Thursday 17th June 2021

Dr Nicola Miller (Principal Clinical Psychologist), Julie Cain (Teenage Cancer Trust Nurse) and Samantha Termer (Youth Support Coordinator) work together at The Beatson West of Scotland Cancer Centre in Glasgow, supporting young people through cancer. They kindly took the time to talk to us about cancer and mental health in teenagers and young adults.

Teenage Cancer Trust Nurse Julie, Clinical Psychologist Nicola and Youth Support Coordinator Sam from The Beatson in Glasgow

(L-R: Julie, Nicola and Sam)

Cancer and mental health in teenagers and young adults

Nicola: Experiencing cancer as an adolescent or young adult can have an especially big impact on emotional wellbeing and mental health.

We know that teenagers and young adults are at a unique stage in their social, emotional and cognitive development. During this time, teenagers and young adults are required to complete key developmental ‘tasks’, which include becoming more independent from family, feeling more connected to and confident among their friends, developing their identity and making plans for their future.  

This is already a really challenging time for young people and if any of these ‘tasks’ are disrupted, mental health difficulties are more likely to develop. When you add an unexpected cancer diagnosis into that mix, an experience that can interrupt the completion of these tasks, then mental health difficulties are all the more likely.

There are so many examples of this disruption and its impact. Young people talk about missing the routine of going to school, university or work and not being able to spend as much time with their friends. Young people talk about feeling different from their peers, both physically and emotionally. At a time when young people should feel more connected to peers, they often feel disconnected and isolated. Similarly, at a time when young people are trying to become more independent, cancer can increase their reliance on family and carers.

At a time when young people should feel more connected to peers, they often feel disconnected and isolated.

We also know that some treatment side-effects, such as hair loss, weight changes and/or loss of muscle tone, can have an impact on self-esteem and body image. Young people also talk about the struggle in developing romantic relationships, lacking confidence, and feeling concerned about their fertility. The combination of these challenges can of course increase distress and, for some, the likelihood of future mental health difficulties.

Julie: I agree, the disruption to life goals and aspirations is a big thing. Even simple things like going to the prom or starting driving lessons – it doesn’t have to be massive milestones. It can often have a big impact on their mental health when they’re not able to do what they see as ‘normal’ life things.

Sam: It can also be very isolating seeing your peers do things like going to prom or going to uni. You can become quite separated from your friends and it can lead to things like isolation and low self-esteem.

How does cancer affect young people’s mental health?

Nicola: Cancer can affect your mental health in lots of different ways. Many young people experience feelings of anxiety and worry, not only about their immediate future, but also their longer-term future. As well as disrupting day to day life, cancer often brings with it a lot of uncertainty: ‘what will treatment be like’, ‘how will I cope’, ‘will treatment work’, ‘will cancer come back’, ‘will my friends and family be OK’, ‘what does my future look like now’?, all of which understandably contribute to appropriate feelings of anxiety, worry and fear. 

Treatment can be really tough; many young people struggle with procedures and the side-effects of treatment, and feeling anxious about needles, tests and scans is common. Many young people also worry about nausea and fear being sick, even before their next cycle has started. We also know that the shock of diagnosis and the gruelling nature of treatment can be traumatic, in fact some young people may develop symptoms of Post-Traumatic Stress Disorder (PTSD).

As well as disrupting day to day life, cancer often brings with it a lot of uncertainty.

Young people also talk about feelings of sadness and a loss. Young people talk about feeling and looking very different: ‘I don’t recognise myself anymore’, ‘I don’t know who I am’.  Young people often talk about losing the life that they’d hoped to live and a realisation that ‘I’m not invincible, bad things can happen, and they can happen very quickly and derail what I thought the future was going to hold for me’. Young people also talk about missing shared experiences with peers and growing apart – ‘you can be in a room with the friends that you’ve had since childhood, but just not feel as connected to them’.  

It’s OK not to be OK

Nicola: Sadly, I think there is still a stigma and a lack of understanding about mental health.  We all experience periods of good physical health and varying degrees of poor physical health, and the same is true of our mental health, yet we rarely give them equal priority.

It’s so important to remember that we all experience emotions, and we all struggle at times.

I think we’ve come a long way in recent years, we are getting better at talking about our mental health but asking for support is still a challenge for some. It’s so important to remember that we all experience emotions, and we all struggle at times; it’s absolutely OK not to be OK and to recognise that sometimes we all need a little extra support.

Yet, we know that there are still obstacles that stop young people (and ourselves!) from asking for help.

Some young people tell me that they coped really well with other stressful life events and are surprised that living with and beyond cancer can be tricky. I hear a lot of young people say: ‘I should be coping better’, ‘I shouldn’t need emotional support, I’ve never needed it before’, which can make it hard for them to acknowledge to friends, family and professionals that they are struggling now.

Some young people tell me that they aren’t sure if they’re sad, anxious or worried enough to ask for support: ‘Other people have it worse than me’. Similarly, some young people are concerned about waiting lists and don’t want to ‘waste’ my time or to prevent another young person from accessing psychological support.

Many young people also tell me that they feel guilty or ashamed for experiencing distress, particularly when treatment has ended: ‘I didn’t want to mention that I’ve been struggling; I didn’t want to mention I’ve been feeling anxious because I should just be really grateful that I’m alive – that in itself should be enough to make me happy’.

When I first meet a young person with cancer, I want to hear about their feelings, the challenges and any positives, to let them know that these make sense given their experience of cancer. It’s really important to normalise and to validate this.

I also want to explore and pre-empt what might be difficult moving forward and to think together about what might help and when psychology support might be helpful. It’s also important to remind young people that accessing psychological support is not a sign of weakness, it is not a reflection of whether you’re a ‘coper’ or not, it’s just the way of things: living with and beyond cancer can be really, really hard.   

Mental health after cancer treatment ends

Nicola: Many of the young people that I work with tell me that the end of treatment is absolutely the hardest part for them; young people and their families are often really surprised by this, but I think there are numerous reasons for this experience.

During treatment itself, although there are periods of anxiety and worry, perhaps about the diagnosis and treatment, for many, treatment brings with it a plan, a routine, and a team of people who are committed to supporting the young person. Young people often tell me that if all is going relatively well, the process of treatment can be quite containing and really supportive, and there’s a real sense of ‘head down, I know what I need to do, let’s just get through cycle one, cycle two and so on’.

The end of treatment can bring a whole rollercoaster of emotions: relief, happiness and joy that treatment is complete, uncertainty about what happens next and fears for the future.

Young people often talk about not knowing what to do next and ask lots of really important questions – ‘how do I return to ‘normal’ life’, ‘do I even want to return to normal life’, ‘how do I reconnect with friends’, ‘how do I build a life for myself that that is different to the life that I’d planned?’  Young people often tell me that they feel fundamentally different, for some this can be scary, for others this can be an exciting but confusing time.

The end of treatment can bring a whole rollercoaster of emotions.

Relationships and friendships can feel very different after cancer, priorities and experiences may have changed, connections might not feel quite the same. Returning to education or employment can feel daunting for some; plans may need to change or new opportunities become appealing.

Young people also talk about the fear of cancer returning, fears related to fertility and potential late-effects of treatment. Recovering from treatment can also be really tough, it takes time, young people, families, friends, partners and employers may have different expectations about how quickly this should happen.

The end of treatment is a huge period of adjustment for many which is coupled with the security of the hospital and medical team stepping back; less time is spent in hospital, there are fewer opportunities to see the team and routines change, which in itself can be daunting.

Many of the young people I see put a lot of pressure on themselves to feel a certain way: ‘I should feel better than I do’, ‘I should be happy now that I’ve finished treatment’, ‘I should be excited’, ‘I should be optimistic’, ‘I should be hopeful’.

And when these feelings aren’t experienced, young people talk about feeling shame and guilt for not being grateful, for not seizing the opportunities and not living life to the full. When young people don’t feel the way they think that they should, that can also create a lot of anxiety and sadness.

Julie: For some young people, physical recovery from cancer treatment takes a long time as well. Their expectation might be: ‘I should be feeling better, I should be at this milestone by now, I should be able to do this’, and it can be difficult for them to accept that, perhaps they are still a long way off being back to whatever their normal abilities are going to be.

Other people’s expectations are difficult for young people to manage, too. So people might say ‘Oh, that’s good. You’re finished so you can just get back to normal now’. Or ‘When are you coming back to work?’ And for some young people, that could be a long way off.

Spotting the signs you may need extra mental health support

Nicola: We know that living with and beyond cancer can be really hard; young people are likely to experience a wide range of feelings, and it’s OK for young people to feel whatever they might be feeling. Normalising distress is really important. We also know that spending time with close friends and family, making time for enjoyable activities, trying to keep to a routine and sharing concerns with the medical team can help.

Sometimes, our feelings start to become more overwhelming and they start to have an impact on day-to-day life: that’s when I would encourage young people to think about accessing more support.

Some of the signs to look out for are: not enjoying the activities that have always been important to you, feeling withdrawn, not wanting to touch base with friends, avoiding things that you’d like to do, but feel too worried about doing.

When emotions start to bubble to the surface a bit more, when anxiety and/or tearfulness feels a bit more unpredictable and happens ‘out of the blue’, this might also be a good time to ask for support.

Also, if distress, anxiety or worries start to get in the way of attending appointments or engaging with treatment, that would be another sign that more support with mental health is needed.

If you have an existing mental health condition and are then diagnosed with cancer, what does this mean for you and what advice might help?

Nicola: We know that mental health difficulties don’t just arise following a cancer diagnosis; some of the young people that we meet will have experienced psychological distress, perhaps prior to diagnosis or in the more distant past. For some young people, these experiences might help to support the young person through their cancer journey; they may already have found ways of coping and responding to distress that are beneficial to them; they may have had positive experiences of asking for support and acquired a network of people who they can trust and talk to about difficult emotions.

However, for some young people, the (di)stress of a cancer diagnosis may increase or trigger previous mental health difficulties. We know that young people who have experienced psychological distress in the past are more likely to have similar difficulties when faced with another stressful event in the future, such as cancer. We also know that when we are faced with an increasing number of stressors, this can exceed our ability to cope and lead to further distress. Some young people may also find that previous ways of coping just aren’t as helpful as they used to be.

Making use of strategies that were previously helpful is likely to be a really good place to start. The types of strategies and support that helped before will be different for everyone, but we would encourage young people to think about how they managed distress before cancer.

Some young people may already be accessing mental health support for a range of difficulties. It will likely be important and helpful to share this with the medical team so that both teams can work together to support the young person.

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If you’re a young person going through cancer and you feel you’re struggling with your mental health, please do speak to your clinical team, Teenage Cancer Trust Nurse or Youth Support Coordinator. They’ll do whatever they can to help you, which may include referring you to specialist support.

If you or someone else is in crisis and needs urgent help or further support, please visit: https://www.teenagecancertrust.org/get-help/urgent-help