help us out. Your unique experiences, opinions and ideas are integral to the work we do. There are loads of ways to join in and do something positive for yourself, and other young people with cancer – whether that’s skydiving to raise money or giving your views to shape our campaigns.

Find something that appeals to you.

Useful organisations

These contacts and resources are there to help you with all sorts of issues, including bereavement, emotions and mental health, fertility, finances, health, housing, parenting, personal appearance, politics, relationships, volunteering, work and further education.

Have a browse and see who’s there to help.

Aftercure

Information for teenage and young adult survivors of cancer that covers long-term follow-up, possible late-effects of your cancer or its treatment, education, jobs, equal opportunities, finances, fertility, travel, lifestyle, emotions and moving on.

aftercure.org

JTV Cancer Support

Watch videos of teenagers and young adults talk about their experiences during and after cancer. This project allows young people to explore and express their feelings, and make some sense of their very personal journeys from diagnosis onwards.

jtvcancersupport.com

Macmillan

Information and support for people living with and beyond cancer, including when you finish treatment including feelings, physical changes and when to contact your healthcare team.  

macmillan.org.uk

NHS Choices

The NHS website has information about support services, medical conditions, mental health and emotions, after effects such as fatigue, healthy eating, exercising, stress busting tips and therapies.

nhs.uk

Where next?

Updated January 2018, next review due 2020.

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