I was diagnosed with Stage IV colorectal cancer in June 2011, four months after the unexpected death of my husband. For at least six months I had been experiencing pain while sitting and rectal pain, and was being treated for hemorrhoids. After finally receiving a colonoscopy, I was diagnosed with rectal cancer with a BRAF (V600E) mutation.
My treatment lasted for one year and included weeks of radiation with Xeloda chemotherapy, followed by oxaliplatin with Xeloda, followed by a phase 1 trial using drugs that were successful with BRAF melanoma patients.
After about 3 months, my tumors grew larger and I was taken off of the meds and put back on oxaliplatin and Xeloda for a few treatments, and then maintained on Xeloda alone for about six months. During that time I also received SBRT (stereotactic body radiation therapy) to the tumor on my right adrenal gland.
More than a year after diagnosis I had major surgery. Three organs were removed completely – my rectum, right adrenal gland, appendix – and approximately 10% of my liver was removed. My GI tract was “modified” and I was given a temporary ileostomy that was reversed 10 weeks later. I did not have any treatment after surgery. I have been NED (no evidence of disease) for 7+ years.
I advocate for screenings, treatments, and especially research to improve care for patients in the hope that my children, my grandchildren, and friends will not have to go through what I went through.
Connecting with Fight CRC’s RATS Program
I worked with the Colorado Colorectal Cancer Task Force to raise awareness of colorectal cancer (CRC), and in particular celebrating the month of March. I connected with Andi Dwyer, Fight CRC’s Director of Health Promotion while planning an event for CRC survivors and caregivers. When Fight CRC planned the first RATS training in 2015, she invited me to be part of that first class.
Andi told me about the RATS program and it sounded very exciting. I wanted to join because I love science and I believed this was a way I could be more involved with CRC research. Being involved as a RATS member is important to me because I believe this is a way that I can support patients by giving the patient point-of-view to those involved in research, and by learning about cutting-edge research to help educate patients with CRC.
As a RAT, I am involved in two initiatives that are particularly important to me. The first is my involvement in activities of the Colorado Colorectal Cancer Task Force. There are many things we do in this committee, including celebrating Colorectal Cancer Awareness Month each March. We work on raising awareness of CRC with emphasis on prevention. However, this year we have a new initiative we hope to have passed in the state of Colorado. We would like to have the age for cancer screening decreased from 50 to 45 in accordance with American Cancer Society guidelines.
Making the Patient Voice Heard
The second program I’m part of that is very impactful for me is evaluating CRC research applications for the Department of Defense (DOD). In my group, we discuss the merits of each research application and give our opinions as research advocates – and they listen to us! It is very affirming to be asked our opinions, and it is very uplifting to listen to discussions of these extremely intelligent people. It is great to have the give and take in a discussion between researchers and research advocates. It is quite a bit of work, but well worth the effort. My hope it to continue to represent the views of the patient in evaluating research.
I believe that including research advocates in cancer research is important as it gives the patient perspective and reminds researchers that it is not just filling a gap in knowledge or treatment when cancer research is being done. It is learning more about colorectal cancer and its treatment in order to improve patients’ care and raise their quality of life toward finally curing this cancer.
Fight CRC is funding groundbreaking research programs to end colorectal cancer, like the Research Advocacy Training Program. When you support Fight CRC, you directly support colorectal cancer survivors like Karen. Donate today!