What not to say to a young person with cancer

Young people supported by the charity Teenage Cancer Trust are sharing the most uncomfortable, bizarre, and plain insensitive things people have said to them during cancer treatment as part of its new ‘what not to say’ campaign.

From comments like ‘can I try on your wig?’ to ‘my dog died of cancer,’ and outlandish speculation that somebody’s cancer was caused by eating chocolate spread, those involved are appealing for people to take a moment to think before they speak to avoid unnecessary upset.  

They are also hoping to improve the lives of others by sharing tips about the most helpful things that people said or did to help them through treatment on the charity’s website: www.teenagecancertrust.org/say  

Teenage Cancer Trust, which provides expert nursing care and support to those aged 13-24 with cancer, put a call out to young people to contribute their experiences earlier this year. 

These have now been grouped into five main areas to avoid when talking to a person with cancer:

1. Please don’t tell us about your relatives or pets that died of cancer - or ask when we’re going to die   

Unsurprisingly comments like this are deeply upsetting and unhelpful.

Maddy Elleby (18) from Farnham in Surrey who was diagnosed with Hodgkin Lymphoma aged 16 said: “When I told people I had cancer one person asked me ‘how long do you have left?’ Others were so desperate to relate that they told me their dog had died of cancer, or their granny, or their cousin’s neighbour!”  

Chloe Brightwell (24) from Leicester who was diagnosed with Hodgkin Lymphoma aged 22 added: “Some people were brash. When I was first diagnosed, some people asked if I was going to die.  When I told people it was stage 4, I also got: ‘Does that mean it’s terminal?’ They could have phrased it so much better and just asked what stage 4 meant for me. It was an awkward thing to have to explain.”

Jordan Ramsay (23) from Aberdeen who was diagnosed with thyroid cancer at 21 commented: “The worst things to hear are being told about someone’s family, friend or someone they knew and how they died of cancer, or even just about their cancer.”

2. Speculate about why we got cancer

Some felt blamed by others for getting cancer.

Sophie Angell (17) from Southwell, Notts, who was diagnosed with leukaemia age 13 said:

“At the start of my diagnosis a friend made a comment about palm oil, saying that I got cancer because had previously eaten Nutella. Looking back, it seems absurd, and it came from a lack of understanding, they didn’t know that childhood cancers are very rarely lifestyle induced. Another time a peer at school said that I got cancer because I didn’t believe in God. I felt blamed for something out of my control. Everyone has different beliefs and are entitled to them; however, it is not appropriate to share insensitive views like this.”

3. Talk about our wigs or about how our appearance has changed

Your appearance can be affected by cancer treatment – you might lose hair and wear a wig, have scarring or lose or gain a lot of weight. It isn’t helpful to have any of this pointed out. 

Amy Curran (23) from Downpatrick who was diagnosed with Hodgkin Lymphoma at 20 said:

“One thing that was said to me and was quite personally upsetting was ‘Is that a wig?’ Or ’Has your own hair grown back yet?’ For most people going though treatment losing hair is an extremely distressing side effect. I have even experienced people saying, ’Take your wig off and let us see what length your real hair is!’ My advice would be, just don’t mention it unless the person wearing a wig mentions it to you. It’s hard enough dealing with having no control of what side effects your treatment may be causing without having to worry about the extra pressure of your appearance.”

Maddy added: “People would ask if I’d lost or gained weight and I even had people ask if they could try my wig on.”

4. Tell us that we’re brave

Some said that ‘fighting’ language around cancer could feel isolating.

Katie Anderson from Glasgow, diagnosed twice aged 24 and 25 said:

“’You’re so brave’. ’You’re a champion’. ‘Let’s fight this!’ Language that centred on bravery made me feel isolated. Those comments seemed like projections of what people wanted for me – a way to dress my circumstances up nicely and make them more palatable – rather than connecting with how I really felt. Cancer isn’t a battle, it’s an illness that requires immediate treatment. I didn’t need motivation in order to force myself through it, and I didn’t feel like celebrating myself for making the obvious decision to get treatment. I couldn’t view that as impressive at the time, and I didn’t find it helpful when people told me I was doing something impressive.”

5. Nothing at all 

Some found friends ceased contact and disappeared during their treatment.

In a Teenage Cancer Trust survey* of young people, over half (55%) found that during their treatment some of their friends didn’t contact them as much anymore, and over a third (40%) found that some of their friends stopped contacting them completely.  Nearly half (49%) felt it was because their friends felt awkward about their cancer and didn’t know how to react or what to say.

Joshua Stedford (23) from Croydon who was diagnosed with leukaemia aged 15 said:

“It’s a tough one. Some friends really did have my back as I went through treatment, whilst others stopped talking to me or simply drifted away.

“I was between 15 - 18 when treated, so immaturity was a bit of a factor.

“But some factors can affect adults going through treatment too, from selfishness, to not knowing how to talk about the situation (i.e: awkwardness), the nature of certain friendships changing, and of course, ‘people who don’t like hospitals’.

“However, the experience does highlight which friends are there for the long term and which are not, so that comes with its own reward.”

Harvey Burnett (28) from Kingston in Surrey who was diagnosed with a sarcoma aged 23 and 28 adds:

“Having been through treatment twice at the ages of 23 and 28, I have had my fair share of messages in support which I am grateful for, but also plenty of people who also went missing during these times.”

Alongside the tips about what to avoid saying, in a bid to improve the situation of other people going through cancer, the young people involved have also worked with Teenage Cancer Trust to put together a list of the things people said or did during that treatment that made a difference, which can be found on the Teenage Cancer Trust website: www.teenagecancertrust.org/say

Amy Harding, Director of Services, Teenage Cancer Trust, said:

“People can feel awkward talking about cancer and blurting out the wrong thing but it’s so important to stay in touch.   

“If you’re struggling to find the right words to talk to a friend, loved one or colleague with cancer, please take a minute to look at the brilliant tips that the young people we support have shared on our website about the most helpful and positive things people said or did when they were at their lowest.

“From simple things like staying connected by sending messages or asking someone if they want to talk– we shouldn’t underestimate how much the little things we say or do can make a difference to people going through a tough time.”

Visit www.teenagecancertrust.org/say for further information.

ENDS

Notes to editors

For more information, contact Claire Monger, PR and Media Manager at Teenage Cancer Trust on [email protected] / 07522 956 697.

Photos:

Photos of all young people quoted in the release available on request.

Interviews:

Interviews are available with Teenage Cancer Trust’s Director of Services Amy Harding and the following young people referenced in the release – Chloe, Jordan, Sophie, Amy, Joshua. 

Citation for research in release:

*A total of 121 young people with cancer took part in the research referenced in the press release, an online survey that was live between March and April 2021.

About Teenage Cancer Trust

• Every day, seven young people in the UK aged 13 to 24 hear the words “you have cancer”. 
• Teenage Cancer Trust puts young people in the best possible place, physically, mentally and emotionally, for their cancer treatment and beyond. 
• We do it through our expert nurses, support teams, and hospital units. And we’re the only UK charity dedicated to providing this specialised nursing care and support. 
• Teenage Cancer Trust is a registered charity: 1062559 (England & Wales), SC039757 (Scotland).