A Tribute to Sarah DeBord, by Stacy Hurt
This is the first colorectal cancer awareness month I’m observing as a five year NED (no evidence of disease) stage IV survivor. Upon diagnosis in 2014, I had just an 8% of living five years, so to not only achieve that but now to hit this additional milestone is surreal. It’s also my first colorectal cancer awareness month without a dear friend and fellow advocate, Sarah DeBord. Sarah passed away last July after facing this disease for seven years.
I met Sarah at “Colon Camp” as she was there representing Colon Cancer Coalition. We instantly bonded, and I knew I had to find a way to be her partner in crime in the fight against colorectal cancer. Sarah was instrumental in creating a position for me at the Coalition, and though my time there was cut short due to caregiving duties for my intellectually and developmentally disabled son, Sarah left a lasting impression on me that inspires my advocacy efforts daily.
One thing that Sarah and I did really well together (other than have a poopload of fun), was take large amounts of complex information and boil it down to the “need to knows” for survivors and caregivers.
In that spirit, here are five things newly diagnosed patients need to know:
- “Colon cancer” and “colorectal cancer” can be used interchangeably. Colorectal cancer is the inclusive, scientific term but colon cancer is more widely understood by the general public for goals of raising awareness.
- Seek to have your case evaluated at an NCI-Designated Cancer Center. These hospitals have access to the latest and greatest medications, clinical trials, research, and technology.
- Regardless of stage, request that your tumor is biopsied for DNA sequencing. This will yield information on your tumor’s biomarkers that could prove relevant in treatment options such as immunotherapy or certain classes of targeted chemotherapy drugs.
- When presented with treatment options, choose the most aggressive option from the beginning to give yourself the best chance to get “ahead of the spread” for a good outcome.
- Ask for a consultation with a dietician at your treatment center for nutritional advice that will sustain you through side effects of treatment. For some tips to get started, go to American Institute For Cancer Research.
Stacy Hurt, MHA, MBA, is a stage IV colorectal cancer survivor, caregiver to her intellectually and developmentally disabled son, and patient consultant in the pharma/biotech and digital health sectors for companies focused on improving patient centricity and value driven care. She lives in Pittsburgh, PA with her husband and two sons. Connect with her on LinkedIn, Twitter, or her website.
Join the discussion 2 Comments
Thank you for these helpful guidelines. I am happy that I am being treated at an NCI hospital: UC Health in Denver. While I understand your first statement, I am now making a point of telling people I have rectal cancer; not colorectal and not colon. I think this is an important distinction to make as the surgeries and potential negative side effects are very different from colon cancer.
A very good distinction! Kathleen thank you for educating people about rectal cancer!! You are an awesome advocate for true education!!