My Endometrial Cancer Hid in Menopause

as told to Erica Rimlinger

As far as I knew, I wasn’t going through menopause. I was going through “the change.” Like many women of my generation, I grew up in a home, community, and society that talked vaguely about “change” and the “problems” that arose when you reached a “certain age.” I learned from previous generations of women in my family and community that we did not use clear words in polite conversations. I didn’t know what normal menopause looked like or felt like—I just knew that we were supposed to whisper when it came to menopause, bleeding, and uterine health, if we even touched on those topics. As a result, I knew “nothing,” or rather, nothing about the normal and abnormal symptoms of menopause, and when to discuss these symptoms with my doctor.

Still, I thought I knew a lot, or at least enough, about women’s health. I have always been health conscious, and in my work as a group fitness instructor, I take pride in helping my clients prioritize their health. I always kept all of my annual OB/GYN appointments and scheduled all of my routine mammograms. I lived a healthy lifestyle and modeled it for my students.

But I didn’t recognize an important symptom of endometrial or uterine cancer because I thought occasional and infrequent bleeding It was a normal part of the menopause process. Well, that’s mostly what I thought. In fact, it hadn’t even occurred to me to count the months since my last period. I wasn’t keeping track.

After a few years of these symptoms, I inadvertently mentioned to my doctor that I was still spotting and bleeding, and that it was getting more severe. He stopped what he was doing, looked up and said, “You should be done with that by now.” She ordered an ultrasound.

I had the ultrasound, but I moved to a new city and soon after switched to a new doctor with a new insurance plan. Health care in the United States (or, more specifically, health insurance) does not follow us seamlessly through life. The radiologist noticed in my test results that the lining of my uterus was a little thick. But my doctor never contacted me to talk about the ultrasound, so I didn’t think anything was wrong.

My next visit to the OB-GYN, nine months later, was a nightmare. My new doctor was concerned about my symptoms and insisted on having me tested. biopsy. He said it would be a little uncomfortable but not bad, so he did it without anesthesia right there in the office. I had never felt so much pain in my life when he cut a piece of my uterus right on the table. I’m not one to complain about pain (I’ve had two vaginal births with nothing more than a mild dose of relaxing medication during one of them), but this was a bloodbath. The doctor gave me antibiotics, ordered a new ultrasound and referred me to a oncologist. She told me to bring someone with me to that appointment and keep her informed.

Having never had a serious illness or surgery, broken a bone, or been hospitalized, I was unfamiliar with most medical terms and didn’t know what an oncologist was. When I returned home, my daughter informed me that a referral from an oncologist only meant one thing: I had cancer. They took me by surprise.

When the time came, I took a friend to the surgical oncologist’s appointment. The doctor spoke quickly and used unfamiliar medical terms. My friend, who was not shy, asked the doctor again and again to slow down and explain what he was talking about. My friend was polite but assertive and became even more assertive as the doctor went over the plan, without stopping or explaining a word he said. The entire appointment, from start to finish, lasted 15 minutes. I left stunned and more confused than when I entered.

Overwhelmed, I agreed to have the surgery within two weeks of the appointment. It was supposed to take two hours but it took four.

In my post-surgical check-up, I learned that I had Endometrial cancer grade 3 1B and my lymph nodes He had tested negative for cancer. Even the name of the cancer was another unclear medical term: endometrial cancer. Unfortunately, I had already learned then that it is uterine cancer.

My surgeon told me I would need six to eight rounds of chemotherapy and five to six weeks of pelvic radiation. Again I felt that the doctor was speaking for me, not with me, and I sought another opinion. The second doctor recommended four or five rounds of chemotherapy plus five weeks of pelvic radiation. Each doctor had a different plan and no one seemed to listen to my concerns or fully answer my questions in a way that made sense to me. Until then, I had attended my appointments in a kind of daze of surprise. But now I recovered and realized: I needed more from the medical team in charge of saving my life. I deserved to participate in my own team. I decided to get a third opinion.

That’s when I met Dr. Kemi Doll. She was different. When he spoke to me, he looked me in the eyes. He took the time to listen to my questions, explained the treatment options in plain English, and then made sure I understood. She asked me, “What did you hear me say? What did it mean to you?

She recommended that I consider brachytherapy radiation, a type of radiation that is taken internally and is less harmful to nearby organs. However, it is still invasive and not just because it involves inserting a tube into the vagina. There always seemed to be too many medical staff looking inside my vagina at these appointments. Throughout my treatment, Dr. Doll encouraged me to believe in my healing and told me I was going to be okay.

Dr. Doll was researching answers to a broad but simple question about endometrial cancer: Why are black women twice as likely to die from endometrial cancer when diagnosed at rates similar to white women? I wanted to build a community and support group for Black women to connect and learn about uterine health. He wanted to study how education and outreach could improve survival rates. She asked me to join her to create ECANAthe African American Endometrial Cancer Action Network.

“Do you want to be my patient partner?” he asked, after my last chemotherapy appointment. I said yes, not fully understanding what that would mean. But it meant everything. Today, ECANA works to fight disparities in outcomes and build community among Black women fighting endometrial cancer. We have movement classes, support groups, educational sessions and more.

Throughout my journey and my work with ECANA, I realized how little women really talk about uterine health, even in our own families. Through my sister, I discovered that my mother had a hysterectomy She was in her early thirties and suffered from fibroids like me. We never mentioned it to each other, even though many uterine health problems are genetic.

Today I am in remission. I have four granddaughters and you better believe we talk openly about uterine health at Grandma’s house. I want my daughters to understand how a healthy uterus works and where to go if they have questions about their health.

I wish previous generations of women, like my mother and I, hadn’t grown up in a culture that made uterine health a taboo topic. I always encourage women to talk about their endometrial health. Encourage your daughters to keep journals. Talk about bleeding. If you are tempted to ignore a so-called “embarrassing” problem or hide behind shame, confusion, or misinformation, talk anyway and keep talking until you know and understand all of your options. There is too much at stake to remain silent.

This educational resource was created with the support of Merck.

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