Just after her 60th birthday, Karine Latter returned her national bowel screening test. Taking her only five minutes to complete, five days later Karine received a letter informing her that the test was positive. She was given an appointment to see a clinical nurse specialist to arrange a colonoscopy. Karine takes up the story below, in her own words...
"I wasn't unduly worried" continues Karine. "I felt well, if somewhat exhausted at times with some abdominal bloating.
Two years previously I had undergone a colonoscopy due to my family history of bowel cancer which was negative. My father had two separate bowel cancers, and my uncle died at age 46 years from bowel cancer.
In 2017, I asked my GP for a referral to the Genetics Family History Clinic at my local hospital (Nottingham University Hospitals). This is where my family history was investigated.
As my father had passed away, a sample from his stored tumour was tested and was suggestive of Lynch Syndrome variant MLH1.
"I was advised that, because my family did not meet the 3:2:1 criteria (3 members of the same family, across two generations with one diagnosed before the age of 50 years) they could not undertake any further testing.
I attended for my colonoscopy on 29 December 2019 and a large flat tumour was found in my colon.
Histology and CT scanning found it to be a stage two carcinoma. The next five weeks before my surgery were the worst of my life.
Lynch syndrome (LS) is a genetic condition that can increase the lifetime risk of bowel cancer to up to 80%. Lynch syndrome is estimated to cause around 3% of bowel cancer cases in the UK every year, many of them under the age of 50.
An estimated 175,000 people have LS in the UK, but fewer than 5% of individuals know they have the condition.
People affected by LS have a higher risk of developing colon cancer, rectal cancer, endometrial (womb) cancer and ovarian cancer.
And they have a slightly higher risk of developing stomach cancer, pancreatic cancer, small bowel cancer and ureter and renal pelvis cancer.
I was profoundly shocked when the diagnosis was given to myself and my husband. I could not believe it!
"Had the cancer spread? What was my prognosis? Did I have Lynch Syndrome?
Following testing of the tumour my bloods were sent off to test for Lynch Syndrome. Due to Covid, I waited five months for the results. During this time, I researched Lynch Syndrome and joined Lynch Syndrome UK (opens in a new tab) support group.
I was then seen by a genetic counsellor who gave me my diagnosis, information about Lynch Syndrome, referred me to gynaecology to discuss a risk reducing hysterectomy and gave me forms to send out to my immediate family to be referred for testing via their GP.
Thankfully my only child tested negative. One of my siblings tested negative and the other one has chosen not to be tested. My two cousins are in the process of being tested.
"Although I was devastated by both the cancer and Lynch Syndrome diagnosis, the reality is that I am now in the system and followed up regularly. In 2023 I underwent a radical hysterectomy to remove the risk of womb and ovarian cancer which is higher in Lynch Syndrome carriers.
The main messages from my experiences are:
- Send back your national bowel screening test.
- If you have a family history of bowel or female cancers, talk to your GP about a referral to genetics.
- Seek out information and support from Lynch Syndrome UK and Macmillan.
- Having a diagnosis means regular screening and follow-up to detect any cancers early.
