Laura Palmer-Hukins, 36, lives in Pocklington, East Yorkshire with husband David, 37, and daughters Minnie, six, and Etta, four. After discovering in 2019 she carried a high-risk cancer gene, known as Lynch syndrome, she decided to have her womb and ovaries removed.
Lynch is estimated to cause 1,200 cases of bowel cancer in the UK each year, many in people under the age of 50. Despite one in 125 people potentially being carriers of a Lynch syndrome mutation, only 5% of carriers know about it, along with one in six GPs.
Women with the gene can have checks on their womb and ovaries, IVF to prevent passing the gene on and an elective hysterectomy.
Here, Laura tells her story…
“Watching my daughters playing together, I felt a lump rise in my throat. They were my pride and joy and I loved every moment of seeing them grow up. But I was terrified that this privilege might be snatched away from me, leaving two little girls without a mother.
After losing my dad Terry to bowel cancer just three days before Christmas 2018, I discovered a few months later that I’d inherited a genetic mutation from him that put me at a higher risk of also developing the disease.
Known as Lynch syndrome, carriers have as much as an 80% greater chance of developing bowel cancer, often at a young age. It also increases the risk of a number of other cancers, and as a woman, this meant ovarian and womb cancer.
I was carrying the particularly high risk MSH2 gene, and there was a 50-50 chance that my girls, Minnie and Etta, had inherited it.
The statistics were terrifying, especially after seeing the pain my father had endured. But as hard as it was, I felt empowered to know that I carried this time bomb inside me.
We only found out Dad was a carrier of the mutation when it was too late, despite losing his own father to the disease. He was only 62 when he died. I pondered how things might have been different and how he might have survived had he been tested earlier.
‘My body could betray me’
Now I knew what I potentially faced, I knew I could have regular colonoscopies to detect any changes in my bowel and have screenings for endometrial cancers. But that didn’t feel like enough.
“I don’t want to miss a moment with my family,” I told my partner David. “I feel like my body could betray me any day.”
So in May 2019, at the age of 32, I told the doctors I wanted to be put on the waiting list for a hysterectomy.
“You’re still very young,” my consultant said. “We normally wait until Lynch carriers are in their forties.”
“I can’t wait that long,” I said. “I’ve had my children – I need to be alive for them.”
For the next two years, I lived with worry in the back of my mind, not knowing what the next test would show or if the call would come.
In February 2020, David and I got married, partly inspired by the fact that life could be short and we didn’t want to wait. It was fortunate timing as the pandemic hit shortly afterwards and I knew my chances of having elective surgery were significantly delayed. Even my screenings were postponed. I tried to carry on as normally as possible, throwing myself into fundraising for research into Lynch syndrome.
Finally, in November 2021, a call came from the hospital – I had a date for my operation. I’d been waiting so long but I had mixed feelings. My surgery came with risks and if things went wrong, would my girls be left without a mum anyway?
That Christmas was especially poignant as I inevitably mourned Dad while worrying that it could be my last one with my family. I also fretted about the recovery.
I’d be pushed into a medical menopause at 34 and would need a long time off my new job as a quality manager. But the alternative wasn’t worth thinking about.
A few days before my surgery, I sat Minnie and Etta down, to try to explain. “Mummy isn’t poorly but has something in her tummy that might make her poorly,” I said gently.“So the doctors are going to take it out and I’ll need to stay in bed for a little while.”
On 19 January 2022, I went to York Hospital, a bag of nerves. David wasn’t allowed in with me due to Covid restrictions. At 4.30pm, I was taken down for the hour-long operation that could save my life. Surgeons gave me a full hysterectomy, removing my womb, cervix, ovaries and fallopian tubes through keyhole surgery.
Difficult recovery
When I woke up, I was sore and groggy – but I felt the biggest sense of euphoria and relief. After two days, I was allowed home, taking a prescription for HRT after I pushed firmly for it. The recovery took time and I found it frustrating, as I was used to being so active and busy. It was lonely too, being at home and going through menopause symptoms like brain fog at such a young age.
But more than a year on, I have no regrets, especially after following the story of Bowel Babe Dame Deborah James [who died from bowel cancer in June 2022] . It broke my heart to know she wouldn’t see her two children as grown-ups and I held my girls extra tightly that day.
Of course, there are still risks for me and I could develop bowel cancer, but I’m ensuring I do all I can to lessen the chances and the hysterectomy has lifted a weight off my shoulders. I also want to educate people about Lynch syndrome and how they can ask for a screening if they have any family history of the disease.
Don’t be afraid of what you might find. Knowledge is power. We mustn’t be scared to talk about poo and gynaecological issues – overcoming embarrassment could save your life.”
Find out more at bowelcanceruk.org.uk and lynch-syndrome-uk.org
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