Well, I guess I’m a bit of an oddball writing a blog in a colon cancer community, as a patient that has not had colon cancer! But that is why I am here, as a Previvor, with an 82% risk of colon cancer. I’m here in The WunderGlo Foundation as one of the voices for those with hereditary colon cancer syndromes.
With my tongue firmly in my cheek, I call myself a Mutant. (No colorectal cancer pun intended with my cheeky comment!) You see, I inherited not just one, but two hereditary cancer genetic mutations, two mutated Lynch Syndrome genes. We are definitely overachievers in my family. Why get just one mutation when you could really excel and have two, right?
Because I have a very loud voice when it comes to hereditary cancer and the genetic testing that saved my life, I can’t imagine that a single friend of mine has not heard of Lynch Syndrome. I don’t just travel around the country talking about hereditary cancer awareness, I talk about it everywhere. I don’t want a single person to continue walking around unknowingly with a genetic mutation that increases their risk of cancer. If my story could save another family from the 10 cancer deaths we’ve suffered from, I will shout it from the rooftops.
Because of my loud voice, I have had 3 separate friends reach out to me in the last couple months with “one of my friends was just diagnosed with Lynch Syndrome, would you be willing to talk with them, they are really scared/freaked out/overwhelmed.” Of course my answer is a resounding yes.
During these conversations with these newly diagnosed new friends of mine, I was reminded of how I felt when I was first diagnosed 10 years ago. I was so scared. I felt so alone. I had a million questions. And I didn’t have a cancer diagnosis and treatment in the midst of my news as did my 3 new friends. I was dealing with it as a Previvor. I can only imagine how much greater my fear would have been if I was dealing with cancer AND a mutation diagnosis. Not to mention how many more questions I would have had.
As important as it is to answer questions, my biggest goal is always to give hope and encouragement. When I first spoke today with my new friend, Stephanie, she was so thrilled when I told her I will be 60 this year! I will be 60 and I have NOT had cancer. My sister will be 61 this year and she is a cancer survivor. Stephanie was even more encouraged when I told her about my grandmother living to age 87, 50 years after her colon cancer at age 37. One of my greatest fears when I heard the news “you have a hereditary cancer mutation called Lynch Syndrome” was that I was receiving my death sentence. Well, ten years later, that has clearly not been the case. I have a friend that shares my mutation who always says, “we do NOT have a 100% risk of cancer!” She’s had two cancer diagnoses and shares my sister’s joy of being a survivor. When it comes to hereditary cancer syndromes, knowledge really is power. Because we know our risks, we have management and surveillance that either prevent cancers or helps cancer to be found in a very early stage . Everything changes! I’m so thankful that my “old” age and Previvor status can bring hope to others that have genetic cancer mutations. I’m so thankful that I am in a community of other mutants that keep me from feeling alone and encourage me and each other. I guess I now have the answer to my May blog post…the importance of community!
Diane M. Hardesty, Previvor