Cracking the Wall of Silence

I am an endometrial cancer survivor and marathon runner.

Diagnosed with an unusually aggressive, high-risk form of the disease, I was given just a 20 percent chance of surviving five years. By the grace of God — and after logging many miles on my running shoes — I am now six years cancer-free.

I began running in 2013 at age 58, a year after cancer surgery and treatments. I’d had more than my fair share of sick days during the previous year, but by the morning of my first 5K, I felt healthy as a horse. I made myself two promises that day: I was not going to make it easy for my cancer to return, so I would keep my body healthy — running was one way to do that. And I would find a way to use my running shoes to help others with high-risk endometrial cancer.

The latter was important because even though endometrial cancer is the fourth most common cancer for American women, almost nobody speaks about it in public. The mainstream media seldom mention it.

If you have never heard of endometrial cancer, you’re in good company. I had never heard of it, either, until my doctor told me I had it. There is a wall of silence that surrounds this type of cancer.

It has a reputation as a “good cancer.” For women who find their cancer early, it can be. Most are cured by surgery alone. But for many, it’s anything but good. More than 61,000 women will receive an endometrial cancer diagnosis this year, according to the American Cancer Society (ACS). About 10 to 20 percent of those cases will be high risk. Those women will face a tougher fight because of the silence.

Let me explain. Imagine sitting in your oncologist’s exam room facing a huge, inviting poster that reads “Ask your doctor if a clinical trial is right for you.” Now imagine you have searched every clinical trial data­base you could find. Not one listed a clinical trial open to you. And your doctor can’t find one, either.

I don’t have to imagine it. I lived it. Given a dismal prognosis, I wanted to be included in a clinical trial. There were plenty of trials for other women’s cancers — breast, ovarian, cervical — but there were almost none for women with high-risk endometrial cancer. It seemed nobody was looking for a cure for my cancer.

I wanted to be included in a clinical trial. No trial wanted me.

Research for all gynecologic cancers is underfunded. That’s a situation that needs to change. But as difficult as it is for women with ovarian and cervical cancer to find a clinical trial, it is almost impossible for women with high-risk, recurring or metastatic endometrial cancer to find a study that will include them.

Why are there so few clinical trials for the most common gynecologic cancer? Don’t women with endometrial cancer deserve a chance to live, too?

In 2013, the ACS estimated that 8,190 women would die from endometrial cancer. Six years later, that number has risen to more than 12,000. The women dying are our mothers, grandmothers, daughters, sisters, coworkers and friends.

It’s easy to overlook cancers invisible to the public eye when it’s time to fund research. But research saves lives, and we need more of it to cut the number of women dying from endometrial cancer.

But how will we get it? I am only a single person. I have no money, no influential friends and no political influence. What I do have are my running shoes, my special race shirt honoring those lost to endometrial cancer and a willingness to run the extra mile for them.

So, for the fourth straight year, I will run/ walk a 100-mile ultramarathon this Labor Day weekend — the start of Gynecologic Cancer Awareness Month.

I don’t have the power to reduce the number of women who receive diagnoses or die, but maybe running 100 miles for endometrial cancer awareness will help chisel a crack into that wall of silence.

Colleen Johnson PH.D., is a retired statistics professor and chicken farmer who helped beat endometrial cancer by losing 100 pounds and transforming herself — at age 58 — from a self-described couch potato to an ultramarathon runner. She is a peer navigator with the Friend for Life Cancer Support Network in Louisville, Kentucky, and advocated to get uterine cancer included in the National Comprehensive Cancer Network Guidelines for Patients, now available at nccn.org/patients.