When my son Stephen died on 14 May 2014 at the age of 19, his bucket list and Facebook blog, Stephen's Story, had caught the imagination of people around the world, and he had raised £3 million for Teenage Cancer Trust. Today, that total stands in excess of £5.6 million and continues to rise.
However, I hope his legacy will be more than just the money raised. I am continuing to support Teenage Cancer Trust to increase awareness of the main warning signs of cancer in young people - because if Stephen’s condition had been diagnosed earlier, the outcome could have been very different. Stephen may have been with us that little bit longer or possibly still here today.
Stephen had many of the 'red flag' symptoms of cancer: sudden and unexplained weight loss; a feeling of exhaustion; constipation and pain that wouldn't go away. In addition to this, there was a family history of hereditary bowel cancer.
Stephen's dad and aunt had bowel cancer at a much younger age than the norm. They had been identified as having Lynch Syndrome, a genetic condition whereby certain cancers are more likely to be diagnosed at a young age.
Despite all this evidence, Stephen's symptoms were dismissed as not being cancer-related. Instead, his illness was misdiagnosed as something much less serious - constipation. We were reassured there was nothing to worry about. He was "far too young" for it to be cancer, doctors said.
Out of frustration, and because of Stephen's deteriorating health, our next visit was to A&E. Sadly even then, Stephen's cancer was not diagnosed.
By now Stephen had every one of the symptoms associated with bowel cancer that were listed in the NHS information booklet about Lynch Syndrome. This was shown to the various consultants who came into contact with Stephen.
It took another four months of emergency visits back to that ward before Stephen underwent emergency surgery. The biopsy results revealed that Stephen had stage III colon cancer. It was only from this point onwards that he began to receive the appropriate treatment for his illness.
There's no doubt that misdiagnosis, and the five-month delay in treatment that Stephen encountered, led to a poorer prognosis and more intensive treatment.
Unfortunately, Stephen's story is not an isolated case. Research by Teenage Cancer Trust shows that one in four teenagers and young adults who visit a cancer specialist see their GP four times before being referred.
GPs are not looking for cancer in this age group; symptoms can be vague and ambiguous and the statistical likelihood of malignancy is extremely low. However, that is not a good enough reason to be so dismissive of young people when they finally pluck up the courage to go to the doctor.
Teenage Cancer Trust's education team delivers cancer awareness presentations to secondary schools across the UK, helping students to recognise cancer warning signs and risk factors. Educating young people gives them the confidence to speak up about their health issues and to question health professionals if they feel their concerns aren't being resolved.
In the education programme, fears about cancer are broken down; young people talk openly about the disease and share their knowledge with friends and family. Ultimately, young people are able to take greater control of their own health. This can lead to earlier diagnosis and prevent other young people from going through what Stephen did.
However, talking from experience, it's not only young people who need to be educated. Teenage Cancer Trust has recognised there are other audiences, including GPs and other health professionals that will benefit from an expansion of its education programme.
Stephen and I both felt that we were ignored when we raised our concerns. We thought the professionals knew better than us - but it turned out that was not the case.
I recently shared Stephen's story at Teenage Cancer Trust's Parliamentary reception. They are calling on NHS England and Public Health England to roll out a cancer education programme to all schools in the country. There's a long way to go, but this could change an entire generation's understanding of cancer and I'm excited to be part of this campaign.
As a parent, there is something you can do to make sure your child has access to cancer education. Get in touch with their school and urge them to book a Teenage Cancer Trust presentation. You can out more about the programme here.
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Guest post: "If doctors had listened to my son, he might still be here today"
MumsnetGuestPosts · 09/08/2016 15:04
Thank you for highlighting this. I knew of Stephen of course but I didn't realise there was such a delay in his diagnosis. I'm very sorry for your loss 
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It's so sad to read these stories.
My dad's side of the family has a gene that causes a really aggressive, very early onset breast and/or ovarian cancer. By the time it was identified, my granny was dead, but as she'd lived to 89, we were hopeful it had missed our branch of the family (as it strikes before 40 and sometimes before 30). Nevertheless, my dad was tested and was cleared, so I know I'm safe (at least from that particular gene). However his cousins weren't so lucky and it has decimated some branches of the family. 
Heaven help them if they'd come across some of the doctors here 
I like the idea of an FOI request to see if any stats are kept about early diagnosis failures. GPs, as the gateway to further investigation, need to be more aware.
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