I’ve been asked to write a blog about my experiences as a hereditary cancer awareness advocate and patient speaker.  The hardest part, for me, isn’t NOT knowing what to say.  It’s having too much to say and not knowing how to edit myself.  It’s being AFRAID of saying the wrong thing.  Or not saying enough.  Or saying too much.  Which makes me think about FEAR and how it can keep us from making wise decisions.  

My husband has been trying to convince me to write for years.  I think I’ve allowed fear to keep me from writing.  This is me moving past that fear.  

So, my first blog is going to be about fear. Several years ago, when my GI doctor told me to go to a Genetic Counselor because she thought I might have a hereditary cancer syndrome, Lynch Syndrome, I didn’t follow her counsel.  I didn’t go.  I was paralyzed by fear.  

My family had been through many great and tragic losses because of several cancers.  At the time of my doctor’s referral to the Genetic Counselor,  my beautiful 19 year old nephew had just gone to heaven after 2 1/2 years of fighting brain cancer and my heart was broken.  My mom had died at 56, my aunt at 58, and my dear cousin had died at 31 of colon cancer, a very preventable cancer.  When my doctor told me to go and see a Genetic Counselor to find out if I had a hereditary cancer syndrome,  fear caused me to hear her say “go to the Genetic Counselor to get your death sentence.” 

In my mind, if it actually was this  awful thing called Lynch Syndrome that was killing my family, I didn’t want to know I had it.  People in my family got cancer and died.  I was already having annual colonoscopies.  I was fighting hard against this thing that was killing my family.  But I didn’t want my death sentence.  Fear.  I was even more afraid I could have it and have unknowingly passed it on to my son.  Much greater fear.  I was also fighting hard for him.  He had his first colonoscopy at 21.  Happy birthday, you get a colonoscopy Chris!

Every year for 3 years my doctor asked me if I had gone to the Genetic Counselor yet.  Every year I said no.  After 3 years she told me she had to know whether it was Lynch Syndrome to properly medically manage me as my doctor.  She told me that if I have Lynch Syndrome, we would keep doing what we were already  doing…annual colonoscopies and upper endoscopic exams to try to prevent colon and gastric cancers or catch them in the early stages.  She also told me that if I did NOT have Lynch Syndrome, she would stop scoping me every year. Wait…after over ten years worth of annual colonoscopies I’m being told I might be able to stop?!?! Wow! Now that would be a very good reason to go to the Genetic Counselor.  I went. 

The best way to combat fear is to replace it with hope.  Hope in my case was brought about by an education about what Lynch Syndrome is and why genetic testing was important.  When I FINALLY went to the Genetic Counselor, I learned that most of the cancers I was at risk for with Lynch Syndrome are PREVENTABLE (a favorite word) cancers. I learned that KNOWING could give me and my medical providers the tools to either prevent cancer or catch it in an early stage. I learned that KNOWING could actually save my life.  It could also save my son’s life.  Fear, replaced by hope because of information. Because of truth.  

Yes, I got tested. Yes, I have Lynch Syndrome.  Yes, I have an 82% risk of colon cancer.  But, because I know I have it, I have annual surveillance.  By my last count, I’ve had over 40 scopes. Because of my surveillance, my doctors have removed precancerous polyps and tissue 6 times.  6 times that I would have had cancer and didn’t.  Fear replaced by hope, replaced by LIFE.  

Chris did NOT inherit this.  Let me repeat that…my only child, my son that started colonoscopies at 21, does NOT have Lynch Syndrome!!!! That also means my grandchildren cannot inherit it. Fear replaced by joy and rejoicing.  

If you have a hereditary cancer syndrome, you HAVE it.  You were born with it.  I was afraid of the wrong thing.  What I really should have been afraid of was having a hereditary cancer syndrome and NOT KNOWING!!! Knowing saves lives.  

A huge percentage of patients that are referred to Genetic Counselors by their doctors for hereditary cancer genetic testing do not go.  I was one of them. When I was given the facts about hereditary cancer syndromes, when I was told that knowing could save my life, my fear of a death sentence was replaced by hope.  In truth, my imagined death sentence has in fact been a life sentence.  Before we knew we had Lynch Syndrome, there were 10 cancer deaths in our family.  Since our diagnosis through genetic testing, there have been ZERO cancer deaths in our family.

Fear replaced by hope.  Death replaced by life.  

Diane M. Hardesty, Previvor