Julie Whitaker, South Yorkshire
My father was admitted to hospital, aged 68, with a perforated bowel. This was found to be bowel cancer. He had emergency surgery but died a few weeks later in hospital from complications. Two of his brothers died from bowel cancer previously, and they were in their 30’s.
Me and my three siblings began bowel screening some years ago, following appointments with the hereditary teams.
Many years later my nephew, on my father’s side, was diagnosed with stage 4 bowel cancer. He had a lot of treatment and is still alive now, some 10 years after his diagnosis.
Investigations showed that my nephew had Lynch syndrome. My siblings and I were all tested and all of us were positive for the gene. Our children were also tested, some negative and some positive.
Us, who now have Lynch syndrome, began to find out more about it and started our screening and preventative programmes. I'm a nurse with over 30 years’ experience in surgery, including colorectal, and my daughter is a GP. Between us, we advised and guided our positive family members through the various programmes. I had a preventative total hysterectomy and bilateral salpingo-oopherectomy in 2021.
In 2022, despite screening and preventative aspirin, I noticed a subtle change in my bowel movements. I wasn’t due a colonoscopy for six months but asked my GP to expedite the scope. I had a FIT test and as the result was less than 10, it was deemed that I did not meet the threshold for a colonoscopy. However, due to my professional knowledge, and my awareness of Lynch syndrome, I pushed and got my referral. A polyp was removed from my right transverse colon, and histology showed that it was an early adenoma. I had a right hemicolectomy a few months later but did not need any further treatment. I have the routine follow up checks and remain cancer free to date.
Following the diagnosis and subsequent treatment, I do suffer a little from ‘health anxiety’. This manifests in me worrying about symptoms that may have been more serious, and perhaps life threatening, than they probably were.
My message would be the quote from Sir Frances Bacon: ‘knowledge is power’
For me, having as much information as I could made me feel empowered and in control. This was important to me at a time when it can feel that as ‘patients’ we may have none.
