August 12, 2020 Endometrial Cancer Chat

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:

Recognizing the symptoms of endometrial cancer https://www.youtube.com/watch?v=MalYxhuIH5c&feature=youtu.be

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

Endometrial Cancer #gyncsm Chat August 12, 2020

 

Join the #gyncsm community on Wednesday, August 12th at 9pmET / 8pmCT as we discuss Endometrial Cancer - Risk, Symptoms, Treatments along with special guest Adrienne Moore @AdrienneEcana who is a survivor and patient advocate.

Topic Questions for Wednesday's chat:

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? #gyncsm

T2: How are cancers of the uterus diagnosed? What symptoms are women experiencing that lead to diagnosis? #gyncsm

T3: What are the different types of #EndometrialCancer? Are they treated differently? #gyncsm  

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? #gyncsm

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? #gyncsm

Here are some Endometrial Cancer resources and we hope to see you at the chat.

Uterine/Endometrial Cancer:

• NCCN Guidelines for Patients - Uterine 
• NCI Uterine, Endometrial - https://www.cancer.gov/types/uterine and https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq
• NCI Uterine, Sarcoma - https://www.cancer.gov/types/uterine and https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq
• Foundation for Women's Cancer (2017): Endometrial Cancer- Your Guide
• Peach Outreach
• Uterine Cancer Awareness Network
• ECANA: Endometrial Cancer Action Network for African-Americans 
• Foundation for Women's Cancer Uterine Cancer Survivors Course 2013 - Videos
  
• Rare Forms:
• Uterine Carcinosarcoma/MMMT http://gcsproject.org/carcinosarcoma-facts/
• Endometrial Stromal Sarcoma http://ess-sarcoma.com/
• Leiomyosarcoma: http://lmsdr.org/ and http://nlmsf.org/
• Sarcomas Overall: https://sarcomaalliance.org/ and https://www.curesarcoma.org/ 

Christina, #gyncsm co-founder

 

July 8, 2020 - Gyn Cancer Research News and Reading Scientific Posters Chat

This month's chat was organized in two parts. During the first part we discussed gynecologic cancer study results presented at this year's virtual ASCO meeting. During the second part we welcomed Kimberly Richardson @KDRichardson924, creator of the Survivors Advising Scientists Educational Program (SASEP), as well as the SASEP Program presenters @UICMSTP, graduate students Benjamin Gordon, Tova Bergsten and Casey Blaha from the University of Illinois at Chicago as they shared with our community How to Read Scientific Posters using two posters from the virtual ASCO Annual Meeting. We had 26 participants and 1.7 million impressions. You may read the transcript here and the analytics here. 

Some highlights of the chat are provided below. 

T1: Whether or not a woman should have a second surgery for ovarian cancer continues to be debated. What does the most recent research suggest and what do women need to consider?

• Two presentations at #ASCO20 - Complete Cytoreductive surgery is crucial in improving outcomes (Desktop III and SOC Studies) Patients with surgery and incomplete resection had worse outcomes (median 28.8 months). https://meetinglibrary.asco.org/record/185438/abstract
• Three trials have looked at this question all with slightly different patient enrollment in different environments. To distill the results the decision for secondary cytoreduction for women with #ovariancancer comes down to careful patient selection.

T2: PARP inhibitors took center stage again in the care of women with ovarian cancer. With one study reaching its goal and one that did not, what do women need to know?

• The final overall survival (OS) results from SOLO2/ENGOT-ov21 maintenance olaparib study showed an improvement of 12.9 months in median OS vs placebo. 1/2
• These patients all had germline BRCA mutations and only 38% of the patients receiving placebo went on to receive a parp later. This leaves HUGE questions about the sequencing and timing of parp inhibitors for women with #ovariancancer.
• 2/2 A phase III PARP study compared olaparib to cediranib /olaparib to standard platinum chemo (SOC) in recurrent platinum-sensitive #ovca . Cediranib /olaparib demonstrated similar activity to SOC in relapsed platinum -sensitive ovca but did not meet the primary endpoint of improved progression free survival.

In other news from ASCO, the #gyncsm community had an online #ASCO2020 abstract: Abstract e14113 Social media and gynecologic cancers: The impact of Twitter https://meetinglibrary.asco.org/record/187383/abstract .

Note: In the coming months, we’ll have the chance to discuss more gyn cancer research as we chat about endometrial cancer (Aug 12) and rare ovarian cancers (Sept 9). 

Moving on to the Survivors Advising Scientists Educational Program (SASEP) . 

T3: What is the "Survivors Advising Scientists Educational Program”? What led to its development?

Survivors Advising Scientists is a program initiative I [Kimberly Richardson] developed while participating in NCCS ELEVATE Ambassador Program last year.

T4: What topics do the SASEP modules cover? Where can patients go to learn more about the program? 

• The topics are designed to introduce important scientific concepts so cancer research advocates and patients can participate in scientific dialogue and important decision making. The modules cover the following:
• 1.Scientific Hypotheses 2.Components of a Hypothesis 3.Exp. Variables 4.Confounding Variables 5. Exp. Errors 6.Stat Significance 7.Types of Clinical Studies 8. Bias and Randomization 9. Read Scientific Poster 
• Additionally, we are currently looking for more content ideas. Please email us at SASEP@UIC.edu for any suggestions. You can access the videos here: https://sasep.typeform.com/to/kyOKes

T5: Let’s talk about the module on “How to Read a Scientific Poster”. What are the main points patients/advocates should consider when reading a scientific poster presented at an annual meeting like ASCO or SGO?

• the direction in which sci. posters are typically read is from top to bottom, left to right. Some conferences will have requirements that all research presenters must follow. For ASCO’s conference, all main findings must be placed in the middle of poster.
• The next and one of the most important pieces of a poster is the hypothesis which is usually found in the top left corner. The hypothesis is the an educated guess the researchers use to try to answer a scientific question.
• Some of the more interesting parts of a poster are the results or data, which are usually found in the center column/s of a poster. This section shows readers what information the researchers gathered/learned as a result of their experiments.
• If you’re overwhelmed reading a poster, another good place to look is the conclusions section, usually found in the bottom right corner (for ASCO, in the center column). This area summarizes the results of the study and may point out what is left to do.

T6: This poster from #ASCO2020 reports on the low rate of BRCA testing for patients with ovarian cancer. 

Using this as an example, can you walk us through how an advocate/patient/survivor could read and understand it?

• Some posters may be intimidating with jargon and lots of numbers/data. But following simple steps can help break concepts down so you can begin to understand the “big picture” of the study.
• Title: the title of this poster makes it clear the topic is about the low rate of testing for BRCA1/2 mutations in ovarian cancer patients, but we need to read a little more to get more information.
• In this poster, the next big section that catches your eye is the paragraph in the center. You would most likely read this summary first to get the “take home” message, then continue to read the poster normally.
• Background: this section gives a brief introduction to ovarian cancer and the two genes of interest. Here we learn these genes increase the risk of likelihood of developing ovarian cancer.
• Methods: this section has a flow chart explaining the process of data collection. This is not the most important part if you’re reading to find results, but it can provide a lot of information about how well the study was designed.
• Method 2: You’ll also see a demographics table on the far right of the poster. This information could be considered part of the methods, since it is describing the body of patients included in the study.
• Results: this section is in the bottom left - which is a little unusual but looks like it was done for spacing purposes. There is also a large results box in the middle of the poster - designed to draw attention to the “take home” message quickly.
• Discussion: this section is describing the results or conclusions of the research. This is also sometimes called “conclusions”, but it is very important because it shares results and puts them into context.
• Discussion 2: This poster shows that only a very small percentage of patients with ovarian cancer had a documented test for BRCA1/2 mutation, even though guidance suggests that all patients should receive this test.

T7: Here is another poster from #ASCO2020 discussing early-line treatment for endometrial cancer. 

Using the tips from your module, what are the key points to learn from this poster? 

• Title tells us that a drug combination (Lenvatinib + Pembrolizumab) is being tested as early treatment for endometrial cancer. If these therapies r unfamiliar to you, you can ask the presenter for more information or look them up on google scholar or pubmed.
• The goal of the study is to evaluate the safety and efficacy of this drug combination. They use the word “post hoc” analysis, which means the clinical trial has already been performed and now they are analyzing the data.
• Post-hoc means they are not stating a hypothesis as they would if they were currently designing the clinical trial (eg, combination therapy will lead to increased overall survival compared to standard chemotherapy in patients with endometrial cancer).
• Methods: Here we see the researchers are analyzing data from KEYNOTE clinical trial (NCT02501096). The “overall population” is the larger group of patients with endometrial cancer. Subgroup 1 is small subset of those patients who haven’t received much treatment
• Methods 2: This study is using post-hoc (after trial completion) analysis to compare the effect of the treatment in subgroup 1 and the overall population to determine if it would work as an early-line treatment.
• Results: Efficacy is the key word for this poster (bottom left corner) - did the drug combination being tested work? U can see that 36% of the overall population had a response to the treatment - or the treatment worked to improve disease state in 36% of patients
• Safety: Since this poster is about a clinical trial, this section is important to include information for both clinicians and patients. The safety profile of the subgroup population matches the overall population and no new safety concerns were found.
• Conclusions: The conclusions are found right in the middle in large font - designed so that they are easy to find. 
• Conclusions 2: The conclusion is that the treatment (lenvatinib + pembrolizumab) seems to work in this study for this population (advanced endometrial cancer that is not MSI-H or dMMR) as a method of early-line treatment.And 26% of patients in subgroup 1 responded.

We were honored to feature one of these great new SASEP modules during this chat. Thank you Kimberly Richardson, Benjamin Gordon, Tova Bergsten and Casey Blaha for taking the time to join us and share such helpful information with the #gyncsm community. You may find the modules at https://sasep.typeform.com/to/kyOKes. 

Save the date for our next #gyncsm chat Wed Aug 12 at 9pmET on Endometrial Cancer - Risks, Symptoms, Treatment.

See you then - Stay safe. 

Dee 

#gyncsm Co-founder

Gyn Cancer Research News and Reading Scientific Posters Chat July 8

During this month's #gyncsm chat (Wednesday, July 8, 2020 at 9pm ET) we will discuss gynecologic cancer research presented at this year's SGO and virtual ASCO meetings as well as learn about How to Read Scientific Posters.

To lead the second part of the chat, we are pleased to have Kimberly Richardson @KDRichardson924, creator of the Survivors Advising Scientists Educational Program (SASEP), as well as the SASEP Program presenters @UICMSTP, graduate students Benjamin Gordon, Tova Bergsten and Casey Blaha from the University of Illinois at Chicago joining us.

They will share information about SASEP and then provide participants with tips on how to read a scientific poster. We'll use posters from #ASCO20 that provide gyn cancer information as examples.

We hope you can join us on Wednesday, July 8th at 9pm ET (8pm CT, 6pm PT) for this informative chat.

Topic Questions

T1: Whether or not a woman should have a second surgery for ovarian cancer continues to be debated. What does the most recent research suggest and what do women need to consider?

T2: PARP inhibitors took center stage again in the care of women with ovarian cancer. With one study reaching its goal and one that did not, what do women need to know?

T3: What is the "Survivors Advising Scientists Educational Program”? What led to its development?

T4: What topics do the SASEP modules cover? Where can patients go to learn more about the program?

T5: Let’s talk about the module on “How to Read a Scientific Poster”. What are the main points patients/advocates should consider when reading a scientific poster presented at an annual meeting like ASCO or SGO?

T6: This poster from #ASCO2020 reports on the low rate of BRCA testing for patients with ovarian cancer. Using this as an example, can you walk us through how an advocate/patient/survivor could read and understand it?

T7: Here is another poster from #ASCO2020 discussing early-line treatment for endometrial cancer. Using the tips from your module, what are the key points to learn from this poster?

Dee
#gyncsm co-founder

University of Pittsburgh - HELPeR Study

We are happy to support our friends at the University of Pittsburgh by sharing an opportunity to be part of the University's  HELPer (Health E-Librarian with Personalized Recommender engine)study. Dr. Heidi Donovan (@HeidiSDonovan)  and Dr. Young Ji Lee (@YoungJiLeePitt) are funded by the National Library of Medicine to develop a virtual librarian system for ovarian cancer patients and caregivers. Please find information from Dr Lee below.

Currently many patients and caregivers who sought health information on the web reported feeling overwhelmed by the vast amount of unfiltered information and unqualified to determine the quality, and relevance of the information. The goal of HELPeR (Health E-Librarian with Personalized Recommender engine) study is to build a virtual librarian system that suggest information for ovarian cancer patients and caregivers reflecting their needs. We are especially interested in what information is most valuable to you when you are searching for online information, support, and resources related to ovarian cancer.

We look forward to seeing you in July for our chat on Gyn Cancer Research News. 

See you then, 

Dee and Christina

May 13, 2020 Chat - Side Effects of Surgery / Radical Hysterectomy

Tonight's chat topic was Side Effects of Surgery / Radical Hysterectomy. We welcomed twenty seven participants, some regulars and a few new to chats, to discuss this important topic. You may read the complete transcript here and find analytics here.

Below you will find some highlights for each topic question. Resources can be found at the end of the post.

T1: Most gyn cancers are treated with surgery. What types of surgeries can women diagnosed with, or at high risk for, the different gynecologic cancers expect?

• T1: For cervical cancer or pre-cancer, there are many types of procedures and it can get confusing. @StopHPVCancer just shared this resource from @AmericanCancer today that gives an overview: #gyncsm Surgery for Cervical Cancer https://www.cancer.org/cancer/cervical-cancer/treating/surgery.html
• A1: Surgery for gyn cancer usually involve removal of some part of the female reproductive tract. The ovaries, uterus, cervix, vagina or vulva. And may involve removal of more than one of these organs as well as lymph nodes and other biopsies.
• A1: #Previvors may consider a risk-reducing salpingo-oophorectomy--the removal of (healthy) ovaries & fallopian tubes to reduce the risk of ovarian cancer. A helpful resource for more info: https://www.facingourrisk.org/understanding-brca-and-hboc/information/risk-management/oophorectomy/ #gyncsm #HealthComm #HereditaryCancer #GeneticRisk
• T1: Although rare, #sarcoma can arise anywhere in the body, including a woman's reproductive tract. Surgery is standard. But some women may get radiation or chemo beforehand in hopes of reducing a large tumor that affects other organs. #gyncsm
• t1 as per @CancerDotNet  Tumor removal, Debunking, Palliation Surgery, Laparoscopy surgery, laser surgery, /cryosurgery, Different cancer types-ovarian cancer, uterus cancer just naming a few.
• @StopHPVCancer @AmericanCancer #gyncsm agree good resource! . Can be confusing especially in #cervicalcancer but have your md review types and indications; many different options depending on fertility preferences, invasive vs. precancer(severe dysplasia); age;

T2: What are the differences between Minimally Invasive Surgery (MIS) and Open surgery? How does the type of surgery impact outcomes and side effects?

• Minimally invasive surgery is either laparoscopic or robotic surgery. It means small incisions, less blood loss and fewer complications. But this has to be balanced with long term oncologic outcomes. We still want patients to get the best possible cancer surgery. #gyncsm
• Yes patient factors must be considered as well - prior surgery, location and size of the tumor. Surgical plans should be individualized. #gyncsm.
• There is now a lot of data supporting that for most women with #cervicalcancer minimally invasive surgery leads to worse survival - the evidence is from many sources including clinical trials and population data. #gyncsm.
• Some surgeons are still advocating for MIS for cervical cancer and in certain cases this might still be an appropriate decision. But this requires shared decision-making. And of course if your surgeons recommendations don't sound right get a second opinion! #gyncsm
• T2 balancing long term goals of surgery
• T2: There are no foolproof tests to detect uterine #leiomyosarcoma before surgery. Women face greater risk of metastasis & death if they have MIS with power morcellation. Less research on tumors cut by hand. #gyncsm

T3: What are some important things for women to consider before surgery?

• T3 personal risk. Recovery time. Medications
• risks/benefits, advance directives, durable power of attorney, and support systems.
• Those at risk for #HereditaryCancer may consider fertility preservation and assisted reproductive technologies (aka ART). Here's another helpful resource, which provides an overview: https://www.facingourrisk.org/understanding-brca-and-hboc/information/fertility-parenting/fertility-preservation/index.php #GeneticRisk #FamilyPlanning #HealthComm
• The research on outcomes point to involving a gyn-oncologist in the surgery. @ocrahope has a good overview - Why should a woman who has indications of ovarian cancer seek referral to a gynecologic oncologist as soon as possible? https://ocrahope.org/patients/about-ovarian-cancer/symptoms-and-detection/about-gynecologic-oncologists/ #gyncsm
• T3: Here's a more scholarly article re: The Relevance of Gynecologic Oncologists to Provide High-Quality of Care to Women with Gynecological Cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712269/
• T3 - before surgery things for women to consider are goals for treatment, personal goals, quality of life, what is she willing to live with, long term side effects, risk of recurrence, subsequent tx..
• It may also be helpful to talk to your partner WITH your healthcare provider to discuss each other's goals, desires, needs, etc.
• Yes for woman with #ovariancancer outcomes are improved if they see a gynecologic oncologist with their initial diagnosis. Yet nationally, fewer than half of ovarian cancer patients ever see a gynecologic oncologist. #gyncsm

T4: Many women experience early menopause after having their ovaries removed during surgery. What are ways to manage menopause symptoms?

• I've heard too many stories of women who were completely unprepared for surgical menopause and their care team hadn't really covered it. Really important also in previvor care and decision making.
• T4. Ice packs & a sense of humor #gyncsm
•  Some women may still be candidates for menopausal hormone therapy even after a gyn cancer diagnosis if their ovaries have been removed. It's worth discussing with your doctor.
• surgical menopause- very critical/should be a very important part of consent process; address what to expect and how you could address specific symptoms ex. sexual function; vasomotor/hot flashes; etc; medical vs non medical interventions depending on surgery indication
• T4: Some women may be able to take hormones, for those whom hormones are not safe management can be difficult. Some antidepressants can help, accupuncture may be worth a try and no one ever likes this answer but... exercise may be helpful. #gyncsm
• elimination of foods. Having a fan bedside to help with hot flashes. Air conditioning. Layered clothes. Acupuncture possibly.
• 4: Women with low-grade endometrial stromal #sarcoma may go on Megace or other drugs to control their hormones.
• T4: #gyncsm ; great info for women and cancer ;menopause ; sex and cancer; and much more ⁦@drmonicaxmas⁩ ⁦@WomanLab_⁩ ⁦@stacylindau⁩ ; love these resources , MDs and team! https://womanlab.org/menopause-can-be-complicated-non-hormonal-treatments-shouldnt-be/
• T4: A lot of women who have radical hysterectomies will need to use dilators to keep their vaginas from shrinking. Don't have sex if it's painful (unless you're into that). Lubricant is your friend. #gyncsm

T5: What are some of the physical side effects, both short-term and long-term, from surgery related to gyn cancers? What methods and therapies are recommended for dealing with these side effects?

• #gyncsm numbness, bleeding, infection, lymph edema, bowel obstruction, dietary concerns, One can recommend Palliative Care, medication, nutritional consult, spiritual, and find a social worker to navigate, facilitate and organize.
• Yes, palliative care really important. These are just the surgery side effects... also can be dealing with chemo, radiation, and more...
• There are some pelvic Physical therapy exercises that can help . I had GI issues for a long time after my surgery. Diet changes ( higher fiber) helped me with that. #gyncsm
• T5: Incontinence is my very least favorite side effect.
• Lymphedema can be quite difficult to manage and is typically worse for women who have had pelvic surgery and radiation. physical therapy can help but is a commitment
• T5. INSOMNIA also #gyncsm
• many patients have sexual side effects (low libido, painful intercourse) but patients often feel uncomfortable discussing this with their physicians. a physical therapy referral for this can be very helpful. #gyncsm
• T5. I like https://lmsdr.org/ for info on #leiomyosarcoma, including gyn primaries. I think it's harder to get info on other gyn sarcomas. But women can turn to peer support programs such as @fflcancersprt, @ImermanAngels & @MDAndersonNews' MyCancerConnection.
• T5: For those of us who had vaginal cancers and were single, the thought of dating can be daunting. Now that I'm 61, however, I find men are less picky.

T6: What are some of the emotional side effects from surgery related to gyn cancers?  What are some helpful resources and tips for these?

• #gyncsm depression, feeling not whole. Anxiety.
• T6 Emotional side effects can include, depression, anxiety about sex, anxiety about scarring, etc. #gyncsm
• Article via @cure_magazine - Patients Speak Up About Gynecologic Cancer Side Effects https://www.curetoday.com/publications/cure/2019/womens-cancers/under-the-spotlight-patients-speak-up-about-gynecologic-cancer-side-effects #gyncsm

T7: Have there been impacts from COVID-19 on surgeries - timing, type recommended, length of surgery, special precautions, other impacts?

•  I know that a lot of prophylactic surgeries were either cancelled or delayed. #gyncsm
• T1 In Maryland, many surgeries were delayed or postponed due to the crisis. #gyncsm
• A7: I have not personally been affected but know some who have had their preventive surgeries (i.e., BSO) delayed. Also, others have told me their fertility preservation has been delayed/postponed due to COVID-19. #gyncsm #ayacsm #familyplanning #HealthComm

We end all our chats with TIL - Today I Learned. Here are a few from tonight.

• TIL: About lymphedema after GYN cancer surgery, the long term physical and emotional side effects of surgery, and once again the lack of communication with some about early menopause. I appreciated all of your thoughts so much tonight! #GYNCSM
• TIL that we as health professionals have some work to do to make sure that women are fully aware of the long lasting effects surgeries (and other treatments) may have. #gyncsm

There will be no #gyncsm chat in June. Save the date for our next chat Wednesday July 8, 2020 at 9pm ET. We also invite you to check out these other great healthcare conversations happening on twitter: http://gyncsm.blogspot.com/2019/01/looking-for-cancersocialmedia-chat.html #bcsm #btsm #lcsm #mmsm #ayacsm #PANCChat #hpm #hcldr #cureconnect #wegohealthchat #patientchat


Wishing wellness and safety for all!

Dee and Christina 


RESOURCES

Foundation for Women’s Cancer @GYNcancer Postoperative pain management https://www.foundationforwomenscancer.org/wp-content/uploads/2019-FWC-Patient-Education-Handout-Postoperative-Pain-Management-10.21.19.pdf 

@BasserBRCA preparing for surgical menopause. https://www.basser.org/news-and-media/blog/2019/23/what-you-need-know-about-surgical-menopause

"Racism in Healthcare Is Putting Black Women's Lives at Risk" https://www.oprahmag.com/life/health/a23100351/racial-bias-in-healthcare-black-women/

@CancerDotNet - cancer surgery side effects https://www.cancer.net/navigating-cancer-care/how-cancer-treated/surgery/side-effects-surgery

Post hysterectomy exercise https://www.livestrong.com/article/396141-what-exercise-can-you-do-after-hysterectomy/ @livestrong

Patients Speak Up About Gynecologic Cancer Side Effects https://www.curetoday.com/publications/cure/2019/womens-cancers/under-the-spotlight-patients-speak-up-about-gynecologic-cancer-side-effects

Side Effects of Surgery / Radical Hysterectomy #gyncsm Chat May 13, 2020

This month the #gyncsm community will be discussing the Side Effects of Surgery and Radical Hysterectomy during our May 13, 2020 (9pm ET) chat. Most gyn cancers are treated with surgery.

Patients with a gyn cancer may have surgery to diagnose cancer, to stage cancer, to remove cancerous tissue or to alleviate side effect caused by tumors. While some surgery requires large incisions, there are also minimally invasive surgeries such as laparoscopic surgeries used for gyn cancers. (Cancer.net)

During Wednesday's chat we will cover the following topic questions:

T1: Most gyn cancers are treated with surgery. What types of surgeries can women diagnosed with, or at high risk for, the different gynecologic cancers expect? 

T2: What are the differences between Minimally Invasive Surgery (MIS) and Open surgery? How does the type of surgery impact outcomes and side effects? 

T3: What are some important things for women to consider before surgery?

T4: Many women experience early menopause after having their ovaries removed during surgery. What are ways to manage menopause symptoms?

T5: What are some of the physical side effects, both short-term and long-term, from surgery related to gyn cancers? What methods and therapies are recommended for dealing with these side effects?

T6: What are some of the emotional side effects from surgery related to gyn cancers?  What are some helpful resources and tips for these?

T7: Have there been impacts from COVID-19 on surgeries - timing, type recommended, length of surgery, special precautions, other impacts?

Christina and I look forward to having you join us on May 13th.

(updated 5/13/2020)

Dee
#gyncsm Co-Founder