Contributed by Beth Kornegay

After several months of bloody stools and constipation, Ally to Ally moderator Shannon Morock knew something wasn’t quite right with her body. Testing revealed cancer — and an important genetic condition.  

Cancer diagnosis

At the beginning of Shannon’s journey, doctors offered various reasons for her ailments, including internal hemorrhoids, irritable bowel syndrome, and possibly celiac disease. But the 44-year-old mom of two thought there could be a more sinister reason behind her symptoms.

When Shannon finally had a colonoscopy, the truth was revealed. Doctors found a mass that appeared to be colon cancer, which was later confirmed and determined to be stage IIa. 

Shannon endured 28 radiation treatments in hope that her tumor would shrink enough to allow for less-invasive surgery. Other than a few days, Shannon was able to work through her treatments and even took a trip to Disney World with her family at the end of 2019. On December 31, 2019, Shannon had 15 inches of her colon removed and was given an ileostomy.

Lynch syndrome diagnosis

After surgery, Shannon had four chemotherapy infusions in an effort to “mop up” the remaining cancer cells. During this time, another shock came: Genetic testing showed that Shannon was positive for Lynch syndrome.

Lynch syndrome an inherited condition that greatly increases a person’s risk for developing colorectal cancer. Lynch syndrome runs in families from one generation to the next and leads to the most common inherited form of colorectal cancer, also called hereditary non-polyposis colorectal cancer (HNPCC). In a family with a Lynch syndrome, each child has a 50% chance of becoming a Lynch syndrome patient.  

“That diagnosis was a low blow for me,” Shannon said. “I didn’t tell my husband or my mom until a month later. I had such a hard time and I saw that diagnosis as a death sentence.”

A visit to her oncologist helped Shannon see that a Lynch syndrome diagnosis was truly a gift — a gift of knowledge. Because of the diagnosis, Shannon’s doctors are now able to be proactive in testing to ensure that the cancer doesn’t come back. Also, her children will have colonoscopies beginning at age twenty to ensure they don’t develop colorectal cancer.  

Shannon’s oncologist explained that 95% of people who are Lynch positive don’t know — even when such knowledge could help protect their families. Shannon’s diagnosis has empowered her to establish a testing protocol to monitor and advocate for her health and the health of her family. 

Sharing her knowledge

Because she found advice from friends so valuable during her cancer journey, Shannon was driven to help others in the same way. She became a volunteer with the Colorectal Cancer Alliance and is now moderator for the Lynch syndrome group in Ally to Ally — the Alliance’s newest online community.

“I wanted to tell people what you can expect, which is sometimes the scariest thing because you aren’t sure what’s happening,” Shannon said. “The Ally to Ally community is a great platform for allies to seek advice, meet people, search groups, and get information.”

Shannon hopes that members of the Lynch syndrome group will get a better understanding of the disease through other members who have traveled in those same shoes. She also hopes that members will find comfort in the security of regular screening. For those that know how to monitor Lynch Syndrome, the future is bright and knowledge truly is power.

Learn more about Lynch syndrome here. 
 

This story is part of the Hereditary Cancer Awareness Campaign supported by Myriad. Learn more about the importance of family history and take your Hereditary Cancer Quiz to determine your hereditary cancer risk.