One of the greatest challenges facing potential Lynch syndrome carriers is not having advice on the implications of a pending test and a subsequent positive result.
Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”
One of the greatest challenges facing potential Lynch syndrome carriers is not having advice on the implications of a pending test and a subsequent positive result. Sometimes general practitioners, gastroenterologists and gynecologists will order tests for Lynch syndrome without truly understanding the emotional issues which follow such a diagnosis. Genetic testing without involving a genetic counselor can leave a patient feeling as though they are a “walking time bomb” and utterly hopeless.
In my opinion, many people may have wrong assumptions about what a genetic counselor does because of the term “counselor”–many think that seeing a genetic counselor is like going to a psychotherapist. This notion is incorrect–genetic counselors are a font of knowledge for those with hereditary cancer syndromes and can tremendously assist you through your arduous journey of dealing with a positive diagnosis.
Unlike doctors, genetic counselors have the time, training and the knowledge to discuss the implications of the syndrome. They can provide the patient with letters to distribute amongst family members who may also be at risk, can advise on prophylactic options and can provide referrals to doctors and medical institutions to help a patient get the care they deserve in order to remain healthy and live a long life.
In the United States alone, there are about 1,000,000 Lynch carriers, yet only 5 percent of them have been diagnosed. Additionally, it is believed that 5 percent of all colon cancers in the United States are the result of Lynch syndrome.
Lynch syndrome is not a rare syndrome - but it is definitely underdiagnosed.
If three or more of your relatives have had colorectal cancer, cancer of the endometrium, small intestine, ureter or renal pelvis, two or more successive generations have been affected, and one or more relatives have been diagnosed before the age of 50, then perhaps you should talk to your doctor about meeting with a genetic counselor. Genetic testing may save your life and the lives of many others within your family.
Please note! March is Colon Cancer Awareness Month
and on March 22, at 11:30 CST, I will be hosting a Tweet chat for colon cancer and hereditary colon cancer syndromes with Ellen Matloff and Amy Byer Shainman. We will have Dr. Allyson Ocean, an esteemed medical oncologist and attending physician in gastrointestinal oncology at The Jay Monahan Center for Gastrointestinal Health,
answering your questions about colon cancer. Please use the #Lschat for the Tweet chat.
This post is in memory of my brother Jimmy. He died from colon cancer due to Lynch syndrome.
Georgia Hurst, MA
President and Executive Director of ihavelynchsyndrome.com