‘How I knew I had endometrial cancer’: Survivors share their stories

Maria Lozano was already well into menopause when she started experiencing the most common symptom of endometrial cancer (also known as uterine cancer): abnormal vaginal bleeding. 

“After 10 years of not having my period, suddenly I was bleeding again,” says Maria, who was 59 at the time of her stage 3 endometrial cancer diagnosis. “My sister told me I needed to see a doctor.” 

Kirsten Arendes had a similar experience, though she was less than a year into menopause.  

“I hadn’t had a period for about 10 months,” recalls Kirsten, who was diagnosed with stage 1 endometrial cancer at age 51. “Then I had one super, super heavy period. I assumed it was normal for things to kind of come and go toward the end, though, so I didn’t think anything of it. Then the same thing happened the following month. And the next one.” 

Abnormal bleeding serves as the body’s early warning system 

Maria and Kirsten’s experiences are not unusual.  

“Post-menopausal bleeding can be a signal the body gives us that something is not right,” explains gynecologic oncologist Larissa Meyer, M.D.  “While not all postmenopausal bleeding is due to cancer, 90% of women with postmenopausal endometrial cancer report experiencing abnormal vaginal bleeding. So, it certainly warrants an endometrial biopsy, which can usually be performed as a simple, in-office procedure.”

“Unlike ovarian cancer, which is often diagnosed in the later stages due to an absence of clear symptoms, vaginal bleeding after menopause is a classic sign of endometrial cancer that drives many people to see the doctor,” she adds. “Often, it allows us to diagnose endometrial cancer in its earlier stages when the disease is easier to treat.” 

 Abnormal vaginal bleeding is sometimes hard to notice 

 Abnormal vaginal bleeding is such a common symptom of endometrial cancer that it occurs in much younger women, too. 

 “It’s trickier to diagnose in the premenopausal population, though,” notes Meyer. “That's because a lot of women have never really menstruated normally, so changes associated with the development of cancer may not be as noticeable.” 

 Some women experience only sporadic bleeding, for example, or have menstrual periods that don’t follow a typical monthly cycle.  

 “If that’s your normal,” Meyer notes, “and nobody ever told you to expect otherwise, you might not even recognize that the bleeding is from cancer — or have been told about ways to determine if it is, such as an endometrial biopsy.” 

That was the case for Aimee Williams, who was 43 when she was diagnosed with stage 3 endometrial cancer. “My periods were always unpredictable,” she recalls. “They could be anywhere between 12 and 40 days apart, so I never really knew when they were coming. I thought that’s just how my body was, so I dealt with it for 30 years.”

Marivic So, an ambassador with Patient Relations at UT MD Anderson, had a similar experience.

“One month, I would have heavy bleeding and then the next month, nothing,” says Marivic, who was 32 when she was diagnosed with both ovarian and endometrial cancers at the same time. “So, I never really thought about it. A couple of years before my cancer diagnosis, I was bleeding so much that I had to go to the emergency room and receive a transfusion." 

 The connection between infertility and endometrial cancer 

 Endometriosis, PCOS and several other conditions can cause irregular ovulation, making the conventional method of conception a challenge. That’s why many younger women only discover they have endometrial cancer when they seek help for infertility.  

“My husband and I had been trying to get pregnant for years,” recalls Callie Glaves, who was 31 when she was diagnosed with stage 2 endometrial cancer. “My regular gynecologist had been on my case to see a specialist because I had a history of ovarian cysts. I finally said OK in 2016.” 

That’s when Callie found out she had cancer. 

 “Whether it’s not ovulating due to PCOS, obesity or some other cause, the same issues that can lead to infertility often predispose women to endometrial cancer,” Meyer explains.  

 Other common symptoms of endometrial cancer 

Not everyone with abnormal vaginal bleeding will be diagnosed with endometrial cancer. Other symptoms of this disease include: 

• pelvic pain 
• unexplained weight loss 
• abnormal vaginal discharge  

Moina Faruqui experienced the last symptom on that list for about three months before she was diagnosed with stage 4 endometrial cancer at age 65. 

“In the fall of 2009, I started feeling not just tired, but exhausted,” says Moina, now 78. “I also had an unpleasant vaginal discharge. It wasn’t bloody, but it was very foul-smelling.” 

When to see a doctor for endometrial cancer symptoms 

About 75% of patients diagnosed with endometrial cancer are already in menopause. But the disease is increasing in younger populations by about 1% to 2% per year, Meyer notes. 

 "If you have concerns about your cycle, or if you think you’re experiencing abnormal bleeding or any other symptom of endometrial cancer, talk to your gynecologist,” she says. “And, if you’re already in menopause and start bleeding again, get checked out. Because that’s not normal. Periods don’t just suddenly start up again years after they’ve stopped.” 

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