Doctors need to listen to young people more: they didn’t spot my cancer for a year

September is Childhood Cancer Awareness Month and Emily King-Dutton, a member of CLIC Sargent's Children and Young People’s Advisory Group, is blogging and speaking out in the media about her own experiences in support of our Better Care for Young Cancer Patients campaign

Here is her story in her own words.

Doctors need to listen to young people more: they didn’t spot my cancer for a year

Cancer in children and young people is quite rare, but is does happen.  It happened to me and it was horrible.  

It was a whole year before I was diagnosed and I think that if the doctors I saw had listened to me and taken my symptoms a bit more seriously that it would have been caught sooner.

I was about 11 when I started to get really bad stomach pains and aches – I always seemed to be ill.  From what I can remember (I’m 17 now) I went with my mum to the GPs surgery at least once a month for about a year to try and find out what was wrong.

I mostly saw different doctors there and each time I had to explain all my symptoms again.  I felt like they weren’t listening to me or my mum, and I felt like they palmed me off with antibiotics or painkillers each time, rather than investigating what was causing it. 

I had a lot of infections too and I was off school a lot.  The teachers were a bit suspicious about it all and I think they thought I was skiving, but I managed to keep up with my schoolwork.

My mum was really stressed out, she said that she had a nasty feeling that there was more to me being ill than there seemed.  In the meantime I was in increasing amounts of pain and getting more infections and I felt very confused, frustrated and upset about it all. 

Just before my 12th birthday my parents took me to A&E as the pain got too much.

The doctors there thought it might be a problem with my appendix and started to get me ready for surgery.  But at the last minute they spotted that there was not a problem with my appendix.

After that I was referred to a paediatric consultant at a hospital who said I might have a food allergy and they asked me to keep a food diary.  Obviously it made absolutely no difference.

In the end my mum went back to the GP and demanded to have a referral to a hospital in London instead. They did some tests and found a growth on my kidney.  I was referred to another hospital and a biopsy confirmed that I had a Wilms Tumour, cancer.

I wasn’t expecting it to be that serious and I went into total shock. 

I went straight on to chemotherapy treatment which was horrible.   Then I had an operation to have the tumour (and half the kidney) removed.

But after that they did tests and found it had spread further, which was really frightening, and I had to have my whole kidney removed. 

Thankfully I’ve been in remission for three years now and I’m now really involved with CLIC Sargent, a children and young people’s cancer support charity that has really helped me and my family through a lot of hard times.

September is Childhood Cancer Awareness Month and CLIC Sargent is campaigning for improved support and training for GPs, that could help them identify childhood cancer sooner.  They might only see one case in their whole career as it is quite rare, so I think any extra help and training is a great idea.

It’s all part of CLIC Sargent’s Better Care for Young Cancer Patients campaign which is recommending a lot of changes to the health and care system so that young cancer patients get the best possible care and support.  A big part of that is making sure that young people like me, and parents, have their voices heard by the NHS and government.

GPs and other medical professionals definitely need to listen to children and young person more.  I think that they find it easier talking to adults, and aren’t sure how to handle talking to young people or take them as seriously as adults.  

My advice would be that if you are worried about your health just listen to your body.  And if you feel something isn’t right don’t give up on getting somebody to listen to you!

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