Wendy Greaves: "Three months later I received a positive diagnosis for Lynch syndrome"

Wendy was diagnosed with ovarian cancer aged 43. This combined with her family history of bowel cancer led to her specialist suggesting she be tested for Lynch syndrome. She shares her story.

"In early 2017 I started having some back pain. This gradually got worse over time and spread to my abdomen so I went to my GP. She referred me for an ultrasound, which I was told would be a six week wait. 

I didn’t connect the two at the time but I was also feeling very full after just a few mouthfuls of food.  The pain was getting so bad I couldn’t sleep or go to work. I remember going out for dinner for my daughter’s 18th birthday and sitting there in agony. My GP just told me I had to wait for my scan appointment and to keep taking paracetamol and codeine. 

One day I decided I’d had enough and went to A&E. They initially suspected kidney stones but after having scans and blood tests they told me I could possibly have ovarian cancer. They had found a 7cm ‘cyst’ on my left ovary.  A few weeks later I had keyhole surgery to remove the mass, which by this time had grown to 10cm. 

As suspected, I had stage 2C clear cell ovarian cancer. A week later I was back in hospital for debulking surgery. This was followed by six rounds of carbo/taxol chemotherapy. I am currently two years NED.

My gynaecologist was amazing. He knew I had two daughters and suggested I was referred for genetic counselling to make sure my girls were not at any risk. My father had bowel cancer when he was 38 and his father had died of bowel cancer aged 44. I always knew bowel issues were in my family but never would have connected it to ovarian cancer. Lynch syndrome was mentioned to me and I was asked if I wanted to be tested. Three months later I received a positive diagnosis for Lynch syndrome PMS2 & MLH1. Although initially, it felt like a death sentence, I now feel fortunate that I have this information. I also felt relieved that I knew why I had cancer. There was a reason for it, it wasn’t just bad luck. 

My immediate family were notified and they were all tested. As suspected I had inherited Lynch syndrome from my father (who is now 74 by the way and very healthy!). My daughters did not hesitate in getting tested. The heart-breaking day came when we discovered my eldest daughter, Danielle, also has Lynch syndrome. I felt so guilty. We have to look at the positives though. We will both have regular colonoscopies and Danielle will have regular gynaecology check-ups, with the choice of an elective hysterectomy after she has children. At least by me going through this I can hopefully protect my daughter from the same ordeal and protect future generations. 

Knowledge is power."

Worried about your family history? Use our Hereditary Cancer Risk Tool to assess your risk of having inherited a genetic mutation that could increase your risk of developing certain cancers. It's suitable for both men and women.