Carol Koch

Carol's story

In 1978, I was admitted to the hospital with nausea, weight loss, pain, and change in bowel habits. After two to three days, a surgeon was brought in to see me. He decided to do an exploratory surgery.

I woke up with a resection of a fist size tumor and a colostomy. I didn’t get a stage number back then, just a promise the colostomy would be reversed in six weeks and advised that I would need frequent testing.

My doctor came, almost running and smiling, into the hospital room to tell me the tumor had not spread outside of my colon. I’m sure he understood what that meant more than I did at the time.

Two years later, a small, malignant growth was removed during a colonoscopy. My surgeon then recommended a sub-total colectomy.

It’s amazing to think back now that, as a general surgeon, he had never done the surgery, but he studied up on it and removed all but 30cm of my colon. I continued to see him for annual flex-sigmoidoscopies, performed in his office, for the next 20 years or so.

He retired, and I started having my annual colonoscopies at a NCI endoscopy center and still do today. During the sub-total colectomy, I also had a full hysterectomy. There wasn’t much known about Lynch syndrome at the time, but my father had had colon cancer and it was deemed a possible familial disease.

I was advised there was also a risk of gynecological cancer; hence, the full hysterectomy. I was 30 years old at the time of that surgery, and I’m now 72.

In 2015, I had ureter cancer that spread to my retroperitoneal lymph nodes. I had surgery and chemo for it in 2015, '16, and '17 and am currently NED.

I found out in about 1995 that I have Lynch syndrome-MSH2. It can be overwhelming to stay on top of the surveillance and treatments, but with knowing my genetic biomarkers and the amazing physicians, nurses, patient advocates, genetic counselors, family, friends, and especially my husband, I am continuing to keep up with screening and living a full and rewarding life.

Signs and symptoms

Signs and symptoms included ongoing change in bowel habits, unexplained sudden weight loss, and fatigue.

Side effects

Side effects included fatigue, bowel irregularities, secondary cancer(s), and distress or mental health issues/illness.

Clinical trial participation

I participated in the early blood test trial at MD Anderson that identified the Lynch syndrome genes. I also participated in a study of the effects of Lynch syndrome on mental health.

Carol's advice

Get screened! I’ve had more than 40 colonoscopies, and it’s just part of what me and my family have to do to catch any early occurrences of colon cancer. Make the time for it and save yourself the pain and heartache of a serious colon cancer diagnosis.

Don’t be shy or embarrassed to talk about colon and rectal cancer. It’s something everyone needs to be aware of and tested for. Early detection can save your life!