Lynch Syndrome – a personal story from our CAP member Autumn Tansey

My gratitude for the opportunity to have lived the last 7 years with Lynch Syndrome is never far from my mind.

It has been a rough and tumble to get here, and I would be kidding you if I told you that this is a hero’s story, or a classic tale of overcoming adversity.

If there is one thing that I have learnt, it’s that life isn’t a ‘12 step to success’ journey. And it most definitely isn’t that way when healing from cancer.

When studying the film ‘Gattaca’ in high school, I never once contemplated that in a few years time I would be applying the futuristic themes to my own life.

At the age of 22, I was diagnosed with bowel cancer and after a simple blood test discovered that I was missing a protective gene called MSH2. This falls under the name Lynch Syndrome, and increases my risk of various cancers with bowel cancer and endometrial cancer being the most elevated risks in women.

Unusually however, it was not found to be passed on from either of my parents, which demonstrates the importance of cancer research and gives me the green light to cheekily call myself a Teenage Mutant Ninja Turtle.

Living with Lynch Syndrome isn’t just about winning a battle, or being cancer free. The reason this isn’t a hero’s story is because I am not invincible.

However, as more research is developed, I choose to make informed choices to reduce my risks including minimising red meat and processed food consumption, not drinking alcohol or smoking, taking low dose aspirin daily, having yearly colonoscopies, 6 monthly blood tests, routine gynaecological surveillance, eating nutritious food, exercising and practicing relaxation.

My deepest gratitude goes to my healthcare team of doctors, nurses, psychologists, naturopaths, complementary therapists, and family and friends who have literally returned my life to me and continue to keep my health in check.

These people and my experiences within the realm of treatment and surveillance have since compelled me to join the Consumer Advisory Panel of the GI Cancer Institute.

Whilst I am regularly reminded of the possibility of another cancer diagnoses, I do not know what tomorrow may bring. Nobody knows, and so I sit in gratitude for today and this messy, wonderful life. My hope is that my experience will in some small way contribute to improving the treatments and surveillance options available for cancer patients and their loved ones.

Autumn Tansey – Consumer Advisory Panel (CAP) Member | GI Cancer Institute

What is Lynch Syndrome?

Lynch syndrome is caused by a mutation in one of the body’s mismatch repair (MMR) genes. These genes are: MLH1, MSH2, MSH6, and PMS2.

Normally, a person will inherit two working copies of these genes, one from their mother and one from their father. When working correctly, these genes work by repairing the mistakes that can occur when DNA is copied in preparation for cell division. In Lynch syndrome however, a person inherits one working copy and one non-working copy of one of these genes. When non-working MMR genes fail to repair these mistakes in DNA, errors accumulate, which may lead to uncontrolled growth of cells and eventually, cancer.

Lynch Syndrome gives people an increased chance of developing certain cancers across their lifetime, often at a younger age than the general population (i.e. before 50 years of age).

These cancers include, but are not limited to:

  • Bowel (Colorectal) cancer*
  • Endometrial cancer (lining of the uterus)*
  • Stomach cancer
  • Small bowel cancer
  • Hepatobiliary cancer (liver/gallbladder)
  • Pancreatic cancer
  • Ovarian cancer
  • Breast cancer
  • Urinary tract & Kidney cancers
  • Brain cancer
  • Skin (sebaceous adenoma, sebaceous epithelioma, or sebaceous carcinoma and keratoacanthoma)

 *Most common cancers associated with Lynch syndrome.

The GI Cancer Institute extends its thanks and gratitude to Autumn for sharing her story.