Dec. 9, 2020 - The Needs of Young Adult Gyn Cancer Patients

The #gyncsm community was pleased to have the #ayacsm community join us for our chat on The Needs of Young Adult Gyn Cancer Patients. We had twenty-one participants. You may find a link to the complete transcript here and the analytics here (via Symplur). 

Note that AYA patients generally fall between 15 and 40 years of age. 

Here are highlights of the participant responses to the topic questions:

T1: Do gyn cancer symptoms present differently in the Adolescent/Young Adult (AYA) population than they do in the adult/older adult population?

• Similar to adults : A study done in Iran 15-35 years old in #ovca abdominal or lower back pain 52%, unusual bloating, fullness and pressure in the abdomen 37%, gastro-intestinal problems 36% physio-pedia.com/images/b/b6/Ea…
• The average age for ovarian cancer is over 50/60 but plenty of younger women get it and even children get some types. Any bleeding after menopause is a symptom that needs to get checked out for gyn cancers - so that trigger isn't there in those pre-menopause.
• The gynecologic cancer symptoms (see table) can be easy to write off as other things, so I think both young women and doctors aren't thinking "cancer" when these symptoms arise. The whole "too young for cancer" thinking needs to go. #gyncsm #ayacsm

T2: What are some unique aspects of being diagnosed with a gyn cancer ( or any cancer) as a young adult? 

• For me, fertility issues weren't addressed/taken seriously, and as a result, I was never able to have kids. It didn't have to be that way if any of my doctors over the years had remembered that I was young.
• We have unique needs like fertility, family planning, dating, sexual health, college/education, and long term side effects.
• I would think that #fertility would be a big issue 
• For me it was feeling like I didn't really fit in. The younger women with ovarian cancer typically had a different type than me. Most of the women with high grade serous are 20 years older than me.
• Isolation is HUGE for AYA’s! I have experienced it myself. It’s difficult when you don’t see your peers in the waiting room or support groups. 
• Young women have unique roles that do not mesh well with cancer treatment. Work, life, childcare. Women are used to being the caregivers in their family and having cancer is a role reversal that is very difficult. 

T3: How soon should AYA patients, or in some cases their parents, initiate a conversation with their oncologists about fertility?

• Fertility is a critical issue for #AYA pts with #gynecologiccancer no matter where the woman is in her journey- it should be discussed early and plans made! 
• Right away! Elicit the care of an #oncofertility specialist so you can make plans and protect and preserve your fertility if possible 
• Fertility should be discussed at diagnosis with anyone diagnosed with a gynecologic malignancy during their reproductive years. Nearly all treatment disrupt fertility.
• I am working towards a world where it is brought up by the care team at the very *first appointment*, large cancer center, or a county hospital. 
• T3 &4 #gyncsm #ayacsm need to address also fears/myths/biases of providers, patients, & caregivers have that if we focus or address #sexaftercancer #Menopause #oncofertiliy we are not being “aggressive” about cancer treatment ; need to lay it all out good&bad early & openly.

T4: In your experience, do providers discuss and provide resources related to surgical menopause? 

• T4 well it didn’t happen for me. Surprise! 
• Definitely have to do better. People should get the whole story from their PROVIDERS. Good/Bad. This shouldn’t be found out afterwards or from Dr Google or from social media after the fact 
• T4: I feel like this too often has been an "oh, by the way..." part of treatment planning. Maybe because if affects everyone so differently that it is hard to set expectations? Addressing surgical menopause is an area for improvement. 
• Nearly all treatments for gynecologic cancer (or pre-malignancies) have the potential to initiate menopause. This has to part of the conversation with younger patients at diagnosis. 
• I was told that a certain treatment would impact when I could get pregnant, but was never told the maintenance treatment would cause infertility. Not the same, I know... 
• My regular ob/gyn brought it up before my gyn onc did. And I was the one intiating these discussions with my gyn onc. This is an area that I feel was definitely lacking. I felt like I needed to be guided on what it does to your body over time to go into menopause before you are supposed to. I have had to teach myself.
• Treatment for menopausal symptoms is underprescribed - estrogen or other therapies may be safe. Ask your care team for your options. 
• T4 Not nearly often enough, from what our @CancerHopeNet clients tell us. Orgs like @ElephantsTea are doing good work to raise awareness and reduce reluctance to discuss openly. 
• T4 Some great resources for menopause @WomanLab_ @stacylindau @drmonicaxmas

T5: Are special support programs in place to help AYA? What about support from other AYA patients specifically?  

• T5: There's @FirstDescents for AYAs of all types of cancers.
• T5 @StupidCancer also offers programs and information stupidcancer.org 
• I think peer support is really important and is another thing that healthcare should be letting patients know about and connecting them to resources. @StupidCancer @ElephantsTea @TheSamfund @YSCBuzz and others are out there
• T5 #GYNCSM I have created my own support network of younger ovarian cancer survivors.
• The Ulman foundation provides support for AYA cancer patients. At some cancer centers these resources are kept separate from gyn patients but should be available to any young adult with cancer. @ulmanfoundation #gyncsm ulmanfoundation.org/healthcare-pro…
• T5 this @livestrong Cancer Support article is useful. livestrong.org/we-can-help/ju… #gyncsm 
• T5 #gyncsm Most big cancer hospitals have Patient 2 Patient Peer support where you can be matched with a survivor volunteer of the same-ish age/diagnosis.

T6: What roadblocks exist and what advice would you give to AYA regarding sharing their diagnosis with others - when looking for higher education, employment, dating, etc? 

• Ask for help! We will help you find resources. 
• T6: In my opinion: getting AYA as a community and group recognized by the entire oncology community. I think that’s the biggest step to getting AYA’s resources no matter where they are. 
• Don't be afraid to ask - especially the "older" survivors. I've found many were around my age at the time of diagnosis and they've been there, done that, SURVIVED that, *and* have the t-shirt.
• For career and/or legal related items, @CancerAndCareer and @TriageCancer are good resources.
• Orgs like @CancerHopeNet can provide matches based on age/dx/circumstances as well.
  

#gyncsm will be “off” in January. We look forward to chatting again on Wed, Feb 10, 2021 at 8pmET when we’ll discuss “Communication with your health care team and Asking for Supportive Care”. All welcome. 

Please note our new time to meet in 2021. 

Wishing the #gyncsm community a very Happy Holiday and a safe, healthy and Happy New Year! 

See you in 2021!

Dee 

Additional Resources

https://www.cancer.gov/types/aya via @theNCI

https://www.cancer.net/navigating-cancer-care/young-adults-and-teenagers/cancer-support-young-adults via @CancerDotNet

Livestrong  

https://www.livestrong.org/we-can-help/just-diagnosed/young-adults-with-cancer

Teenage Cancer Trust 

https://www.teenagecancertrust.org/get-help/ive-got-cancer/types-cancer/ovarian-cancer

Ovarian Cancer in Young Women 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5705514/

Ovarian Cancer Among Adolescents and Young Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7186636/

Quality of life, lifestyle behavior and employment experience: A comparison between young and midlife survivors of gynecology early stage cancers 

https://www.sciencedirect.com/science/article/abs/pii/S0090825811009516

 

Cancer Related Distress in Young Adults Compared to Middle-Aged and Senior Adults

https://www.liebertpub.com/doi/abs/10.1089/jayao.2014.0005

The Needs of Young Adult Gyn Patients - Dec. 9, 2020

 

This month on Wednesday, December 9, 2020 at 9pm ET we join together with #ayacsm co-founders, Emily Drake (@EK_Drake), cancer researcher, and Bill Paymaster (@ukfann00) of Hope For Young Adults with Cancer (@Hope4YAWC) to discuss The Needs of Young Adult Gyn Cancer Patients. It is important that adolescent and young adult patients receive age-appropriate supportive care. 

We will be using these topic questions to lead our discussion:

T1: Do gyn cancer symptoms present differently in the Adolescent/Young Adult (AYA) population than they do in the adult/older adult population?

T2: What are some unique aspects of being diagnosed with a gyn cancer as a young adult?  

T3: How soon should AYA patients, or in some cases their parents, initiate a conversation with their oncologists about fertility?

T4: In your experience, do providers discuss and provide resources related to surgical menopause? 

T5: Are special support programs in place to help AYA? What about support from other AYA patients specifically?  

T6: What roadblocks exist and what advice would you give to AYA regarding sharing their diagnosis with others - when looking for higher education, employment, dating, etc? 

For more information on Adolescent and Young Adults with Cancer visit:

• https://www.cancer.gov/types/aya via @theNCI
  
• https://www.cancer.net/navigating-cancer-care/young-adults-and-teenagers/cancer-support-young-adults via @CancerDotNet
  

We look forward to having you join us Wednesday on Twitter.  

Dee and Christina

#gyncsm Co-Founders

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

We were so happy to host Drs. Laura Havrilesky (@LHavrilesky), Shelby Reed (@ShelbyDReed) and Laura Fish (@laurafish4) to discuss the development of a shared-decision making tool for maintenance PARP inhibitors for women diagnosed with ovarian cancer. We had thirty-one participants join the chat. You may find the analytics here and the transcript here. Resources may be found at the bottom of the post. 

Here are some highlights from the chat.  

T1A: How have you gotten information about PARP inhibitors? Have you seen advertisements (print, TV, social media)? 

• T1A: research online, SGO conference 2019
• T1A: first heard about PARPi’s from a friend in the pharma industry who accompanied me to my first visit with Gyn Onc 
• T1: I've seen more and more mention of PARPs on cancer nonprofit twitter accounts. Seems like more and more studies are coming up and the science is moving faster. 
• I started visiting SHARE, OCRA, FORCE websites to learn more about PARPi’s. Then read the Phase III clinical trial reports 

T1B: How do social media sources (including online patient communities) play a role in your information gathering about possible treatments?

• T1B Although I am not on a PARP I see lots of support and info sharing in Facebook Groups, @smart_patients and @teaminspire
  
• T1B: Occasional use of closed patient groups to assess drug side effects or successful strategies to handle side effects

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

• T2 PARP inhibitors are FDA-approved for treatment of women with ovarian cancer in different categories, based on what is going on with the cancer right now and the woman’s or cancer’s genetic test status. The table below lists them. 1/4
• T2 - 3 big studies came out October 2019, showing that PARP inhibitors given as maintenance therapy after a response to frontline chemotherapy can give a woman with ovarian cancer 6 extra months on average until the cancer begins to grow again. 2/4 
• T2 Women with BRCA mutations OR genetic changes called HRD, can gain about a year of extra cancer-free time with a PARP inhibitor, while women not having any of these genetic changes in their tumor may gain no extra time at all or up to 3 extra months. 3 /4
• T2 Genetic testing and tumor testing can find BRCA and other mutations such as HRD to help determine the likelihood that taking a PARP inhibitor will have a positive impact. 4/4
  

 

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

• T3 Common side effects of PARP inhibitors are fatigue, nausea, and low blood counts such as low platelets and anemia. When taking a PARP inhibitor, a woman will need to be seen frequently at first to check the lab values and adjust doses. 1/2
• T3 This image from a presentation of the PRIMA randomized trial at the 2019 ESMO conference shows the specific side effects of niraparib (green) compared to an inactive placebo (pink). 2/2

• T3: Pros for me it was very tolerable and civilized cancer care with just a pill and few side effects. Cons: Didn't work (slowed growth didn't stop or reverse). Eyepopping Costs (covered by insurance luckily.
• T3: I didn’t see any drawbacks for myself. Weighed risks/possible benefits from the published lit. Only possible problem was $$$COST$$$

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

• T4: When I tried Naraparib it was still pretty early on and very new for approval for maintenance for BRCA wt. I knew it was less likely to work, but still disappointing - for me it was an easy and tolerable therapy. I think there is more clarity now on best use.

T5: How do out of pocket expenses play a role in decisions you make about taking a PARP inhibitor? (and you can continue w/ tweets about anything you wish you knew about PARPs)

• T5 Even though PARP inhibitors cost over $12,000 per month, insurance companies or Medicare usually foot most or all of the bill. Some women have no out of pocket expense or a very small one. However some women have monthly co-pays of over $1,000.
• T5 Here are links to PARP patient assistance sites: olaparib / Lynparza: https://www.lynparzahcp.com/ovarian-cancer/olaparib-patient-support.html        niraparib /Zejula: https://www.zejula.com/en/financial-support                               rubraca/ rucaparib: https://www.rubraca.com/ovarian-cancer/  2/2
• T5: Big decision! Medicare women aren’t eligible for manufacturer-sponsored financial assistance. Makes things difficult
• T5: My gynonc nurses helped by submitting to the drugmaker to cover some costs. It effectively covered my OOP max on my insurance, and I was not billed for my costs. Very helpful.

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

• T6 ASCO recommends that all women with advanced stage ovarian cancer who have a good response to initial chemotherapy be offered PARP inhibitor maintenance therapy and make a shared decision with her provider.
• T6 Here is a link to the full ASCO guidelines on PARP inhibitors in ovarian cancer. https://t.co/wfU3gqhkSB
• Here is a summary of the PARPi in Management of #ovca @ASCO guideline

• I wonder how that’ll make a difference in clinical practice. My gyn Onc (and others, according to their patients) don’t see much benefit for those not BRCA+ or HRD+ and don’t like to prescribe them to those patients 
• I agree there is a very important distinction here-see the replies to T2 below for different levels benefit. Thats where the "shared decision" comes in -I agree that PARPi are not right for everyone.
• Need to think about how that changes Survivorship and how pts may best cope with idea of continuing therapy instead of feeling “done”. Reinforces how important it is to understand ovarian cancer survivorship of continuum of many on and off therapy

We are so grateful for all Drs. Laura Havrilesky, Shelby Reed and Laura Fish do for patients and we look forward to the end result of their project - a Shared Decision Making Tool for women considering PARPs as maintenance therapy.

You can continue this PARP discussion at an “Ask the Experts” session on the online patient community Smart Patients (@smart_patients) starting Thursday at 1pmET. http://smartpatients.com/ovarian-cancer .

Please join us for our next #gyncsm chat Wednesday, December 9, 2020 at 9pmET as we discuss The Needs of Young Adult Gyn Cancer patients (#ayacsm).

Happy Thanksgiving!

Stay safe and see you next month!

Dee 

RESOURCES

Efficacy | ZEJULA (niraparib) https://t.co/f9iMWl8Oce

@FacingOurRisk Maintenance Therapy for Ovarian Cancer https://www.facingourrisk.org/info/risk-management-and-treatment/by-cancer-type/fallopian-ovarian-peritoneal/maintenance-therapy

PARPs Frontline Maintenance Therapy Transforms Advanced Ovarian Cancer With PARP Inhibitors https://www.onclive.com/view/frontline-maintenance-therapy-transforms-advanced-ovarian-cancer-with-parp-inhibitors

Using PARP Inhibitors in Frontline Maintenance Therapy for Ovarian Cancer https://www.cancernetwork.com/view/using-parp-inhibitors-in-frontline-maintenance-therapy-for-ovarian-cancer

@SGO_org Practice statement: Frontline PARP inhibitor maintenance therapy in ovarian cancer: A Society of Gynecologic Oncology practice statement https://www.gynecologiconcology-online.net/article/S0090-8258(20)33747-1/fulltext

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