Generations of families like Caroline’s are being devastated by cancer because of an inherited, genetic condition called Lynch syndrome that dramatically increases the risk of cancer.
There are an estimated 175,000 people in the UK that share Caroline’s condition – but hardly any of them know they have it because people aren’t being tested. It’s vital they’re identified, so they can be regularly monitored to reduce their chance of dying from bowel cancer.
"I was diagnosed with bowel cancer when I was 49 years old and I was referred to a geneticist after I had chemotherapy, where I was diagnosed with Lynch syndrome.
Before I could have the genetic test, I had to see a genetic counsellor to make sure I fully understood what was happening and why. I waited seven months to see one. I don’t know why it took so long. At the appointment we discussed my family history and she said I most likely had Lynch syndrome. A blood sample was taken to confirm the diagnosis but I had to chase and chase to get the results. Eventually, after eight months my diagnosis was confirmed. In total, the whole process from referral to receiving my diagnosis took 15 months. Having bowel cancer is stressful enough and it’s not helpful having to chase healthcare professionals.
In the 3 years it took to diagnose me with bowel cancer, I was never asked once about my family history by any of the doctors who I saw. My oncologist was the first to mention the possibility of a genetic link at my first chemotherapy appointment. I was not advised of MMR testing either. Had this screening test been carried out at diagnosis of bowel cancer, perhaps I would’ve known sooner about my diagnosis of Lynch syndrome.
I feel very lucky to know I have the condition as it explains so much for my family. My mum died of ovarian cancer, her mum died of bowel cancer, my mum’s brother died from liver cancer, her sister died from ovarian cancer and her other brother died from lung cancer. Looking at my family tree and with my diagnosis of Lynch syndrome, the genetics team determined that they all had the genetic condition. My whole family has been devastated by cancer because of Lynch syndrome.
I’ve discussed my diagnosis with some family members and they are very keen to be tested. I also recently sent a copy of a letter sent to me, to my 12 first cousins on my mother’s side. The letter invites their GP to contact my genetics team for further information and informs them that a member of their family has been diagnosed with Lynch syndrome.
I could view it that I’m a ticking time cancer bomb but I choose not to and keep going. The way I look at it is that I’m now monitored closely and more importantly my girls, age 11 & 13, now have the knowledge not to have to go through what myself and others in the family have. They’re fully aware of Lynch syndrome and are being taught it’s nothing to be scared of but something that can be managed.
I went back to my GP and told him about Lynch syndrome, and in his 30 year career he had never heard of it. More information needs to be provided to healthcare professionals, so it’s not the patient informing them. I feel my experience could have been improved if healthcare professionals understood and knew about Lynch syndrome. I had to educate myself and them."
Our new findings reveal a worrying picture of delayed diagnosis, poor monitoring and unacceptable waiting times. A lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems.
The buck must stop with the UK’s health ministers – call on them to stop cancer devastating families like Caroline’s. Sign our petition