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Living with Lynch Syndrome

August 24, 2020

Living with Lynch Syndrome

By Alice Christensen

I have a strong family history of multiple cancers on both sides of the family. Cancer was our family disease and we all knew it. Yet, I thought if I lived a healthier life than my ancestors, I would not get cancer. Then my nephew was diagnosed with colorectal cancer when he was just 36. Everyone in our family was shocked that someone so young could have this diagnosis, yet we prayed for his successful treatment and moved on. 

One year later, I received the same diagnosis. I had colorectal cancer. Having had breast cancer twice before, I was no stranger to a cancer diagnosis. After my second breast cancer diagnosis, I had been tested for a BRCA mutation, which showed that I have a variant of unknown significance in one of my BRCA2 genes. At the time, I was not aware that there were different types of testing panels, and I was tested only for a BRCA mutation.

My colorectal cancer was my third primary cancer diagnosis in less than 10 years before I turned 60.

I have come a long way since the moment in 2015 when I read the words “Lynch-like qualities” on the pathology report. Both colorectal cancer surgeons I saw recommended that I have expanded genetic testing for a mutation other than BRCA because "it just wasn't normal" to have three different primary cancers in less than 10 years. With the assistance of “Dr. Google” in the months leading up to my appointment with a genetic counselor, I read voraciously about Lynch syndrome, an inherited condition that dramatically increases a person’s risk of developing colorectal and other cancers. Sure enough, genetic testing proved I have Lynch syndrome.

That same year, one of my brothers was diagnosed at age 50 with grade 4 glioblastoma, a rare type of brain tumor that cannot be cured. He also had genetic testing, which revealed that he had Lynch syndrome. Unfortunately, he passed away two years after his diagnosis. 

Talking to someone else with Lynch syndrome made a difference

My initial reaction to learning that I had Lynch syndrome was one of complete panic. I was convinced that I was dying. Even though I had been in the healthcare industry my entire life, I had never heard of Lynch syndrome, and I was angry that I knew nothing about it.

Convinced that I carried a death sentence, I became obsessed with finding someone with Lynch syndrome who was older than I was. After talking with someone with Lynch syndrome who was 13 years my senior, I knew I could survive. I began to think of my situation as a chronic disease, rather than a 911 emergency, and I learned to slow down. Only then did my initial fear and panic transform into a powerful fight for Lynch syndrome screening and advocacy. 

Talking to my children

I knew that I needed to be a rock for my children when I talked to them about genetic testing. I was not emotional or teary. I took a factual approach, and my family followed my lead. I feel somewhat guilty that I passed this mutation on to my children, but not a whole lot. I know I can’t control my genes, but I can support, educate and advocate for my adult children who have Lynch syndrome.

FORCE expands to help families with Lynch syndrome

FORCE has provided me with wonderful educational resources. The organization’s website is rich with up-to-date information. They have years of experience in the hereditary cancer advocacy arena. I believe FORCE's work to improve the lives of BRCA mutation families is needed for Lynch syndrome families and I am so glad to see the expansion of their mission to include families like mine. The ability to say someone is a previvor, instead of a survivor, is what motivates me to be involved with FORCE. I want to help support Lynch syndrome families, and working with FORCE is the best way to do that.

Knowledge is power in my book! Four years later, I am a breast and colon cancer survivor, as well as a proud champion for others with hereditary cancer.

Alice Christensen, Lynch Syndrome Breast and Colorectal Cancer Survivor

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Tags: Lynch Syndrome

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