Article: Signs of endometrial cancer: Six survivor stories
Most relevant for: Women who want to learn more about the signs of or are at risk for endometrial cancer.. It may also be relevant for:
- people with endometrial cancer
- healthy people with average cancer risk
- people with a family history of cancer
- people with a genetic mutation linked to cancer risk
Quality of Writing: High
What is this article about?
Endometrial cancer, also called uterine cancer is a cancer that starts in the endometrium, the inner lining of the uterus. Endometrial cancers can spread beyond the endometrium, most commonly to the ovaries, , cervix and . Risk factors for endometrial cancer include an increased level of , age, obesity and certain gene mutations that increase the chance of developing this cancer.
The six women interviewed in this article differ in age and of their lives, but most described that they experienced something abnormal about their menstrual cycle that required further investigation. The article includes descriptions of the symptoms they experienced and how they were first diagnosed with endometrial cancer.
Unexplained bleeding is the most common symptom of endometrial cancer
One of the most frequent symptoms of endometrial cancer is abnormal uterine bleeding. Most commonly this is bleeding after menopause. For younger women this can be bleeding between menstrual cycles or heavy bleeding with menses. Maria had not had a period for 10 years, while Kirsten had not had a period in 10 months. Both then experienced bleeding, which led to diagnoses of endometrial cancer.
Larissa Meyer, M.D. mentions, “While not all postmenopausal bleeding is due to cancer, 90 percent of women with postmenopausal endometrial cancer experienced abnormal vaginal bleeding. So, it certainly warrants taking a sample of endometrial tissue, which often can be be performed as a simple, in-office procedure.”
Unexplained bleeding may be hard to recognize
While less common, some women may develop endometrial cancer before menopause. Becky was diagnosed at 39. She explained that she never had normal periods. Then they became even more irregular with bleeding between periods.
Tralisa had an experience similar to Becky's. She had irregular periods her whole life because of endometriosis and polycystic ovarian syndrome (PCOS). When the bleeding worsened, she thought it was because she was getting older. Like Becky, Tralisa was also diagnosed with endometrial cancer.
Infertility due to PCOS, endometriosis or other causes is also linked to increased risk of endometrial cancer. Callie, who had a family history of ovarian cysts, had been trying to get pregnant for years. Her gynecologist urged her to see a fertility specialist; she was later diagnosed with endometrial cancer.
Other signs of endometrial cancer
Not everyone with abnormal vaginal bleeding will be diagnosed with endometrial cancer. Other signs of endometrial cancer include:
- pelvic pain
- unexplained weight loss
- abnormal vaginal discharge
Moina experienced abnormal vaginal discharge for about three months before she was diagnosed with endometrial cancer at age 65. She said, “I had an unpleasant vaginal discharge. It wasn’t bloody, but it was very foul-smelling.”
Endometrial cancer risk
Anyone with a uterus is at risk for endometrial cancer.
The average woman’s lifetime risk for endometrial cancer is about three percent. That risk is increased for women with an in the following genes:
- (due to an in , , , or )
- possibly (for certain rare forms of lifetime endometrial cancer risk increases from 3 percent to 5 percent)
Endometrial cancer risks differ by gene. More information on genes linked to endometrial cancer risk can be found here.
What does this mean for me?
Media articles are often full of statistics and data, which is important but may be difficult to understand without a scientific or medical background. Storytelling has been shown to be a powerful tool for people who seek out information when faced with new or unfamiliar health concerns. The women’s stories in this article highlight the symptoms of endometrial cancer and how they can differ among women.
Knowing the symptoms of endometrial cancer can lead to an earlier, more treatable diagnosis. If you are experiencing signs or symptoms of endometrial cancer, talk with your doctor about checking you for endometrial cancer.
Risk management may include screening, medication or surgery. Different national expert guidelines for endometrial cancer risk management are based on your level of risk. If you are at high risk for endometrial cancer due to an , talk with your doctor about ways to manage your risk and which risk management plan and schedule is right for you.
Spot Her is a campaign from the pharmaceutical company Eisai, FORCE, Black Health Matters, Ecana, SHARE and the Gynecologic Cancer Foundation to raise awareness of endometrial cancer. Together, we are trying to help end the silence around endometrial cancer by empowering people across generations and cultures to recognize symptoms earlier, speak up and take appropriate action.
It took a lot of courage and vulnerability for these six women to share their personal stories to help others learn about the signs of endometrial cancer. You can find other personal stories about hereditary cancers, including hereditary endometrial cancer, on the FORCE blog here.
Reference (Original Article)
DeMarco, C. How I knew I had endometrial cancer: Six survivors share their stories. MD Anderson Cancer Center: Cancerwise. Published online September 21, 2023.
American Cancer Society. Key Statistics for Endometrial Cancer. Published online January 12, 2023.
Entwistle, V. A., France, E. F., Wyke, S., et al. 2011. How information about other people’s personal experiences can help with healthcare decision-making: a qualitative study. Patient Education and Counseling, 85(3), e291–e298.
Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
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- When should I be concerned about abnormal bleeding, bloating, pelvic pain or pressure?
- How can I tell if I am in menopause? Should I expect more bleeding?
- What is my risk for endometrial cancer?
- Should I be screened for endometrial cancer?
- I have a family history of endometrial cancer; should I consider genetic counseling and testing?
The National Comprehensive Cancer Network (NCCN) provides the following guidelines for the management of gynecologic cancer risk in people with inherited mutations that are linked to endometrial or ovarian cancer. We recommend that you speak with a genetics expert who can look at your personal and family history of cancer and help you to determine the best risk management plan.
, or mutation
- Recommend risk-reducing salpingo-oophorectomy between the ages of 45-50.
- Be aware of endometrial and ovarian cancer symptoms.
- Consider endometrial biopsy every 1-2 years beginning at ages 30-35.
- For postmenopausal women, consider transvaginal after discussion with your doctor.
- Consider risk-reducing hysterectomy; discuss risk-reducing removal of ovaries and with your doctor (, , and ).
- Discuss the benefits and risks of oral contraceptives.
- Be aware of endometrial cancer symptoms.
- Consider endometrial biopsy every 1-2 years beginning at age 35.
- For postmenopausal women, consider transvaginal after a discussion with your doctor.
- Consider risk-reducing hysterectomy.
The following organizations offer peer support services for people with or at high risk for endometrial cancer:
- FORCE peer support
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Private Facebook Group.
- Virtual and in-person support meetings.
- Join a Zoom community group meeting.
- SHARE is a nonprofit that provides support and information for women with breast, ovarian or endometrial cancer.
ECANA is an online resource for Black people with endometrial cancer.
The following resources can help you locate an expert near you.
Finding gynecologists with expertise in cancer risk and treatment
- The Foundation for Women's Cancer has a search tool to help you find a gynecologic oncologist.
Some symptoms and conditions related to female reproduction may be managed by other experts.
- The Oncofertility Consortium maintains a national database of healthcare providers with expertise in fertility preservation and treatment of people who are diagnosed with cancer or have a high risk for cancer due to an .
- Livestrong has a listing of 450 sites that offer fertility preservation options for people diagnosed with cancer.
Financial assistance may be available to make the cost of fertility preservation affordable for more patients. Patients are referred to those programs as needed.
- The North American Menopause Society has a tool to help you find a qualified menopause expert in your area.
Sexual health experts
- The Sexual Medicine Society of North America (SMSNA) has a search tool to find experts in your area who provide sexual health care services.
- The American Association of Sexuality Educators, Counselors and Therapists (AASECT) maintains a tool to help people find a sexual health expert near them.
Other ways to find experts
- The National Cancer Institute (NCI)-designated comprehensive cancer centers deliver cutting-edge cancer care to patients in communities across the United States. Most centers have specialized screening and prevention centers for high-risk people. Find a center near you and learn about its specific research capabilities, programs, and initiatives.
- Register for the FORCE Message Boards to get referrals from other members. Once you register, you can post on the Find a Specialist board to connect with other people who share your situation.