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MumsnetGuestPosts (MNHQ) Tue 09-Aug-16 15:04:36

Guest post: "If doctors had listened to my son, he might still be here today"

Jane Sutton's son Stephen raised millions of pounds before his death in 2014. Now, she is helping Teenage Cancer Trust increase awareness of the warning signs of cancer in young people

Jane Sutton

Posted on: Tue 09-Aug-16 15:04:36

(23 comments )

Lead photo

"We thought the professionals knew better than us - but it turned out that wasn't the case."

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.

Despite all the 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.

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.

By Jane Sutton

Twitter: @_StephensStory

YoungGirlGrowingOld Thu 11-Aug-16 10:23:26

Hi Jane

Thank you for sharing Stephen's story with us. I remember being so touched by the brave way he faced his illness. I have also seen the press coverage of the charity fundraising you have done since his passing and I am sure that Stephen would be really proud that you are carrying on his legacy.

Educating GP's is so important. I am a fellow Lynch sufferer, but when I first went to my GP at 31 (much older than Stephen) I was treated in just the same dismissive way that he was and told I was too young. At one point, exasperated, I asked her to confirm that her advice was to ignore the pain, fever, diahorrea, weight loss and mucus I had been experiencing for months. Her reply was "you can worry about it if you like, but I'm not going to do anything about it". I was admitted to hospital 3 times before they investigated and even then I was told it was appendicitis right up until I woke up in HDU having had half of my colon and a third of my small bowel removed. Nobody apologized. They just shrugged and said "people your age don't get colon cancer". I have heard so many sad stories of young patients receiving absolutely shocking delays in treatment.

Happily, I have been healthy since finishing my chemo 10 years ago and I am expecting a baby boy (conceived after pre-implantation genetic testing for Lynch). Ironically, I have also married an oncologist! He has many lower GI patients who are under 30 including a small number of teenagers. His view is that "something" is causing the expansion in young people, whether it is increased prevalence of Lynch or something environmental, we don't know. I believe some research is being carried out at Leicester University but I have not seen anything reported officially.

Please keep fighting the good fight. It's so important that young sufferers are listened to and get prompt treatment.

Best wishes.

DangerQuakeRhinoSnake Thu 11-Aug-16 10:26:17

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 flowers

SukeyTakeItOffAgain Thu 11-Aug-16 16:06:42

Thank you for sharing, and I'm so sorry Stephen is no longer with you. He seemed like a very remarkable young man.

A re-education of GPs is definitely necessary! Well done for the work you are doing - your son would be proud.

I remember teaching two little twins whose mum died when they were two years old. She was 25 and had bowel cancer. She'd had to wait ages for a diagnosis too. It just seemed like the saddest thing.

Littleallovertheshop Thu 11-Aug-16 18:00:22

At 21 I was diagnosed with advanced ovarian cancer - whilst incredibly grateful to be alive, the long term effects caused by the treatment have changed my life. Pain, hearing loss, infertility and osteopenia could all have been avoided at least to an extent, had that doctor listened the first, not the sixth time I visited.
I've lost so many friends and met so many young people, including Stephen, who could have had a chance if their GP had just listened.
I can only hope raising awareness in the way Jane and TCT do will help ensure fewer young people have their cancer missed by GPs. Education is the only way things can change.

5moreminutes Thu 11-Aug-16 19:02:33

What a sad story, I had no idea his symptoms were ignored and his diagnosis delayed. You are doing brilliant work for the rest of us, and very brave to do so, thank you.

redannie118 Thu 11-Aug-16 19:18:44

My ds is was diagnosed with uterine cancer at 29. Her oncologist said she was the youngest person she had ever seen with the disease. She was consistently ignored by GPS and the hospital for 2 years and when she was bleeding so much all her hair fell out and she didn't have the strength to get out of bed the GPS response was "well what do you expect memail to do about it ?"at this point my mum said she would camp out in the waiting room until they agreed to give her a biopsy,which very reluctantly they did. She had to have a emergency hysterectomy after the cancer was found and now she will never have children. When told her GPS just shrugged and said "people your age don't get cancer "no apology or anything

Sophierome Thu 11-Aug-16 19:50:41

I can so relate to your story. Very sorry for the loss of your bright young boy. Stephen has achieved more than most people do in their lives. My story is different from yours but I am suffering because of the negligence of doctors. I had all the symptoms of a stroke a few days after child birth. But the doctors kept on telling me I was a mystery case for them. It breaks my heart every time I think about it. Life is so hard. Although I miraculously survived but I have multiple seizures a day. I causes me great frustration that the doctors delayed it until the clot burst in the brain. It is just so sad that the doctors just don't listen to what you tell them. They just ignore.

travellinghopefully12 Thu 11-Aug-16 19:56:12

Hello,

My brother suffered fatal misdiagnosis. When he went to A & E unable to see, stumbling round with an appalling headache they sent him away, as it was a student town (he studied there, yes) and he was nineteen, so they assumed he was drunk.

It's the most galling thing. x

MrsDeVere Thu 11-Aug-16 20:01:48

Message withdrawn at poster's request.

toldmywrath Thu 11-Aug-16 20:03:35

Thank you, Jane, for sharing Stephen's story- what a remarkable young man. Let us hope that GPs sit up & take notice.

Sorry for your loss. x

toldmywrath Thu 11-Aug-16 20:08:49

My message crossed post with you MrsDeVere flowers

Sophierome Thu 11-Aug-16 20:24:46

That's the saddest part of a young person being in A&E. They assume you are drunk and give you nasty looks. Post my stroke every time I went to A&E I had the same experience.

KatieHopkinsAteMyHamster99 Thu 11-Aug-16 21:31:16

So sorry to hear this. My DD age 5 was recently referred for investigations due to unexplained leg pain(not same I know). The paediatrician said that children often don't present with "typical" symptoms that adults would have-so they have to be really careful to rule out all causes. DD is ok (as far as we know) but the team went to some lengths to rule out rare but serious causes. I'm really sorry to hear that others have not been as thoroughly checked out

5moreminutes Thu 11-Aug-16 21:37:25

KatieHopkinsAteMyHamster99 what tests did they do?

My 5 yo has had leg pains for a couple of months - he's had a finger prick blood test (which I think only shows elevated white cell count) which was normal, and x-rays which were too, so we were prescribed an anti inflammatory cream and sent on our way... Did your DD have further blood tests?

sorry to go off on a tangent.

MrsDeVere Thu 11-Aug-16 21:48:46

Message withdrawn at poster's request.

5moreminutes Thu 11-Aug-16 21:54:26

Thanks MrsDeVere flowers

Gallievans Thu 11-Aug-16 22:58:43

Mrsdevere so, so sorry for your loss. And Jane, thank you for all the hard work you are doing.

We've been lucky (ish) with DD. Back pain, fainting spells& tired. Our GPs were ace. Started along the lines of 'well, it's not likely to be serious but let's just make sure' - so sent for bloods, x-rays and other checks. Showed up anaemia ( not unusual in a slim, athletic teen, just started periods and refusing to eat anyrhing but pot noodle!) but the x-rays revealed a misaligned pelvis. Which the local a&e had missed three years previously. She's now having physio to fix it so she can pursue her dream of an RAF career but without our amazing GPs it could have gone on for years.

Makes you value the good ones when you find them

minmooch Fri 12-Aug-16 06:37:00

Thank you Jane for sharing Stephen's story with us. I too was slightly obsessed. My son died aged 18 from a malignant brain tumour in 2914. I hoped and prayed that your boy would be afforded a miracle. But like my son and so many others he didn't.

My cousin had had a brain tumour and we have bowel and ovarian cancer in our family. I had an amazing gp so after a visit on the Thursday showed up nothing and blood tests came back clear on Monday when I rang her on the Tuesdsy morning and said I was taking Will to A&E she took me very seriously. A brief chat over worsening symptoms and she rang ahead and had the neuro team waiting on standby for us. He was diagnosed that day with a large brain tumour. He underwent an 11 hour up on the Thursday morning as he would not have survived the weekend otherwise. I suppose we were lucky that he was only 15 at the time and his symptoms could not be dismissed as alcohol induced. He still died 27 months later. His treatment plan has since been stopped for children as it is too harsh and the statistics don't stack up in favour of terrible side effects/those that survive. The what ifs are very hard to live with.

Your strength to keep raising awareness is admirable. Xx

MargaretRiver Fri 12-Aug-16 11:38:25

Jane I am so sorry for your loss
Unfortunately I have heard very similar stories about fobbing off over many years
I wonder if the stats are even collected about delays due to misdiagnosis at the GPs
Maybe Jane you could use the tremendous goodwill around your son's story to do a FOI request to find out if any stats are collected about first presentation at GP and first referral to appropriate specialists
If , as I suspect, this data is not collected, I think I would be very valuable to collect this data. I think it would be very educational for GPs, and could lead to earlier referrals, and more lives saved than by General awareness raising

Hellenbach Fri 12-Aug-16 13:55:51

My DH died in May from neuroendocrine cancer of the pancreas (NET). He visited his GP many times over a period of 6 months complaining of stomach pain, bloating and diarrhoea.
He was told it was IBS and later appendicitis.
He was not referred for tests.
He was diagnosed in A & E when he took himself there in agony.

Typically men do not visit their GP frequently. Shouldn't a GP with a young male patient repeatedly visiting make a referral??

Again we received no apology.

prettybird Fri 12-Aug-16 14:31:34

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. sad

Heaven help them if they'd come across some of the doctors here sadangry

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.

OanaChi Sat 13-Aug-16 12:03:04

Jane, I remember your son with fondness, as the day he passed, we were on the oncology ward with our baby son. Sadly, Georgie passed away too, a mere three months after Stephen.
We too were dismissed many times by our GP when we took our distressed son to the practice. He was only diagnosed when he started running fevers and stopped eating all together.
Stephen's legacy will live on forever, in the hearts of all those who have known him or heard his story.
But sadly, this does not bring comfort to a bereaved mother's heart, I know too well.
Much love you you.xx

Glitterbug76 Sat 13-Aug-16 14:52:29

Jane
Your son is a inspiration all over our country and the world, we lost my sister at 20 and it changes your life forever it woke me up to realise that material things don't matter and live each day to its fullest. Stephens legacy will live on in all our hearts I'm so sorry for your loss. My only hope is that your plight can effect some change and parents concerns are listioned to as no one knows their child better, I hope also that gp practices try to ensure that when children are seen on a regular basis that they get the same gp instead of starting again with a different gp who's not set eyes on the child before xxx

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