The first weekend of April there was a sea of blue t-shirts in Nashville. No, it wasn’t University of Kentucky Wildcat basketball fans or any of the sport fans. The blue t-shirts were for colorectal cancer (CRC) awareness and all the people were headed to One Million Strong 2016, an event sponsored by Fight Colorectal Cancer. The weekend included a nighttime luminary event, a benefit at the Country Music Hall of Fame and a patient workshop called “Coffee with the Experts.”
At the coffee, healthcare experts (myself included) gathered to lead breakout sessions on a variety of topics to answer questions and to build a network of support for colorectal cancer survivors and their caregivers. I teamed up with nurse Tara Harb from St. Thomas Mid-Town Hospital in Nashville. We led a breakout session titled “Nutrition and Ostomy Care as a Colorectal Cancer Survivor.” The other breakout sessions included “Digesting Screening the 50 and Under,” “Caregivers and Cancer Co-Survivor Support,” and “Survivorship General Discussion.”
The event was a perfect opportunity for everyone to learn from other medical experts and especially from the survivors and caregivers themselves. Here are a few of my few insights from the “Coffee with the Experts”:
CRC survivors are resilient. Many of the survivors I met were stage III or IV when diagnosed. Several had cancer recurrences. But, that didn’t hold them back from tackling the treatments and surgeries they faced.
Cancer care varies. CRC cancer is affecting more young people under age 50, and many surviors I spoke with Saturday were under age 30! As young adults, these cancer survivors are mobile, not staying in the same place for too long. Some moved for their careers or quality of life. Others moved to seek treatment at a specific cancer center. During one of the general discussion sessions, several of the younger survivors shared how their care varied among cancer centers (even with national comprehensive cancer care standards). These smart survivors know the right questions to ask and topics to discuss with their healthcare team, including new therapies and multidisciplinary services such as ostomy care, nutrition therapy, genetic counseling, and survivorship planning.
Survivors and Co-Survivors are pro-active. Knowing geneticist Heather Herman and other doctors would be at the event, many brought their family medical history or cancer family tree written on paper to discuss with the experts. They want to know how their family members can reduce their risk of CRC. In the area of ostomy care, many survivors reported that if one type of ostomy did not fit well or was uncomfortable they would research alternative manufactures. When one nutrition strategy was not beneficial, a young survivor struggled and experimented until she discovered a successful food pattern post treatment.
CRC need more access to nutrition experts. It was shocking that many CRC survivors felt they did not have access to a registered dietitian nutritionist after their hospital discharge or after they were discharged from follow-up care by their surgeon. Since cancer surgery and treatments have cumulative effects, especially on digestion and nutrition status, there is a real need to have routine access to a nutrition expert who works in oncology.
Over all, colorectal cancer survivors are very similar to other cancer survivors and they may share similar experiences. My take home messages: Know your own strength! Be Strong and get the care you need, when you need it. Reach out to cancer centers and organizations that have cutting edge information based in research.
To learn more about colorectal cancer, visit My PearlPoint.