Guest Blogger Diane Hardesty, Previvor
Patient Speaker & Awareness Advocate for Lynch Syndrome & Other Hereditary Cancers
I am a wife, mother, stepmother, grandmother of 6, and great grandmother of 4. In addition to my 24 year income tax practice, I am a patient speaker and advocate for hereditary cancer awareness, in particular, Lynch Syndrome. I turned 56 in 2013. This was a significant milestone, because my mother died the day after her 56thbirthday from gastric cancer, two years after surviving colon cancer.
I first learned about Lynch Syndrome in 2003 and was diagnosed in 2007, thus unlocking the key to our “family cancer problem.” My first response in hearing about Lynch Syndrome was fear. I did not agree to have hereditary cancer testing for 3 years because I thought a positive result would be like getting handed a death sentence, having lost ten family members to cancer. I was greatly uninformed about the benefits of testing for me and my family. When my doctor finally explained the actual benefits of testing and that the results could be the opposite of a death sentence, I agreed to be tested. The thing is, if I had Lynch Syndrome, I was born with it, whether I knew I had it or not. Knowing changes everything. Instead of death sentence I feared, my positive results have been a life sentence!
I am thrilled to say I am a Previvor. It is a great word, describing someone that has a hereditary cancer mutation who has not had cancer. It is only possible because knowing I have a hereditary cancer syndrome gave me the opportunity for preventative surgery and allows me to have regular surveillance and cancer screening. I have been caught in the precancerous stage 6 times. I have not had cancer. That is 6 times I would have had cancer, but it was removed in the precancerous stage!
5 generations of my family have had cancer. 3 out of 4 of my grandmother’s children, and my grandmother herself, died of cancer. That is 4 cancer deaths in a family of 6. 13 members of my family have had at least one cancer. 4 have had multiple primary cancers. Only 3 are cancer survivors.
Our highest risk with Lynch Syndrome is colon cancer. With an 82% risk of colon cancer, we have had 7 family members with colon cancer. Having lost my cousin, Don, to preventable colon cancer at the young age of 31, hereditary cancer awareness and testing are of utmost importance to me.
The youngest family member with cancer was my nephew, Ricky, who was diagnosed at 16 with Glioblastoma (brain cancer), living just 2 weeks past his 19thbirthday. My mother died the day after her 56th birthday. She was in a great deal of pain on her birthday, but hung on for another day, telling her identical twin sister she didn’t want to ruin their birthday. My mother’s twin, Aunt Jeri, died 2 years later, after her 4th primary cancer. My grandmother had colon cancer at 37, as a young widow raising 4 children on her own. She lived 50 years with an ostomy. She and my nephew, Ricky, continue to be my biggest inspiration. My sister, one year older than me, has had multiple primary cancers, including colon cancer twice, skin cancer, endometrial cancer, and breast cancer. Cathy’s always been an overachiever and holds the family record for the most cancers battled!
I became a patient speaker and hereditary cancer advocate after a 2010 Myriad Genetics advocacy workshop. I have a huge passion for advocacy and telling my family’s story. I believe that undiagnosed families are like entire families standing on train tracks that don’t even know the train (full of mostly preventable cancers) is coming. Knowing you have a hereditary cancer syndrome can mean the difference between life and death. Prior to our diagnosis, we had 10 cancer deaths. Since we have been identified and tested, we have had ZERO cancer deaths.
In January 2011, my son received his genetic testing results. He did not inherit my genetic mutation. Because Chris did not inherit my mutation, his children cannot inherit it. This ends with me. I am a very thankful mother/grandmother. Others in my family have not been as blessed. With all I have been given, I want to “give back”. If even one family can be saved from the suffering that my family has endured, I am thankful for the opportunity to tell our story.