Wenona Johnson

Cancer Survivor & Advocate Extraordinaire

I’m a 3x cancer survivor with Lynch Syndrome who never wanted cancer, but having it made me realize just how important my voice can be as an advocate! 

If you ask people about hereditary cancer, many can tell you that they’ve been screened and that their family regularly talks about the health conditions of family members. However, this was not the case for my family. 

It wasn’t until I was diagnosed with stage 3b colorectal cancer, that my aunt told me my grandfather had died from colorectal cancer at the age of 38. This was alarming to me and at the same time a little too late, as my doctor also informed me that I’d probably had it for 15 years! 

Counting back 15 years from when I was diagnosed meant that I was 30 years old when cancer began growing unchecked. Even to my untrained ears, it sounded like familial cancer to me. 

In 2016, I completed genetic testing, which identified MSH2 c.2502_2508del (also known as 2502del7). I was positive for Lynch Syndrome. I believe this information saved my life and continues to up to this day. 

While I wasn’t surprised that I had a genetic mutation, I was surprised that the report stated that I also had up to a 60% chance of getting endometrial cancer. After talking with my doctors, I decided to have a total hysterectomy, only to learn after a biopsy that I’d had stage 1A endometrial cancer. 

This was a true wake-up call for me. I now understood that I would probably be exposed to a lifetime of cancers, but I felt confident I could stay one step ahead with regular follow-ups with my doctors.

I’ve been the primary communicator about genetic testing in my family. It is a fact that if you have a family history of colorectal polyps or cancer, you and your family members have a higher risk of getting colorectal cancer. I know this fact very well, as I have a younger brother who was also diagnosed with colorectal cancer. 

I know this fact very well, as I have a younger brother who was also diagnosed with colorectal cancer. While I’ve encouraged him and other family members to get genetic testing, some have decided to have screening done later or not at all.

As a mother, it’s been very difficult to see children either not react or react very slowly to information that is important for their health. I’ve come to understand that they are adults and must make their own decisions – I’m still very near for support, and I continue to encourage them about making healthy choices.   

The benefits outweigh the risk when it comes to cancer screening; however, it’s imperative that you also prepare and plan to share this life-changing information with your family. As a patient advocate, I have firsthand knowledge about the importance of genetic testing, yet feel helpless as members of my own family refuse to test. Knowing that such a silent, deadly cancer lurks in my family genes fires off my passion to stay persistent in sharing my story, sharing the importance of screening, and finally staying one step ahead of a cancer diagnosis

I continue to use social media, texting, emails, brochures, and pamphlets to get the word out about how beneficial genetic testing is. I’ve become involved with ConnectMyVariant because it is another tool that I can use to keep my family aware of the risk they may have.   

Sharing my cancer story with others and with my family members has proven to be therapeutic for me and lifesaving knowledge for my children and grandchildren. Knowing your family's medical history will determine whether hereditary cancer affects your family. As a person identified with a higher risk for cancer in my future, I’m taking all the necessary steps to needed to fully understand this hereditary path. 

This means aligning and communicating with my healthcare providers about my health, researching the latest treatments options and of course staying in close touch with my family. Maybe if I find others with my variant using ConnectMyVariant, their stories will help more people in my family understand the importance of genetic screening. It has proven to be of major importance to me.

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