The Answer is Out There
It was early 2009 and Renee was fed up. As a fit and healthy newly wed, she was embarrassed to be visiting her GP almost every other day. But, deep down, the 31 year-old knew that something was up. When her GP dismissed her concerns – inexplicable tiredness and general lethargy – as psychological, the New South Wales-based communications manager voted with her feet. Within days, with the support of her new GP, Renee discovered that she had early stage bowel cancer, caught early enough to treat through surgery alone.
Now 38, Renee attributes her survival to her refusal to accept her original doctor’s excuses and to following her gut instincts. Had that GP only taken the time to take a family history, some alarm bells should have rung.
“My mum had uterine cancer at 37, my grandmother had it and my aunt died of it. I mentioned this to my first GP who seemed unaware that bowel and womb cancers can be connected through inherited gene mutations.”
Following surgery, Renee’s tumour was sent for immuno-histochemistry (IHC) testing and this signalled that she might be carrying a genetic mutation that puts her at risk of many cancers, from a young age.
“This was the first I’d heard of ‘Lynch syndrome’ and it was so scary. Not just for me but for my sister and other relatives. At that time, there was so little information available and most of the doctors were really poorly informed. You feel so very alone when you are first diagnosed.“
Today, with husband Darren at her side and two young children to care for, Renee is conscious of her responsibility to stay as well as she can, as long as she can.
“My new GP helps me plan and manage a surveillance regime that is full on.” Each year Renee has a colonoscopy, upper endoscopy, a pelvic ultrasound, endometrial sampling and several blood tests.
“Medical professionals here in Australia have concerns that endometrial sampling and trans-vaginal ultrasound are not foolproof or proven methods of screening. What they don’t understand of course is that these surveillance tests sometimes can and do work and cancer of the uterus is often detected in this way. ” Renee pauses to reflect.
“I am sure most people with Lynch syndrome understand that these tests aren’t foolproof but, for the moment, it’s the best we have, short of radical surgery.” And Renee is determined to do whatever it takes to stay well and detect any future problems early.
Much of this surveillance, especially the consultations with the specialists before tests take place, is not bulk-billed, nor is it covered by her private health insurance scheme, and Renee is very conscious of the cost of the screening to family budget.
“It is frustrating how much of these costs are out-of-pocket – usually between $500 and $1000 each year. Especially when surveillance means early diagnosis and treatment which of course is so much cheaper for the health service than expensive treatments for advanced stage cancer.”
But for Renee, arming herself against Lynch syndrome cancers is not just about careful medical surveillance. She has lost weight, drinks very little alcohol and tries to avoid unnecessary stress.
“Of course, stress is part of modern life for most of us but it is possible, through planning and sensible decision-making, to limit our exposure to it and keep our blood pressure down!”
Seven years after her bowel cancer diagnosis, Renee is a healthy and happy mother of two and insists that managing the risks of Lynch syndrome does not mean that it should rule your life. Despite her diagnosis, Renee has hardly missed a step.
“It really hasn’t stopped me from doing anything I had planned to do. I have travelled the world, had babies, pursued an interesting and challenging career. I have the same goals and aspirations as before. “ In fact, the healthy living changes made by Renee mean that she is better equipped that many others to do all of these things.
“Of course, every time I go for the tests, this is an anxious time. You just have to grit your teeth and make sure you tick the boxes every year.”
Lynch syndrome cancers are aggressive and develop quickly so annual screening is important for everyone and for Renee and her family, living with Lynch syndrome is about managing the risks, being vigilant and flatly refusing to take no for an answer.
“Mum is now 70 years old. Decades after her first cancer she is enjoying her retirement and her grandchildren.”
Renee would advise anyone who might be at risk to trust their instincts and listen to their own bodies. Faced with the possibility of a lifelong susceptibility to cancer, explains Renee, there are two types of people.
“There are those, like me, who want to know so that they can do something about it and there are those that just don’t. If this is the case in your family, all you can do is inform people of their risk, urge them to get tested and screened and, most importantly, lead by example. You just cannot be responsible for other people’s decisions. ” For many who grow up with a vague sense of unease that there are just too many cancers for one family, finding out about Lynch syndrome is often the first step towards coping. Renee concludes,
“In a way, there is a huge sense of relief in finally knowing. It really does put the power into your own hands. And then, it’s vital that we use that power and protect ourselves as best we can. ”