Susie Leonard Weller strongly backs a recent change to guidelines urging a first colonoscopy by age 45 to detect cancer. Her screening came too late.
Fifteen years ago, she had digestive issues at age 52 that couldn’t be explained, so her physician suggested the colon cancer screening. She hadn’t yet because the recommended age then was 50.
In May, national guidelines were adjusted to recommend the start of routine screening for colorectal cancer at 45 for adults at average risk of developing the disease. That baseline is lowered to age 40 if there’s family history of colon cancer. Just before Thanksgiving 2006, Weller’s first colonoscopy brought shocking news.
“A large, cancerous tumor had already blocked part of my colon,” Weller said.
“My son was a senior in high school and planned to pick me up to drive me home after the procedure. The doctor said, ‘No, I need to have your husband to pick you up,’ and the doctor’s showing on the screen how much of the cancer’s tumor was blocking.”
Weller later learned she also needed at least a temporary colostomy, but after months of treatment, that had to become permanent after radiation treatments’ effects on the colon. The colostomy surgery reroutes eliminating waste into an exterior bag for disposal.
Hereditary and medical risk factors for colorectal cancer include a personal or family history of colorectal cancer or adenomatous polyps, along with certain inherited genetic syndromes, a personal history of chronic inflammatory bowel disease and Type 2 diabetes.
In 2006, Weller didn’t know her grandmother also at 52 was diagnosed with colon cancer. Weller was a young child when her grandmother got sick and never heard the exact diagnosis.
In the United States, colorectal cancer is the second most common cause of cancer deaths among men and women combined, the American Cancer Society says.
“The new guidelines for getting a colonoscopy at age 45 might have prevented my diagnosis of Stage 3 colorectal cancer,” Weller said. In spring 2007, her tumor was removed.
She had gone through months of tough news and medical interventions, between December 2006 and early 2009, leading up to the permanent colostomy.
Eventually, she sought support and encouragement from others in the Spokane Ostomy Support Group. “I plugged into them after the permanent colostomy because, to tell you the truth, I was really struggling with grief,” she said. “When it was temporary, I was in a more power mode of let’s get through all this.”
A Liberty Lake resident, she has a master’s in pastoral ministry and worked for 24 years at Community Colleges of Spokane until she retired in 2013. She and her husband, Mark Weller, a retired nurse, moved here around 1989.
Today at age 67, Weller said she’s thankful for the option of having the colostomy. She wrote a booklet, “From Grieving to Resiliency: 10 Tools for Living Well With an Ostomy,” available on her website susieweller.com for spiritual coaching. She also presented the booklet at the National Ostomy Conference in California in 2017.
In hearing early stories of ostomy group members, Weller said she realized how many people retain active lives, from water-skiing in their 80s to traveling to far-flung locations.
Weller took that to heart and has herself traveled to 21 countries. “I’ve enjoyed walking the Camino in Spain, kayaking in Dubrovnik, riding a camel in Morocco and snorkeling in the Great Barrier Reef in Australia,” she said.
Ostomy members taught her tips to make life easier on the go, such as how to fashion a temporary waste container for trips. It’s an empty container for potato chips that is lined with a disposal bag. She’s also learned about other to-go supplies and resources for her regular hiking.
Weller now serves as the Spokane ostomy group’s coordinator, and she recently promoted Oct. 2 as World Ostomy Awareness Day. The ostomy group meets via Zoom to offer support for living with an ostomy, along with how to stay active. Another information source is ostomy.org.
For her health, Weller follows another mantra – regular screenings. Since 2006, she’s had a colonoscopy once every three years.
After the most recent one Sept. 8, she learned at least two polyps were removed. The note said, “These polyps if left in your colon can increase the risk of developing colon cancer. To be clear, you don’t have colon cancer, and they’re considered to be benign. However, they were removed, and you should repeat in three years.”
Weller also urges people to ask about family medical history. She’ll ensure that her relatives stay on track.
“When our two children turn 40, their birthday gift will include me paying their copay to get their first colonoscopy.”