I was told I was too young to have endometrial cancer

As he said Shannon Shelton Miller

September is Awareness of Gynecological Cancer.

I was at work in February 2019, when Ob-Gyn called me and asked if I could get away for a moment.

“I would rather not do this over the phone, but it’s serious enough,” he said. “You have endometrial cancer. Stage 1, and I’ll refer you to an oncologist.”

I was shocked. I was just 24 years old and while I had experienced issues for most of my teenage and young adult years related to my reproductive cycle, I never imagined I would be diagnosed with cancer.

From high school, I always have irregular periods, sometimes lasting 10-12 days. In college, I began to experience excessive weight gain, acne and facial hair. After seeing a campus doctor and primary care doctor, I only received the usual tips to lose weight and change my diet. I tried to explain that my eating habits had not changed, but I was still gaining weight and I didn’t know what to do.

Eventually I saw a new Ob-Gyn near my home in Richmond, Virginia, which asked more questions about my symptoms. He told me that these were common signs of polycystic ovary syndrome or pcos. I was happy to have an answer, but I wondered why someone did not suggest that two to three years earlier.

I remember telling me that the PCOS could not be healed, so in my mind, there was no reason to do a lot of research on it. I guess I had to just manage it, but I was not given any action step for ways to lose weight or to deal with any symptoms other than examining birth control. I had control of births before and didn’t like how it made my body feel, so I decided against him.

A year later, my symptoms became more serious. I was inflated for months and the heavy bleeding started again. At the end of December 2018, I wanted to return to the provider who diagnosed me with PCOS, but was outside the holiday office. I saw another doctor, a white male, for about five minutes. I felt that he turned over everything I said and didn’t do the ultrasound or other tests I had requested.

“There is no way to have cancer,” he said. “Nothing happens.”

But I knew something wasn’t right. The bloating never left and I looked like I was pregnant. I called the office again in January and got an appointment with my Ob-GYN, which ordered ultrasound and other tests. When the pictures came back, he said he was worried about what he saw and ordered a D & c.

When he called me five days after this appointment, I was at work as a teacher before K to a primary school and went to the teachers’ lounge to talk. My doctor told me that I had endometrial cancer, a form of uterine cancer and wanted to see if I could see an oncologist that day. I told her I could and called my family. My mom, dad and my brother appeared to lead me to my appointment.

This is where my real frustration began to kick. Obviously, I was frustrated with all the experience, but when the oncologist asked if I had ever taken birth of births for my PCOS, he told me that he should because he could prevent cancer from developing. If I knew this, I would have taken this step and I would also like to know that I had PCOS earlier so I had more time to take action.

2025 (photo/Keith Nixon)

Instead, I was thrown into talks on the rate of survival for endometrial cancer, maintaining my fertility and preparing to be under medical surveillance for the rest of my life. It was difficult for me to suddenly think of having no kids or to hear that if I were a cure and the cancer returned, I would need a complete hysterectomy. My mom also had cancer at the same time, having been diagnosed six months earlier, so we all had very real conversations about mortality.

The oncologist said that I should not have undergone chemotherapy or radiation because I was so young and because my cancer was not at an advanced stage. We did hormonal treatment, which consists of two pills in the morning and two at night. It was very hard on my body – I won 25 pounds, and I ate all the time and still hungry. I felt uncomfortable on my skin.

After my treatment, I would see my oncologist every three months for surveillance to make sure the cancer had not returned. I had to visit often because I was so young with this particular type of cancer, which is usually diagnosed with menopausal women.

I was determined not to let cancer destroy all my dreams. The month after my diagnosis, I traveled to Cuba and later went to Joshua Tree National Park. My medical team has helped me develop a plan for my life after cancer, from monitoring to maintain fertility when I am ready to have children. In 2020, I froze my eggs in case I had to use them later. Being careful about how I wanted to move on gave me the peace of mind.

Last year I founded the Cooperative uterine careAn initiative to educate black women in uterine cancer, fibroids, endometriosis and PCOS. It is an online community hub where women can go to learn about these conditions, how to manage them and how to have conversations with women in your family about your family medical history. My hope is that collaborative uterine care will become a platform where women can learn and feel comfortable with these potential conversations.

As a public health communication, my messaging is that self -service is critical, especially for black women, because we are against a system that does not always listen to us, see or include us in research and clinical trials. It is important to tell women “hey if you are dealing with these symptoms, if you have this experience in the doctor’s office, you don’t have to accept it. If the answer is not well with you, get a second opinion.

I come from a background of faith and was always a very happy person. I do not have the luxury of spending the rest of my life worrying about whether my cancer will return or if I bleed again for eight months or whatever it may be. Last month, it was really exciting when my oncologist graduated from watching every three months in every six months, but I accept that I am only under control of what I can control.

I’m 31 now and I know my story is not over. After all, it’s all in the hands of God.

This educational resource was created with support from Merck.

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