Bowel cancer patient diagnosed at just 29 gives up dream of being a mum – fearing she’ll pass on faulty gene that caused her disease
SHE never wanted dozens of kids nipping at her heels.
But Deborah Ward-Johnstone did dream of being a mum.
In her mid-30s, cancer stamped all over that life plan - forcing her to make the agonising decision to never have her own kids, to ensure a faulty gene that causes cancer "dies with her".
At 29 years old, Deborah was diagnosed with bowel cancer - after doctors repeatedly mistook the signs for stress, eating too many tomatoes, and a stomach ulcer.
She later learned the reason why she'd been hit by the disease so young - a faulty gene that causes Lynch syndrome.
People with Lynch syndrome are up to 80 per cent more likely to be diagnosed with bowel cancer.
It's inherited, meaning sufferers have a 50 per cent chance of passing on that "death sentence" to their kids.
And those with Lynch syndrome are much more likely to also develop ovarian cancer, stomach, womb, bladder and kidney tumours too.
The faulty gene that sends a sufferer's cancer risk sky high is to bowel cancer what the BRCA - or "Angelina Jolie" - gene is to ovarian and breast cancer.
For Deborah, whether to have kids was a decision she wrestled with, back and forth - she still does.
Having faced the agonising ordeal of cancer, she now lives her life with the "Grim Reaper" sitting on her shoulder - a constant reminder of another cancerous tumour just waiting to strike.
She refused to pass that legacy on to her own children - so vowed never to become a mum.
And to protect herself from both ovarian and womb cancer, at just 41 she has decided to have a full hysterectomy.
She told The Sun Online: "I still question if I am making the right decision, and change my mind every fortnight.
I couldn’t bring a baby into this world and risk them having the some Grim Reaper over their head. I couldn’t live with myself
Deborah Ward-Johnstone
"IVF and genetic screening was an option but only up until the age of 40, and I could try for a baby naturally now.
"But, I couldn't bring a baby into this world and risk them having the some Grim Reaper over their head.
"I couldn't live with myself. I wanted to be a mum, yes, but I wasn't desperate enough to take that risk.
"There are still times when I think it's not too late to have a go naturally, but it still comes back to, I can't do that to a little human. This ends with me.
"I feel like I'm not fulfilling my life, so it is hard. But, I look after the other kids in my life, my husband's children, my nephew and niece, and my godsons."
It was December 2005, just before jetting off on holiday to Australia, that Deborah first realised something wasn't right.
The self-confessed anti-gym bunny was dragging herself to the gym in preparation for a few weeks in a bikini.
But, just before Christmas she felt a pain in her side, like a pulled muscle.
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Thinking she'd just overdone it with the weights, Deborah, from East Malling in Kent, put it to the back of her mind.
When she got home, and the pain was still unbearable, she went to see her GP.
It was dismissed as being in her head, the result of stress.
Then came bouts of diarrhoea and constipation, and Deborah returned to her doctor.
This time she was told to check how much fibre she was getting in her diet.
Then came the weight loss, with Deborah dropping a dress size. And then in April 2006 Deborah first noticed blood in her stools.
But, her GP simply dismissed the telltale sign, telling Deborah she was probably eating too much tomato and liver - two things she didn't even eat.
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"I was getting really, really weak," she recalled. "When I ate, the pain was agony.
"I would have to get up and move, and now I realise it was the food passing the giant tumour growing inside me.
"I had pretty much every red flag symptom there is for bowel cancer.
"But the GP just kept pushing me back, giving me ulcer medication instead.
"In the end I was so poorly, it affected my mind, I felt weak of mind. I wasn't being listened to."
What is Lynch syndrome?
LYNCH syndrome is caused by a faulty gene, and increases a person's risk of bowel cancer by 80 per cent.
It's a genetic condition, passed through families and causes around 1,200 cases of bowel cancer in the UK every year - many under the age of 50.
There are thought to be around 175,000 Brits with Lynch syndrome.
But, only around five per cent know it, meaning more than 166,000 are living with Lynch syndrome but have no idea.
Every bowel cancer patient should be tested for Lynch syndrome when they are diagnosed.
The £200 test helps identify if brothers, sisters and kids of cancer patients are at risk as well.
Campaigner Stephen Sutton, who died from bowel cancer at the age of just 19, had Lynch syndrome.
Despite his dad facing bowel cancer twice, when Stephen went to doctors with symptoms when he was just 15, he was told he was too young.
By 17, he was told his cancer was terminal.
The teenager, who raised a staggering £5.5million, died in 2014.
Finally in August 2006, Deborah was referred to a specialist at hospital.
The doctor didn't even have to examine her to know there was something seriously wrong, Deborah recalled.
"Weirdly, I just remember being so relieved, he believed me," she said.
Waiting for a scan at hospital, her mum sitting next to her, Deborah looked up and saw a poster warning about the signs of bowel cancer.
In that moment, she said, she realised what was wrong with her.
After a scan, a colonoscopy - a camera inserted into the bowel - revealed a tumour invading her intestines.
"It was 6pm on a Friday in November, I remember it so well," the 41-year-old told The Sun Online.
"My doctor came out and told me and my parents there was a 'pretty big tumour in there', and that he was 'pretty sure it was cancer'."
Deborah's dad collapsed against the wall, her mum too shocked to even move.
But Deborah just asked for a piece of toast.
"I was relieved, I finally knew it had a name," she said. "I knew what it was, and finally I had a doctor that was going to do something about it."
When I ate, the pain was agony... now I realise it was the food passing the giant tumour growing inside me
Deborah Ward-Johnstone
Within weeks Deborah had surgery to remove the tumour, the diseased part of her bowel as well as part of her bladder, after the tumour ate through the wall of her intestines and latched on to her bladder.
Yet, she counts herself lucky.
She escaped the op without the need for a colostomy bag, and started six months of chemo soon afterwards.
"Having chemo was probably one of the best things for me, mentally," she said.
"It made sure we caught everything, and while life was put on hold for a year, at least I knew I could look back whatever the outcome and know I'd done everything I could to beat the disease."
It was 18 months after her diagnosis that doctors finally discovered why Deborah had developed the disease at such a young age.
Tests showed she carried the faulty gene that causes Lynch syndrome - and increases the risk of bowel cancer and other forms of the disease.
Deborah said: "I felt like the Grim Reaper was standing behind me, picking which cancer he was going to finish me off with.
"It was a real struggle to get my head around it. I drank a lot of whiskey."
Since treatment, and being given the all-clear at five years, Deborah said she's enjoying a "new lease of life".
She married her site manager husband Aaron, 45, after meeting him when he was part of the band that played at her end of chemo party.
Now, Deborah sees her Lynch diagnosis as a positive one.
It means she is regularly screened for various cancers, and medics keep a close eye on her condition.
"It's much better than not knowing," the events director added.
She supported calls from leading charities Bowel Cancer UK and Beating Bowel Cancer to improve testing for Lynch syndrome across NHS hospitals.
Yesterday, it emerged 8o per cent of hospitals fail to follow Nice guidelines to test all bowel cancer patients when they are diagnosed.
Deborah said: "Hearing that made me want to cry. It's a £200 test, just £200 and it could save lives.
"If hospitals are hard up, give people the chance to pay for it themselves, just tell them about it.
"It is so disappointing that Nice are saying hospitals should carry out this test, and they aren't.
"And it's not just patients' lives they are playing with, what about their kids, brothers and sisters - this is genetic, by testing one person you could save their family too.
"Surely preventing cancer outweighs treating it."
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