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I first heard the words, "You have cancer," nearly thirty years ago, when I had just turned forty.
It was a shock, but not really a surprise. My grandmother, an uncle, an aunt, and two cousins - all had died young of colon cancer. My mother's first colon cancer appeared when I was a teenager.
Still, my stomach did a fast swoop to the basement and back when the doctor told me that the pain and diarrhea that I'd tried hard to ignore for weeks were due to a large tumor blocking my colon.
In those days, chemotherapy was limited and risky. Surgery was the common treatment for colon cancer, so I had a chunk of colon removed, got back on my feet, and went back to work trying not to think about what might happen next.
Nine years later the same symptoms reappeared - pain, cramps, diarrhea, weight loss. Doctors found another colon cancer, and I needed more surgery, and seven months of chemotherapy this time.
I had just begun chemo for the colon cancer, when I found a lump in my breast - another cancer, more surgery, and several weeks of daily radiation.
Eighteen months later, pain sent me back to the doctors and, after much scanning and poking and prodding, a mass on my ovary was diagnosed as ovarian cancer.
Meanwhile, my mother had another colon cancer, uterine cancer, and breast cancer. Something was clearly wrong in our family!
Finally, ten years ago, I bit the bullet, located a genetic counselor at a big cancer center, and was tested for Lynch syndrome, an inherited cancer that greatly increases risk for colorectal, uterine, ovarian, and several other cancers. I carry one of the Lynch syndrome genes, inherited from my mother.
Knowing the gene that was responsible for my own cancers made it possible for my sisters and my sons to be tested. While my sons were both free of the mutation, two sisters do carry it. They will have annual colonoscopies to catch polyps and early colorectal cancers and will be watched carefully for other Lynch-related cancers. With good surveillance, they won't die of cancer.
When the flurry of cancer treatment made an early retirement necessary for me in the mid-1990s, I turned my energies to learning more about cancer and advocating on behalf of people living with colorectal cancer. I became very active on an email list at ACOR.org, where patients and families discuss colon cancer. When the ACOR Colon List members discovered that there was no national organization devoted to colorectal cancer, we banded together to form the Colon Cancer Alliance in 1998, and I served on its first board of directors.
Since then, colorectal cancer advocacy has become my passion, particularly bringing the voice of the patient to cancer research. I am a patient advocate with two cancer cooperative groups, work with caBIG (Cancer Biomedical Informatics Grid), and write for the Colorectal Cancer Coalition.
My blog at fightcolorectalcancer.org/research_news tries to build a bridge between the scientific cancer research world and people living with colon and rectal cancer.
In the past year, I've begun working with the Department of Defense Peer Reviewed Cancer Research Program (PRCRP). Reviewing grant proposals along with a panel of scientific reviewers has taught me a great deal about colorectal cancer and colorectal cancer research. It has also given me a lot of hope for the future, as I am convinced that PRCRP research will make a difference in preventing and treating colorectal cancer.
Colorectal cancer can be beaten. It is preventable and, as I have discovered over quite a few years and quite a few encounters with the medical system, it can be treated successfully. Survivors can live long and meaningful lives.
As for me, I had my third and final colon cancer three years ago. Like many people with Lynch syndrome, I chose to have my entire colon and rectum removed at that time to prevent more colorectal cancer. I'm now an ostomate, but continue traveling several times a month to cancer meetings and conferences.
When I am home, I swim at the Y, walk with Ozzie, my rescued Bishon, write, and await the birth of my first granddaughter. A busy life - and a very good one.
Last updated Monday, January 3, 2022