This evening the #gyncsm community gathered to chat about Endometrial Cancer - Risk, Symptoms, Treatments. We also discussed endometrial cancer care among women of color and the current disparities. We were pleased to have Adrienne Moore, @AdrienneEcana, survivor and patient advocate, share her experience with us. We had 27 participants for this informative chat. You may find our transcript here and analytics here.
Some sample responses to our topic questions appear below. Resources shared during the chat may be found within the sample responses and at the end of this post.
T1: What increases a woman's risk of developing #endometrialcancer? Age/Genetics/Other Factors? How common is endometrial cancer and how aware are women about it?
- Endometrial Cancer is diagnosed 60,000 X per year in the US. Cure rate 85%. Risks: Obesity, late menopause, infertility, fam history of Lynch Syndrome. Treatment surgery+\-radiation and chemo. Genomic testing recommended.
- Obesity and older age are the typical risk factors for endometrial cancer. A small number of women have a genetic risk. At a population level declining rates of hysterectomy for benign gynecologic disease has also led to increasing endometrial cancer diagnoses.
- An estimated ~3% of endometrial cancer is hereditary -- primarily due to increased risks associated with #LynchSyndrome. There are several LS genes, each with different levels of risk to develop endometrial cancer
- Lynch syndrome can also increase someone's lifetime risk for other cancers, like ovarian and colorectal cancer. If you have a family history of these cancers, talk to your health care team + a genetic counselor to better understand your risk+ prevention options
T2: How are cancers of the uterus diagnosed? What symptoms are women experiencing that lead to diagnosis?
- Symptoms are most commonly irregular vaginal bleeding.Diagnosis is through endometrial biopsy either in the office or the operating room.
- T2/A2 I experienced heavy bleeding for 3 weeks before a doctor would see me.
- Recognizing the symptoms of endometrial cancer https://www.youtube.com/watch?v=MalYxhuIH5c&feature=youtu.be via @YouTube #WomensHealth #gyncsm
- My main symptom was abnormal menstrual cycles. I went to several gynecologist because of it and sadly not one ever brought up endometrial cancer.
- @GYNCancer - Symptoms ” warning sign for uterine cancer, including endometrial cancer, is abnormal vaginal bleeding.” In older women, any bleeding, spotting, or brownish discharge after menopause may symptom #gyncsm
- @frandrescher experienced a Delay in diagnosis of endometrial cancer due to her young age and sense from the medical establishment that she was unlikely to have a cancer. Biopsy should be done on any women over 35 with irregular bleeding. #gyncsm
- T2: Women also run into weight bias at the
doctor's office when reporting symptoms. The age thing, as mentioned,
can be a diagnosis barrier for most of the gyn cancers or any cancer.
Not just older women get cancer.
T3: What are the different types of #EndometrialCancer? Are they treated differently?
- There are multiple different types of endometrial cancer, most commonly endometrioid, also carcinosarcoma and papillary serous + clear cell subtypes as well as adenosarcoma. All are treated differently due to different genetic fingerprints and susceptibility to treatment.
- T3: Terms and types and subtypes within cancer make my brain hurt. There are 2 main types of uterine cancer - endometrial (90% of uterine cancers) and sarcoma. Then for endometrial there are varieties. Most treated with surgery/radiation/chemo.
- within endometrial cancers often divided by low risk (type1) and high risk cell types (type2). High risk types like serous, clear cell, carcinosarcoma are often treated more aggressively due to presentation at higher stages or due to higher recurrence risks.
- Subtyping of endometrial cancer is so behind other disease sites! We having even reached the ER/PR/HER2 categorizations that define breast cancers. Research is needed on the molecular categories - POLE, MMR, and p53
- Yes both everolimus and temsirolimus have activity in endometrial cancer. We might have been stuck in applying these drugs indiscriminately instead of to patients more likely (by molecular subtype) to respond.
T4: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity?
- Generally, barriers to diagnosis and treatment which allow for advanced stage at diagnosis.
- There are disparities particular to WOC. Doctors are less likely to believe our symptom & often misdiagnose #gyncsm
- WOC are more likely not to be believed when reporting symptoms. Racism, African American Women, and Their Sexual and Reproductive Health: A Review of Historical and Contemporary Evidence and Implications for Health Equity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6167003/
- Assessment of Prediagnostic Experiences of Black Women With Endometrial Cancer in the United States https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2766042
- In 2019 @ECANAwomen convened survivors and researchers to come together and talk about policies to address the issues of bias in research
- @KemiDoll @ECANAwomen and others are doing great research and advocacy in this area. https://newsroom.uw.edu/postscript/spotlighting-common-female-cancer-and-health-disparity
- We need to make endometrial cancer information easily accessible to our young ladies as well as all ladies especially in the gynecologist office. I would have handled my abnormal bleeding differently if I had known it was a symptom of the disease
- from ASCO20 Uterine cancer histology and stage at presentation in black & white women: A cohort study of 488,000 Compared to white women black women are more likely to be dx with serous, clear cell,carcinosarcoma, leiomyosarcomas at adv stages
- T4: Black women more often develop high grade/aggressive types of endometrial cancer. Could be genetic, environmental factors? Also advanced stage at presentation plays a role. Need to educate about sxs, address insurance, systemic racism. Devoting my career to this!
- T4: public health researchers study system-level factors causing differences in health outcomes sometimes called "social determinants of health": includes factors that create barriers to accessing healthcare/health insurance, systematic racism in healthcare, etc
T5: What are the side effects of #endometrialcancer and its treatments that may impact a woman’s quality of life? What can be done to improve the lives of women diagnosed with endometrial cancer?
- We all experience the similar physical side effects but what about the emotional and psychological?
- link to a great video we made years back with @SGO_org via @ACS_Illinois grant on hearing pt voices and experiences about risk factors and healthy lifestyle change after endometrial cancer. https://www.youtube.com/watch?v=Qm-eUROxE58&feature=youtu.be
- T5/A5 we should implement #Cancer Rehab as part of treatment plan that includes post psychological therapies.
- Help with managing side effects are listed on this @CancerSupportHQ https://www.cancersupportcommunity.org/article/side-effects-management-endometrial-cancer #gyncsm
- Long term neuropathy and forced menopause are damaging to how you view yourself.
- T5: I think, unfortunately, that surgical menopause is still down-played and women are not really prepared well for it.
Please join us our next #gyncsm chat on Wednesday, September 9th at 9pmET as we discuss Rare Gyn Cancers during Gynecologic Cancer Awareness Month.
Stay well and safe.
Dee
#gyncsm co-moderator
OTHER RESOURCES SHARED:
Assessing endometrial cancer risk among US women: long-term trends using hysterectomy-adjusted analysis https://www.ajog.org/article/S0002-9378(19)30682-9/abstract
Losing Weight Linked to Lower Risk of Uterine Cancer https://www.cancer.net/blog/2017-02/losing-weight-linked-lower-risk-uterine-cancer
Managing the Side Effects of Endometrial Cancer https://www.cancersupportcommunity.org/article/side-effects-management-endometrial-cancer
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