If I hadn’t had the test, I would have carried that constant background worry with me forever.
Both of Anita’s grandmothers had had breast cancer, as well her mum, so she always had in the back of her mind that she too may develop breast cancer. When she experienced breast pain she was quick to go to the GP and get it checked out.
“I was so focused on my risk of getting breast cancer, that I hadn’t really considered any other type of cancer.”
Anita’s GP suggested she have a genetic test to explore her risk of breast cancer. It was while she was completing the forms that she started looking into her family history and asking questions. That was the first time she discovered that her cousin Theresa, Theresa’s brother, and both of Theresa’s daughters had tested positive for a genetic condition called Lynch Syndrome. People with Lynch Syndrome have a genetic variation which can significantly increase their chances of developing cancer, particularly bowel cancer and endometrial cancer.
“I’d never even heard of Lynch Syndrome. It was only when I started asking questions that Dad mentioned it.”
Anita was referred for genetic counselling where she talked through her options and learnt more about what the genetic test would involve. She was in the middle of a degree and so decided not to go ahead with the test at that particular time. She did, however, encourage her dad to get screened for Lynch Syndrome.
“I was 53 and had loads going on. I felt healthy and so I decided not to rush into the genetic testing. But then my brother was diagnosed with bowel cancer.”
Anita is one of six siblings and when her brother discovered he had bowel cancer aged 52 it made her think again.
“I told my cousin Theresa about my brother, and the first thing she said was Lynch. It got me thinking again so I rang up the genetic counsellor.”
All NHS patients with either bowel or endometrial cancer should now be screened for Lynch Syndrome, and Anita’s brother was automatically screened. He tested negative.
“Theresa encouraged me to get tested, and the genetic counsellor supported me through all my worries and endless questions. Theresa was so positive about the genomics process so I decided to go for it.”
Anita has two children, so getting tested for them was also important to her. A positive test would open up opportunities for regular screening, whereas a negative test would reassure her that the children couldn’t have inherited Lynch from her.
“I’m not sure I would have done it without Theresa’s positivity and her insistence that the Lynch diagnosis had given her so much power over her future.”
Apart from her brother, she was the first of the family to decide to get tested. It was an anxious time for them all.
“I was worried. I knew there was Lynch in the family so I knew my chances of having it were high. I worried about the impact not just on me, but the rest of my family too.”
Anita’s results came back negative. Her siblings and her dad are now also thinking about getting tested.
“If I hadn’t had the test, I would have carried that constant background worry with me forever. Obviously it doesn’t mean I won’t get cancer, but the worry is no longer at the forefront of my mind.”