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 in my generation, I was raised in a household, community and society that spoke vaguely about “the change” and the “problems” that crept up when you reached “a certain age.” I learned from previous generations of women in my family and community that we didn’t use clear words in polite conversation. I didn’t know what normal menopause looked or felt like: I only knew we were supposed to whisper when it came to menopause, bleeding and uterine health — if we brought those topics up at all. As a result, I knew “nothing,” or rather, nothing about normal and abnormal symptoms of menopause, and when to bring up these symptoms with my doctor.

Still, I thought I knew a lot — or at least enough — about women’s health. I’ve always been health conscious, and in my job as a group fitness instructor, I’m proud to help my clients prioritize their health. I’ve always gone to all my annual OB-GYN appointments and scheduled all my routine mammograms. I was living a lifestyle of health and modeling it for my students.

But I didn’t recognize an important symptom of endometrial, or uterine, cancer because I thought occasional, infrequent bleeding 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 months from my last period. I wasn’t keeping track.

After a few years of these symptoms, I happened to, offhandedly, mention to my doctor that I was still spotting and bleeding — and it was getting heavier. She stopped what she was doing, looked up and said, “You should be done with that by now.” She ordered an ultrasound.

I got the ultrasound but moved to a new city and changed to a new doctor with a new insurance plan soon after. Healthcare in America — or, more specifically, health insurance — doesn’t follow us seamlessly through life. The radiologist noted on my test results that the lining of my uterus was a little thick. But my doctor never followed up with me to discuss the ultrasound, so I didn’t think anything was wrong.

My next OB-GYN visit, nine months later, was a nightmare. My new doctor was concerned about my symptoms and insisted on doing a biopsy. She said it would be a little uncomfortable but not bad, so she did it without anesthesia right there in the office. I’ve never been in so much pain in my life as she cut out 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 relaxation medication during one of them — but this was a bloodbath. The doctor gave me antibiotics, an order for a new ultrasound and a referral to an oncologist. She told me to take someone with me to that appointment and keep her posted.

Since I’d never had a major illness or surgery, broken a bone or been hospitalized, I wasn’t familiar with most medical terms and didn’t know what an oncologist was! When I returned home, my daughter informed me that an oncologist referral meant one thing only: I had cancer. I was blindsided.

When it came time, I brought a friend to the surgical oncologist appointment. The doctor was speaking quickly and using unfamiliar medical terms. My friend, who was not shy, asked the doctor over and over again to slow down and explain what he was talking about. My friend was polite but assertive and grew even more assertive as the doctor ran through the plan, not slowing down or explaining a word he said. The entire appointment, start to finish, lasted 15 minutes. I left stunned — and more confused than when I had walked in.

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

At my post-surgical checkup, I learned I had 1B grade 3 endometrial cancer and my lymph nodes had tested negative for cancer. Even the name of the cancer was another unclear medical term: endometrial cancer. I’d unfortunately learned by then that it’s cancer of the uterus.

My surgeon told me I would need six to eight rounds of chemotherapy and five to six weeks of pelvic radiation. Again, I felt the doctor was talking over me, not to me, and I sought out another opinion. The second doctor recommended four or five rounds of chemo plus five weeks of pelvic radiation. Each doctor had a different plan, and neither seemed to hear my concerns or fully answer my questions in a way that made sense to me. Up until this point, I’d attended my appointments in a sort of shocked daze. But now I snapped out of it and realized: I needed more from the medical team charged with saving my life. I deserved to participate on my own team. I decided to go for a third opinion.

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

She recommended I consider brachytherapy radiation, a kind of radiation that is taken internally and is less damaging to nearby organs. It’s still invasive, though, and not just because it involves inserting a tube in the vagina. There always seemed to be far too many medical staff peering up into my vagina at these appointments. Throughout my treatment, Dr. Doll encouraged me to believe in my healing, telling me I was going to be fine.

Dr. Doll was researching answers to a large but simple question about endometrial cancer: Why are Black women twice as likely to die from endometrial cancer when they are diagnosed at similar rates as white women? She wanted to build a community and support group for Black women to connect and learn about uterine health. She wanted to study how education and outreach could improve survival rates. She asked me to join her in creating ECANA, the Endometrial Cancer Action Network for African-Americans.

“Want to be my patient partner?” she asked, after my last chemotherapy appointment. I said yes, not totally understanding what that would mean. But it’s meant everything. Today, ECANA works to fight outcome disparities and build community among Black women fighting endometrial cancer. We have movement classes, support groups, education sessions and more.

Through my journey and my work with ECANA, I realized how little women really talk about uterine health, even in our own families. From my sister, I found out my mom had a hysterectomy in her early thirties and suffered with fibroids like I had. We never brought it up to one another, even though so many uterine health issues are genetic.

Today, I’m in remission. I have four granddaughters, and you’d better believe we talk openly about uterine health at grandma’s house. I want my girls to understand how a healthy uterus functions and where to go if they have concerns 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 am always urging women to talk about their endometrial health. Encourage your daughters to keep journals. Talk about bleeding. If you’re tempted to ignore a so-called “embarrassing” problem or hide behind shame, confusion or misinformation, speak up anyway — and keep speaking up until you know and understand all your options. The stakes are too high to stay silent.

This educational resource was created with support from Merck.

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This article was originally published on healthywomen.org.