Living with Lynch Syndrome
By Tammy Dale
I sit here in a coffee shop, waiting for my 23 year old daughter to finish her 1st annual colonoscopy. While that may seem odd, this is our “normal”.
I grew up very aware of cancer’s impact on my family. My grandmother had endometrial cancer and died at the age of 52. My father had colon, testicular, and finally lung cancer at the ages of 30, 40 and 52, respectively. Clearly there was something bad in our genes, but nothing publicly defined or labeled as a common link for cancer - until now.
About 15 years ago, a family member mentioned that we “may” have Lynch syndrome in our history and that it might explain the family cancers. I diligently passed that information to my doctor and she made a note. Looking back, it didn’t raise the appropriate flags with the doctor like I assumed it would. It was 8 years later at the age of 42, that I was diagnosed with endometrial cancer - 10 years earlier than my grandmother’s cancer was discovered. Upon diagnosis, I was told that I was too young and thin by all normal standards to have this cancer and they assured me it was caught early. As it turns out, it was Stage 3 cancer which meant it was advanced and; in addition to a full hysterectomy, I would also need chemo and radiation therapies. I am learning that this is a typical Lynch story. Those of us with the gene not only have a high risk of certain cancers but are also likely to get it at an earlier age than the “norm”.
I initiated testing for the Lynch gene toward the end of my treatments. If I had known more about Lynch or known that I had the gene, I am confident my cancer would have been caught sooner. While I beat one cancer, I knew there were others on the high risk list and I wanted to be able to fight what might still be to come. I also knew that if I had the gene, it would be important for my children and extended family to know as well. Tests confirmed I have Lynch and I actively shared this information with my siblings, aunts, uncles & cousins. I also had my children tested and the results confirmed that 1 of 2 has the gene.
My approach to living life with Lynch is simply to be proactive and take responsibility for my health and screenings. I team up with doctors who understand my high risk of Lynch related cancers and help me screen appropriately. In the past 8 years, I have had 8 colonoscopies, 16 pap smears & 8 skin checks in addition to the normal things every 50 year old should do. One might argue that I am having too many tests. However, the doctors have removed polyps and skin cancers that could grow faster and become more serious for me than someone without Lynch. I am lucky these things are taken care of.
Let’s be clear - I do not live life pessimistically due to the gene I inherited. In fact, I feel lucky to have the knowledge of my genes. It means I can be proactive for me as well as my family. Cancer can start 10 years sooner as it moves through the family tree, so I am thankful that I know how to guide my daughter. At 23, she isn’t as thankful as I am, but I hope over time she feels less a victim of her genes and starts to understand that at least she has an opportunity to be proactive for her future.
My message to everyone is to not only know your family history, but to understand it and share it. In the new world of ancestry and genetics, we have the tools to take control and influence our destiny. Lynch Syndrome was little known and thought to be rare. Through research and advocates like the Jacqueline Rush Foundation, we have already learned that the instance of Lynch is about two times what was thought just two years ago. And only 5% of those with it, know it. I urge you to know your history, learn from it and happily move forward with life.