Hereditary Cancers Lynch Syndrome Support

Diane Hardesty, 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 56th birthday from gastric cancer, two years after surviving colon cancer.

I first learned about Lynch Syndrome in 2003 and I was diagnosed in 2007, thus unlocking the key to our “family cancer.” 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! At least 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 colon cancer at the young age of 31, the Wunder Project and the goal to cure colon cancer is of the 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 19th birthday. 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 I am given opportunities to tell our story.

Many families are very private about things like cancer and other medical conditions. They just don’t talk about these things. But having this information can mean the difference between life and death. Most families get together at times like Thanksgiving and other holidays to share a meal. As you go around the table and talk about what you are thankful for, why not start a conversation about your family’s medical history? Why not give each other the gift of life-saving information? What a blessing if you can go around the table and find out that your family is incredibly healthy. What a huge blessing if you can go around the table and discover that you have a hereditary cancer syndrome and knowing it could literally save the lives of some of those around that table! Give your family the gift of life this Thanksgiving! You can use this information to take a simple test at www.hereditarycancerquiz.com to find out your family’s cancer risk.

My family knew we had a “family cancer”. For a long time, we did not know that we actually have a hereditary cancer syndrome. It has a name and everything. Lynch Syndrome, aka Hereditary Non Polyposis Colon Cancer, aka HNPCC. I think we all knew it had to be hereditary. Five generations, thirteen people, twelve kinds of cancer, ten deaths, up to 6 kinds of cancer for just one person. We definitely knew we had a big problem with cancer.

Our predominant “family cancer” is colon cancer. My great grandmother had it. My grandmother had it. My aunt, uncle and mom had it. Then it hit my generation. My cousin lost his life to it at 31. Because we knew we had to look out for it, I was getting annual colonoscopies for years. I had my family cancer history. I showed it to every single doctor. I was afraid of getting cancer. 10 out of 13 people in my family died from cancer, and not just colon. We also had endometrial, skin, bladder, prostate, lung, gastric, pancreatic, breast, liver, salivary gland and worst of all brain cancer that heartbreakingly took my nephew’s life at 19.

Finally, after years of getting scoped, I showed my family history to my new GI doctor and she said, “I think your family has something called Hereditary Non Polyposis Colon Cancer.” What? The only word I really understood was the word hereditary. That rang true. She recommended I go to see a genetic counselor to learn more about it. I did not go. I did not want to find out I actually have what I considered at the time a genetic death sentence. I did not see any benefit to knowing I have something that had decimated my family. I was already getting scoped every year. My son was already getting scoped every year. We were “being careful”.

Three years in a row my new GI doctor asked me if I had gone to the genetic counselor. No. I had not. She finally said, “The reason I am scoping you every year is that we are assuming you have this. If you have it, we will continue doing what we are already doing to screen you. If you do not have it, we can stop scoping you every year.” Wow, why didn’t you say so? I can stop going through the annual prep and scope? Now, that would give me a reason to know this.

I went to the genetic counselor and was given a wonderful education about this thing called Lynch Syndrome. I was given statistics about the risks for someone with it. I was also given the reasons that knowing I have this would be a benefit. I found out that it was not a death sentence. That knowledge is power. That knowing I have this could actually save my life by helping me to find any cancers in the early stages. I could actually prevent cancer. Wow. If only I had known what a good thing knowing would be, I would have had the testing right away.

After hearing the benefits to finding out if I had this, I decided to move forward with testing for myself. I also took on the task of talking to my family about this thing that we all might have. I called each of my sisters on the phone and said, “hey you know how we have always thought that our “family cancer” is probably hereditary? I went to see a genetic counselor and learned all about what we probably have. The test to find out is really simple. We can either have a blood test, or a simple “swish and spit” test to see if we have inherited Lynch Syndrome.” I explained to each of them all that I had learned and that if we found out we have this it could be life-saving. I made other calls to Aunts, Uncles and Cousins. Not only did I tell them what I had learned, I asked detailed questions to get a better, more detailed, factual grasp on our family history. I made a five generation list of who had battled cancer, age of diagnosis, type of cancer and sadly in many cases, age of death. This was very helpful information for the genetic counselor to determine what kind of hereditary cancer we might have and to know what genetic mutations to test us for.

Fast forward, I have Lynch Syndrome. My son had a 50% risk of inheriting it from me. HE DID NOT, best news ever. I am one of four daughters. Two of us inherited it, two did not. We still have some family members that have not yet been tested.

Since finding out we have Lynch Syndrome we have had ZERO cancer deaths. I have personally had cancer found 6 times in the precancerous stage, before it ever had a chance to become cancer. I have proactively taken control of my medical destiny. I have had preventive surgery. My cousin that died so young has two daughters. One of them inherited Lynch Syndrome. She also had preventive surgery. We are all getting annual life-saving medical surveillance, more than just the colonoscopies we were previously having. We have been given the tools to prevent cancer and/or catch it in the early stages. What I originally thought of as a “death sentence” actually turned out to be a “life sentence”!

If you need support in making a decision regarding hereditary cancer testing, I am available via email at PrevivorDiane@gmail.com.

Find inspiration with Diane’s blog for Wunderglo