PARPS and You : How Do You and Your Doctor Decide? November 11, 2020 Chat

 

Recently Drs. Laura Havrilesky, Shelby Reed and Laura Fish reached out to our #gyncsm Twitter community to discuss the development of a shared decision aid for use by women with ovarian cancer who are considering PARPs as maintenance therapy. The first step involves finding out what ovarian cancer patients know and think about PARPs. We love their focus on shared decision making and asking patients! So we have invited them to be our guests for our Wednesday, November 11, 2020, 9pmET #GynCSM Twitter Chat. 

We invite Ovarian Cancer patients, survivors and advocates to join us for this special discussion as we cover the following topics:

T1: How have you gotten information about PARP inhibitors? Have you seen advertisements (print, TV, social media)? How do social media sources play a role in your information gathering about possible treatments?

T2: Are PARP inhibitors a better fit for certain women than others?

T3: What are the pros and cons of maintenance therapy with PARP inhibitors?

T4: Is there anything you wish you had known earlier about PARP inhibitors?

T5: How do out of pocket expenses play a role in decisions you make about taking a PARP inhibitor?

T6: Are you aware of the current ASCO guidelines about PARP inhibitor maintenance therapy?

We look forward to seeing you all on November 11th!

 

Dee and Christina 

#GYNcsm Co-Founders

What I Didn’t Get to Say

 

We are honored to share this post from recent chat guest Adrienne @AdrienneEcana who is a survivor of both endometrial cancer and ovarian cancer. She is a patient advocate and serves as an ambassador for the Endometrial Cancer Action Network for African Americans (ECANA).





Recently I was a guest for a live chat with #gyncsm (Gynecologic Cancer Social Media). I was honored to be asked because I had never done a live chat before, so I spent the day before writing and re-writing my answers to frame them correctly. I had a lot I wanted to say about how I felt my journey to diagnosis took longer than it needed to. I wanted to speak about how the invisible barriers that kept me from getting diagnosed sooner were just as important as the evident ones. But I soon found out that a tweet chat was not a platform that would readily support the way I wanted to tell my story. Even though I prepared for it, I quickly became flustered and started to feel a little inadequate by the lack of depth in my responses. So instead of trying to paint the bigger picture, I defaulted to one or two line answers that did little to bolster the points I was trying to make. My lack of familiarity in this space had me at a disadvantage and I couldn’t help but think that this was exactly how my cancer journey began. The countless doctors, gynecologist and emergency physicians that I readily opened my stir up supported legs to made little space for me to do the same with my mouth. My time there was always rushed and my words tripped over each other coming as I tried to describe how I felt about the changes my body was taking me through. It was dizzying.

In 2015, my body started authoring a story of menorrhagia confusion that left my head spinning. I never knew what to expect month to month. I began seeing a myriad of doctors but their level of concern never seemed to match my own. And each time I had left from being in front of one doctor with no answers, it would only leave me with more angst about having to seek out another. So, as I went from doctor’s offices to emergency rooms trying to string together words, dates, times and events that would give my story effective credibility, I began to realize that it just wasn’t going to be enough. The fact that my father died of colon cancer wasn’t enough. The fact that I had had a history of ovarian cancer wasn’t enough. The fact that I had been missing periods for months and they would then be marked by heavy bleeding for days wasn’t enough. The fact that it was almost always accompanied by debilitating pain that kept me out of work wasn’t enough. It only became enough when on March 28th 2016 I declared “This is enough”!!

I was away on a week long job orientation where the employer offered me health insurance day one of the job. I was ecstatic because I had lost insurance coverage with my previous employer of five years after the ACA allowed for businesses with less than 50 employees to have their workers find “affordable” care on the exchange. To make it work the Home Health and DME company had to separate into a two part business. The home health or nursing side kept their insurance because they had more employees but the DME side I was on was sent to the exchange. I was a young 40 something with pre-existing conditions and no dependents. It turned out to not be so affordable for me so I went without. On day two of my orientation, I woke up that morning met with a heavy flow of menstrual blood and I knew two things. The first was that I had had enough of the guessing game and two I finally had insurance to put it to an end. Admittedly, I was scared. It felt ominous and foreboding somehow, I knew this period was different because I hadn’t had one in months. I was told I was peri-menopausal and that my flows would become lighter and lighter. This didn’t look or feel like that all. For days I bled so heavily it soaked through two pads and my undergarments. Honestly, it felt more like I was having a miscarriage. Weeks later, when I was finally able to see a specialist, I was still bleeding. Despite the level of discomfort that it came with, I asked to have an internal exam anyway and held my breath listening for the words I knew would come. I breathed a sigh of relief as she said “I think it's time to schedule an ultrasound and biopsy to see if there is a possibility of cancer”. Somebody finally said it. Relief flooded over me after knowing that I wasn’t going to be coaxed or eased out the door by another conversation about fibroids or peri- menopause. For the first time I was being educated on how my high risk history coupled with my symptoms was more than likely the beginnings of what has now become my cancer chronicle. For months I had been trying to make my symptoms mean something to someone and this is what it took for someone to go the extra mile. Was it having the right amount of blood? Having the right amount of insurance or finally having the right doctor? Maybe it was the combination of all three met with the right amount of determination in my voice that this time I wasn’t walking away without a clear plan of action.

The story I’m telling however is not a new one. It’s been told by numerous others before me. So I am just one of many and whether by default or design, black women tend to share the common problem of aggregation when it comes to their reproductive health. Most of us at one time or another have been told that the culprit behind our monthly state of misery was due to the high incidence of fibroids that occur in our community. That it was likely due to our diet or DNA. We walked away with never any real plan of treatment and it was a risk factor we learned to accept even against our own self interest and to sometimes our own detriment. But for now, for me at least, I’d get some answers. Though I knew it would be nothing that I’d want to hear, I did take some solace in knowing that all the pain, all the abnormal bleeding, all the bloating and unpredictability had a name.

I was diagnosed with Endometrial Cancer stage IIIC in June 2016. I had a full hysterectomy that month to be followed by 6 rounds of carbo/taxol and 25 rounds of pelvic radiation. It’s funny that I felt almost relieved; knowing what treatment I was going to have to face felt less problematic than getting to that point. There is a settling that happens in resolution. It’s the not knowing that’s troublesome and my mind still tends to grapple with the one big problem throughout the beginning of my journey; the absence of any real urgency around what I now know were early symptoms of cancerous changes happening inside of my uterus. This begs the question of how could life threatening changes hide in plain sight from the very people I trusted to know what was going on when I didn’t have a name for it? To that end, I don’t think of it as an incidence to which one should apply blame. Only that it was a series of missed opportunities to engage in a power sharing conversation about my reproductive health and the direction of how my plan of care should evolve.

Now, in hindsight, I try to think about what more I could have done to have enriched those conversations. How I could have been more educated about endometrial cancer to where I would have been able to initiate the conversation about my own risks. If I had, would that have changed the dynamic? Would those uterine fibroids and ovarian cysts that appeared on ultrasounds somehow be seen as more menacing to the specialists? Would the heavy bleeding be given more thought provoking responses because I came more equipped in how to talk about it? Did I miss my window of opportunity by trying to paint the bigger picture when I was the bigger picture? I should have challenged them to see me, forced them to hear me, cajoled them into believing me. But if showing up as my Black self, with my high risks and cancer history; laying down my father’s death to colon cancer hadn’t gotten their attention there was not much left. Months of concern that drug me in and out of doctors offices remained void of validation that would have opened doors for questions I never considered before I had to jump feet first into the battle of my life.

As I am writing this, I realize that advocating for myself is where I should have prepared better. It’s where I should have recognized that the barriers weren’t invisible at all. They were all just the metaphorical walls of communication waiting to be scaled by my determination to fight for my reproductive health. I can see now that my cancer journey began long before I was ever diagnosed and had I known, I would have prepared for it the way I prepared for that tweet chat. I would have stated and re-stated all the important points first, using my space more wisely. I wouldn’t rush myself or care how long it took, I only would have cared that I was heard.

September 9, 2020 - Rare Ovarian and Rare Gynecologic Cancers Chat

Tonight we were joined by 34 participants - survivors, advocates and health care providers - to chat about Rare Ovarian and Rare Gynecologic Cancers. While the NCI defines a rare cancer as a cancer that occurs in 15 out of 100,000 people each year, other definitions are used by different organizations and in other parts of the world. 

Advice about finding health care providers who treat rare cancers included: 

"Finding providers with experience with these cancers can be tough, but can be key to overall treatment and survival per studies." 

"It is really important to ask your provider how many of these cases they have seen - and consider referral to a cancer center that has expertise. " 

"With the rapid adoption of Telehealth, my hope is that all rare cancer patients will soon be able to consult (at least by video) with an expert in their disease."

You may find the transcript here and additional analytics here. 

Here are some highlights from each topic question. 

T1: What are the rare ovarian cancers types? How do they differ from the more common type? How do treatment and symptoms differ? 

— Sarah Temkin (@temkins) September 10, 2020

• T1 Low grade #ovca - low chromosome instability, KRAS, BRAF, ERBB2 mutations with slow tumor development.  https://t.co/T4bJO8Rloa
• T1 Low grade patients receive either carboplatin + paclitaxel followed by endocrine therapy or endocrine therapy alone. Endocrine therapy: letrozole , anastrozole, tamoxifen  https://t.co/2wimorqtmh
• Some rare subtypes of ovarian cancer may be associated w/ (also rare) hereditary cancer syndromes while other rare subtypes have no known hereditary cause. Ask your healthcare team if you should meet w/ a genetic counselor for a hereditary cancer risk assessment #gyncsm
• Facebook has 2 groups for ovarian germ cell patients - Germ Cell Ovarian Cancer Support Group and Germ Cell Tumor Parent Network. 
• Our research center @sloan_kettering seeks to understanding how patients with ovarian cancer differ with the goal of developing more customized therapies. As below, we have now genetically analyzed over 1800 ovarian tumors. 
  
  
  

T2: Two other rare gyn cancers are vulvar and vaginal cancer. How are they diagnosed and how significant is the role of surgery? Any special treatments available for those cancers?

• A2: Vulvar and vaginal cancer are rare. Ask your doctor if something doesn't feel right (especially after menopause)! You might need a biopsy. Treatment is very individual based upon the site of the cancer
• Anatomically surgical treatment might be limited by how close the bowel and/or bladder can be to the tumor. Often radiation with or without chemotherapy is recommended.
• T2. Different types of #sarcoma can also occur in the vagina (as mine did) and the vulva. When systemic therapy -- such as chemo & targeted treatment -- is needed, sarcoma is generally treated by its subtype, rather than its location in the body. 
• T2 Vulvar Cancer Symptoms: A lump or growth in or on the vulvar area or groin, patch of skin differently textured or colored, Persistent itching, pain, soreness, or burning in the vulvar area @cancerdotnet 
• I teach our trainees, when in doubt - biopsy. Vulvar cancer can look very different for each patient. Better to be conservative!

T3: Last month we talked about endometrial cancer. How does uterine sarcoma differ from other cancers of the uterus?

• Different subtypes of #sarcoma are often treated differently. They are often not identified until after surgery. A woman with gyn sarcoma, which can be aggressive, may want to talk to a sarcoma medical oncologist
• T3: Thanks to @SuzieSiegel we have these resources listed on the #gyncsm blog: Uterine Carcinosarcoma gcsproject.org/carcinosarcoma… Endometrial Stromal Sarcoma ess-sarcoma.com Leiomyosarcoma: lmsdr.org and nlmsf.org Also for sarcomas overall: sarcomaalliance.org and curesarcoma.org 
• We also have hundreds of women with uterine #leiomyosarcoma on the Facebook page for LMSDR.org. #gyncsm
• A3: Most cancers of the uterus arise from the endometrium. But sarcomas typically arise from the myometrium - either the muscle or the "glue" of the uterus.

T4: In the past we have talked about ovarian cancer developing in the fallopian tubes yet there is also a fallopian tube cancer. Does it differ from ovarian? Do treatments differ?

• In general, fallopian tube cancers are treated just like #ovariancancer - similar surgery, chemotherapy, and targeted therapy options 
• Fallopian tube, ovarian and primary peritoneal cancer should be bundled by their histologic appearance (how they look under the microscope) rather than the site at which the tumor is identified. If you look hard enough most ovarian cancers will have originated in the tube 
• T4 This gives a good overview of Treatments for Fallopian tube cancer  https://emedicine.medscape.com/article/2056981-overview

T5: What is Gestational Trophoblastic Disease? Are there symptoms? What are the best treatments?

• T5 via @DanaFarber there are 3 types of GTD : Hydatidiform mole, or molar pregnancy, Choriocarcinoma, Placental-site and epithelioid trophoblastic tumors 
• A5: Gestational trophoblastic disease is a neoplasm arising from the placenta. For some women this will resolve with time, others need treatment with chemotherapy. 
• Gestational trophoblastic disease is an abnormal growth & development of the cells that usually form the placenta during pregnancy. The most common initial symptoms are heavy bleeding early in pregnancy. 
• Sometimes it can be suspected on an ultrasound early in pregnancy. Usually a D&C is done to remove the abnormally developing cells. This usually is all that is needed to treat GTD.
• However, sometimes GTD can develop into an invasive cancer. There are a few types, but these are collectively termed gestational trophoblastic neoplasia.
  
• If this happens, GTN can be treated with chemotherapy (often methotrexate). In fact, GTN was one of the first cancers even to be successfully treated with chemotherapy.
• GTD — also know and complete or partial molar pregnancies — develops after 1-3 per 1000 pregnancies. The main risks include maternal age (both older and younger) and if the person has ever experienced GTD before.
  
• Rarely, this is a life threatening disease. Multidrug chemotherapy is prescribed, sometimes with radiation. Choriocarcinoma can be diagnosed anytime after a pregnancy (normal or miscarriage) and the diagnosis can be tricky.

T6: Primary peritoneal cancer is treated like ovarian cancer. How do they differ?

• Here are some PPC resources: foundationforwomenscancer.org/wp-content/upl… primaryperitonealcancer.org
• Even if you've had your ovaries removed, you could be at risk for PPC as it is related to the lining.
• T6 Here is an Article by @dorcarvajal on living with primary peritoneal. #gyncsm https://www.statnews.com/2018/10/04/peritoneal-cancer-women-men-doctors/?utm_content=buffer70cbe&utm_medium=social&utm_source=twitter&utm_campaign=twitter_organic

T7: What are the challenges of having a rare type of cancer? What are some tips and resources when dealing with a rare cancer?

• T7 Challenge- Finding other patients with the same dx to offer advice and support. When I was initially dx I had trouble finding another Stage 3 OC patient to talk to. Thankfully I reach out to @CancerHopeNet and made my first connection. #gyncsm
•  I think many of us are proponents of shared-decision making and collaboration between doctor and patient. You want a specialist with knowledge of your type of #gyncsm but you also want one that recognizes you know your body and your exact experience/goals best.

 

Christina and I are so happy to celebrate #gyncsm's 7th Anniversary with everyone tonight. 

We will not be chatting in October but look forward to seeing you on November 11 at 9pm ET when @LHavrilesky @ShelbyDReed will be joining us to get input for a shared decision aid re: ovarian cancer and PARP inhibitors.  

Stay well and safe. 

Dee

Rare Ovarian and Gynecologic Cancers

Happy Gynecologic Cancer Awareness Month! 

This month we will be chatting about Rare Ovarian Cancers and Rare Gynecologic Cancers. We hope you will join us on Wednesday, September 9, at 9pm ET (8pm CT, 6pm PT). 

Did you know that many gynecologic cancers are considered rare diseases in the US and globally? 

There will be an estimated 21,750 women diagnosed with Ovarian Cancer in the US in 2020. Eighty-five to ninety percent of all ovarian cancers are epithelial ovarian cancer. Sub-types include mucinous, endometrioid, clear cell, and undifferentiated. Beyond epithelial, cancerous germ cell tumors make up about 1-2% of ovarian cancers and sex cord-stromal tumors account for about 1% of ovarian cancers. (https://www.cancercenter.com/cancer-types/ovarian-cancer/types)

Primary Peritoneal Cancer, which develops in the lining of the abdomen and pelvis, along with Fallopian Tube Cancer are treated like ovarian cancer and are both considered rare cancers. 

About 6 of every million women in the US are diagnosed with Uterine Leiomysarcoma. (https://www.curesarcoma.org/patient-resources/sarcoma-subtypes/uterine-leiomyosarcoma/)

Gestational Trophoblastic Disease accounts for less than 1% of all gynecologic cancers. (https://www.cancer.net/cancer-types/gestational-trophoblastic-disease/statistics)

In 2020 almost 6,120 women are expected to be diagnosed with Vulvar Cancer in the US (https://www.cancer.net/cancer-types/vulvar-cancer/statistics) while 6,230 women are expected to be  diagnosed with Vaginal Cancer. (https://www.cancer.net/cancer-types/vaginal-cancer/statistics) 

Additional Source: https://seer.cancer.gov

Join us as we discuss the symptoms and treatment of these rare cancers.

T1: What are the rare ovarian cancers types? How do they differ from the more common type? How do treatment and symptoms differ? 

T2: Two other rare gyn cancers are vulvar and vaginal cancer. How are they diagnosed and how significant is the role of surgery? Any special treatments available for those cancers?

T3: Last month we talked about endometrial cancer. How does uterine sarcoma differ from other cancers of the uterus?

T4: In the past we have talked about ovarian cancer developing in the fallopian tubes yet there is also a fallopian tube cancer. Does it differ from ovarian? Do treatments differ?

T5: What is Gestational Trophoblastic Disease? Are there symptoms? What are the best treatments?

T6: Primary peritoneal cancer is treated like ovarian cancer. How do they differ?

T7: What are the challenges of having a rare type of cancer? What are some tips and resources when dealing with a rare cancer? 

We are also happy to be celebrating our 7th anniversary as a Twitter Chat Community. Christina and I appreciate the support promoting and participating in our chats through the years. 

See you on Wednesday!

Dee

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