August #gyncsm Chat - "You never heard of Primary Peritoneal Cancer or GTDisease?"

In the past three years we have hosted chats dedicated to a number of the different gynecologic cancers - Cervical, Endometrial/Uterine, Fallopian Tube, Ovarian, Vulvar and Vaginal. This month we are going to discuss two more of the rare gynecologic cancers - primary peritoneal and GTD (Gestational trophoblastic disease).

What are these cancers?

Primary Peritoneal Cancer (PPC) forms in the peritoneum (the tissue that lines the abdominal wall and covers organs in the abdomen), and has not spread there from another part of the body. Primary peritoneal cancer sometimes spreads to the ovary. It is similar to ovarian epithelial cancer and is staged and treated the same way.
-NCI Definition

In data from 1995-2005, Goodman* found that the incidence rate in the U.S. for PPC was 6.78 per million women compared to 119 per million for ovarian cancer. Women with PPC were diagnosed at a later age (mean 67 years) than ovarian cancer (mean 63 years). (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706690/)

GTD (Gestational trophoblastic disease) is a rare condition in which abnormal cells grow inside the uterus from tissue that forms after conception (the joining of sperm and egg). This tissue is made of trophoblastic cells, which normally surround the fertilized egg in the uterus and help connect the fertilized egg to the wall of the uterus. These cells also form part of the placenta (the organ that passes nutrients from the mother to the fetus). Most GTDs are benign (not cancer) and do not spread, but some types are malignant (cancer) and spread to nearby tissues or other parts of the body. The two main types of GTDs are hydatidiform mole and choriocarcinoma. Also called gestational trophoblastic disease, gestational trophoblastic tumor, and GTT.
-NCI Definition

GTD occurs in 1 out of 1000 pregnancies in the US. It less than 1% of all gynecologic cancers. GTD is more common in Africa and Asia than in North America. (http://www.cancer.net/cancer-types/gestational-trophoblastic-disease/statistics)

You can learn more about GTD or Primary Peritoneal Cancer by joining our chat and reading these pages on the NCI website.

• GTD https://www.cancer.gov/types/gestational-trophoblastic/patient/gtd-treatment-pdq
• Primary Peritoneal Cancer is treated like ovarian cancer and is included with the NCI Ovarian cancer information. https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq

You can also read a GTD survivor story here on our blog:
http://gyncsm.blogspot.com/2015/04/survivors-story-gtd-and-me-story-of.html

Part of #gyncsm's mission is to support those impacted by all gynecologic cancers. One way we can do this is to offer information on rare gynecologic cancers and support survivors of those cancers. #gyncsm will be participating in the #Dazzle4Rare social media campaign during August 13-19. Check out that tag to learn more about rare disease and share your own story.

We hope you will join us as we raise awareness of the risks of these rare gynecologic cancers, support the women impacted by them, and support the clinicians and researchers who focus on treating these rare cancers.

We look forward to chatting with you on Wednesday, August 9th at 9pm EST (8pm CST/ 6pm PST).

Guiding our discussion will be the following topic questions:

T1: What is Primary Peritoneal Cancer (PPC)? Why is it treated like ovarian cancer?

T2: Are there risk factors and symptoms of Primary Peritoneal Cancer (PPC)? Is there a known genetic mutation that increases risk?

T3: What is Gestational trophoblastic disease (GTDisease)? What types of GTDisease are there? Are they all malignant?

T4: What are the risk factors and other important things to know for GTDisease? Is there a known genetic mutation that raises risk?

T5: Are there any special support services for these two rare cancers? Where can people learn more?

Dee
Co-founder #gyncsm

*Goodman Study

Sarcoma Awareness Month - Add your support

Guest post by patient advocate Suzie Siegel (@SuzieSiegel)

Many women never hear of sarcoma until they get it.

Sarcoma Awareness Month can teach women about rare gynecological cancers — then give them hope and resources to survive.

The National Cancer Institute, the American Society of Clinical Oncology, the American Association for Cancer Research and the American Cancer Society all recognize July as Sarcoma Awareness Month.

But the White House and Congress have never made it official. Once again, sarcoma nonprofits have a petition going, and we would love to have your help. 

Please add your name to the petition to officially designate July as 

Sarcoma Awareness Month: 

https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

Sarcoma is a cancer of muscle, bone and other connective tissues. It represents 20% of childhood cancer cases but only 1% in adults. It can arise anywhere in the body at any age, from newborns on up.

In women, sarcoma can occur anywhere in the reproductive tract although the uterus is the most common. The different types are:

1.     Carcinosarcoma (formerly known as malignant mixed mullerian tumor or MMMT). Sarcoma specialists often don’t consider this a true sarcoma.

2.     Leiomyosarcoma. The Cancer Genome Atlas is expected to separate gynecologic leiomyosarcoma from LMS found elsewhere in the body.

3.     Endometrial stromal sarcoma. It has been divided into low-grade, high-grade and undifferentiated uterine sarcoma.

4.     Adenosarcoma.

5.     Embryonal botryoides or rhabdomyosarcoma found in infants.

6.     PEComa.

Risk factors include previous pelvic radiation and use of Tamoxifen.

Women often are diagnosed first by an OB/GYN and may then be referred to a gynecologic oncologist. Many also choose to see a medical oncologist who specializes in sarcoma, too.

Sarcoma nonprofits can help women find specialists as well as financial and emotional help. Let us help you!

—————

I’m a 15-year survivor of metastatic leiomyosarcoma that started in my vagina and spread to my right lung. I volunteer for the Sarcoma Alliance, Sarcoma Foundation of America, Imerman Angels and MD Anderson Cancer Center’s MyCancerConnection. You can contact me at suziesiegel@tampabay.rr.com

Suzie Siegel is pictured here at SGO 2017 with Dr. Don Dizon
at her table for the Sarcoma Foundation of America

Our Community - 2016 Survey Results

During September and early October we conducted a #gyncsm community survey. We were so pleased that 84 individuals took our survey. This is up from 37 respondents who completed our 2014 #gyncsm survey. We very much appreciate those who took the time to share their ideas and recommendations. Below are some highlights of the results.
 
The majority of survey respondents were Gynecologic Cancer Patient / Survivors (70.0%) followed by High Risk Individual or Advocate / Previvor (12.5%), Health Care Provider (11.25%), Caregiver / Loved One of a gynecologic cancer patient / survivor (10%) and lastly Cancer Researcher (5%).

The patient / survivor breakdown was:

• 46.8% ovarian
• 34.3% endometrial/uterine
• 14.0% cervical
• 8% fallopian, primary peritoneal, vulvar or GTD
• 0% vaginal
• 7.8% breast

Of the health care professionals who filled out the survey, the majority were nurses (42.8%) or gynecologic oncologists (28.5%). The remaining health care professionals were medical oncologists, radiation oncologists, researchers or genetic counselors.
 
We were interested in how followers interacted with the #gyncsm hashtag, chats and community. 43% of the respondents read the chat blog posts, 43% retweeted using the hashtag, 36% took part in a chat, 38% tweeted using #gyncsm, and 27% read a chat transcript. Less than 10% of the respondents joined us on Smart Patients platform. When asked specifically about our blog site, we found that 50% of the respondents visited our blog.

We asked which of the topics covered over the past three years were most important and these were the top five topics for survey respondents:

1. Survivorship
2. Advocacy
3. Side Effects
4. Personalized Medicine
5. Clinical Trials and Support

When asked how they used the information from #gyncsm chats after the chat, the top response was advocating for themselves or others (58%). Also of note, 29% took part in an online support group and used a resource found in our blog posts. 

 
When we asked how we can better help the community and what topics we should discuss, here's some of what we learned:

• Sometimes the time is either too early or too late.
• Sometimes the chat is too quick for a meaningful discussion.
• We should highlight other gyn cancers - endometrial/uterine, cervical were mentioned in particular. Continue to talk about clinical trials and genetics.
• Talk about health care disparities and outcomes for women of color.
• Talk about dealing with grief from the loss of friends.
• Talk about sexuality after treatment.
• Talk about what is important to younger patients.

We also asked respondents to share their thoughts on our #gyncsm chat/community and how it has has impacted their attitude toward their own health. Some of the things we heard are that #gyncsm provided:

• Hope.
• Made me feel part of the community.
• Encouraged me to take more ownership in my own preventive health and advocacy for others.
• Appreciate the range of resources offered.
• Feel more empowered, less alone.
• Led me to follow up more on some of my side effects and secondary challenges.
• Wish #gyncsm could be leveraged into a new non-profit for all GYN cancers.
• I felt like I was alone... there were no support groups near me. #gyncsm made me feel a part of a community.

But we also heard:

• It is challenging for the hashtag to cover both advocacy/activism AND patient/survivor support - this is a common problem with other disease hashtags.
• There needs to be more equal support for other cancers.

Lastly we wanted to know how individuals find out about #gyncsm. Respondents found us via:

• Twitter
• Other cancer chats
• Facebook
• Dee's Blog
• From a friend
• Researching cancer
• Followed @btrfly12
• NED twitter handle
• Randomly found the #gyncsm chat
• Smart Patients

Thank you to all who took this survey and for your continued support. We are using the information from the survey as we make our plans for next year. Remember if you have any other comments or concerns feel free to reach out to gyncsm@gmail.com.

Dee
#gyncsm Co-founder

September 14, 2016 Chat - Gynecologic Cancer Advocacy & #gyncsm Community Goals

Today we celebrated our third anniversary as a chat and Twitter cancer community.

We want to take this opportunity to thank this year's health care moderators, Dr. Rick Boulay, Dr. Shannon Westin, Dr. Merry Markham and Dr. Anne Becker-Schutte. We also want to thank one of our founding health care moderators, Dr. Don S Dizon and Dr. Matthew Katz who wrote our Tweet Disclaimer. And to all the organizations and individuals who supported us by sharing our tweets and information about our chat, thank you.

Since September is Gynecologic Cancer Awareness month it was fitting that our chat topic was Gynecologic Cancer Advocacy and #gyncsm goals. We had 34 participants join us for our chat and had over 1.5 million impressions. Additional analytics may be found here.

The questions we used to guide our discussion appear below with some sample responses. Please see our transcript here for the complete responses and the names of additional advocacy organizations.

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

• Using social media as a way of promoting awareness. Advising women to journal their symptoms.
• Still working on speaking up for myself when I'm in the doctor's office. A work in progress. I do fine speaking up re: my kids
• Have learned importance of going into appts prepared as much as possible.  

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

• Picking up new words quickly. If in person, asking what they mean, how they are spelled, etc., helps me learn.
• If possible, bring a buddy. A second set of ears, voice for clarification, note-taker, etc can make a huge difference
• Society for Participatory Medicine @s4pm is a great group. Talking w/ other patients. @intakeme has ePatient101 online course 
• @power4patients another good resource. @smart_patients community and other communities

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

• @Sgo_org @GYNCancer @OCRF
• NOCC of course
• Advocacy organizations are vital to raising awareness @GYNCancer [correct tag @NOCC_national] @OCRFA @CancerSupportCm @gyncsm 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

• wearing my teal ribbon bracelet all month and starting conversations, wearing teal on tuesdays, RTs and posts on my personal FB
• Just gave a lecture to our ovarian cancer survivor group, keeping teal on whenever possible, bringing up gyn cancer on twitter!
• Just completed a documentary with PBS "Close to Home: cancer survivorship" airs next week on PBS 39. 

T3: For gynecologic cancers, what are the barriers in raising awareness? 

In advocating for improvements in care?

• All rare diseases are tough to shine the light on
• Women can be afraid to discuss gynecologic cancers - it can be an uncomfortable topic - they feel alone 
• Still see a lot of taboo with gyn cancers. Also, many women are not educated about their own bodies. That is the starting point.
• advocates of less prevalent cancers can definitely gain by working together to amplify their voices - collaborating where can

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

• Huge patient advocate presence on social media - easier for patients to interact with each other and share knowledge
• There has been a strong increase in advocacy efforts through resources and education from partners like @GYNCancer [correct tag @NOCC_national] @OCRFA
• The cancer moonshot can only help. The PBS documentary on cancer last year helped too.
• Progress with the Immuno-oncology drugs and other biologicals. Slow but steady improvement

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

• Something I wonder about is uterine/endometrial cancer... why no large national organization when more cases than cervical, ovarian
• Encouraging clinical trial participation
• survivorship planning, end of life too
• patient reported outcomes, quality of life, survivorship

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

• I'd love to find more participants.
• I'd love to see a .gov or neutral supported site with patient communities listed dr's could feel comfortable referring patients too. 

During tonight's chat we launched our 2016 #gyncsm Community Survey. All followers and chat participants are invited to answer the short 10 question survey which is located at www.surveymonkey.com/r/STHG6RC .
We will collect responses from today until October 11, 2016.

We hope you will join us on Wednesday , October 12th at 9pmET for our chat Warrior? Fighter? The words we use... .

Remember you can always continue this conversation on Smart Patients at https://www.smartpatients.com/gyncsm .

Dee
Co-founder #gyncsm 

We Asked & You Answered

Thank you to everyone who completed our survey. Thirty-seven people from survivors to researchers to gynecologic oncologists completed the survey. Please note, you could skip questions so not all questions were answered by all 37 people.

The number of respondents who were patients or survivors was 54% which is similar to the percentage of patients / survivors who participate in the monthly chat. We also heard from caregivers (2.7%) , and advocates ( 10%) . Twenty-four percent of the respondents were healthcare providers and five percent were cancer researchers. We did have a few individuals who were survivors / caregivers of other cancers who also took the survey.

Of the patients / survivors who took part in the survey, a majority of them had been diagnosed with ovarian cancer while we had three cervical cancer patients and three endometrial cancer patients complete the survey.

Health care providers who filled out the survey were predominantly gynecologic oncologists, radiation oncologists, and nurses but we also had one peer-to-peer support person and a health reporter participate.

When we asked you why you took part in the chat, we learned that many of you joined us to learn and because the topics were interesting. You also joined us to meet other community members, to provide support and to share advice. A number of the respondents joined us to share knowledge to improve the quality of care of women diagnosed with these diseases.

We asked you which topics (Sept 2013 -2014) you found most important. Based on the average rating the top 5 topics were:

• Advocating for Yourself and Others
• Ovarian Cancer Awareness
• Clinical Trials
• Fertility and Sexuality
• Caregiver Family issues

Then we provided a list of topics for 2015 and asked you which ones you felt were most important. The top 5 topics are:

• Dealing With Long and Short Term Side Effects
• Personalized Medicine
• Dealing with a Recurrence
• Dealing with Anxiety
• What I wish I knew Before Treatment

In the next question we provided some areas in which you could use what you learned in the chat. Many people used or shared the resources mentioned in the chat or on our blog, advocated for yourself and others, and made changes in your personal or professional practice.

When we asked you how we could improve the community, you told us to

promote our blog more and to increase how many patients participate in the chat. One person suggested we reach out to cancer centers to post about the chat. You also asked for the questions in advanced so you could be bettered prepared. We started doing that for the October chat and will continue to do so.

We asked you how often you participated in our chat. Ten of you had not participated in the chat at all. Seventeen respondents took part 1-5 times and 6 took part between 6 and 13 times.

We saw similar results when we asked you how frequently you visited our blog, with eight people having never visited the blog. Fourteen visited from 1-6 times. And five people reported that they visited the blog 10+ times.

Some other important things shared:

You were happy that your non-professional voice was heard.

You asked to have a spot in a blog to share your blogs. (We do have links to resources and the major gyn cancer organizations on our blog. )

Some were a bit uncomfortable in the company of physicians. (We hope our new partnership with Smart Patients will allow you to feel better connecting with your peers. Be sure to register at https://www.smartpatients.com/gyncsm to continue discussing our chat topics.)

We also heard from one person that we provided “fuzzy” information. We apologize if we are not communicating in the best way for you to understand the information. Please contact us via e-mail ( gyncsm@gmail.com ) with any issues you may have.

We appreciate the feedback you have provided and will use it to plan our 2015 chat topic list and as a guide as we grow our community.

Thank you!

Christina Lizaso

Dee Sparacio

#gyncsm Co-moderators 

Looking back at a year of #gyncsm chat Today I Learned's

At the end of each #gyncsm chat, we call on participants to share closing thoughts using TIL, standing for "Today I Learned".  I really enjoyed looking back through them all and below are a selection of my favorites from this past year of monthly chats.

Want more? You can find the running list of TILs from each chat HERE.

TIL: A new way to connect and share with a community of people living with, advocating for and caring for GYN cancers! awesome! @eberrygynonc

TIL: connections in person or online can impact and empower. @joannerash

TIL: again how important it is to ask questions and be your own health advocate. @staunchstudio

TIL: We all have so much to share w/ each other and each conversation helps us all connect better @gyncsm   

Proud of the amazing conversation at #gyncsm tonight. We need to spread GOOD info on gyno cancers. #LetsDoThis. @girlmeetsgeek

that cancer is an umbrella of diseases under which we can all stand TOGETHER and support all! @chemobrainfog

TIL that there’s a website for EVERYTHING! And that I’m not alone in my clinical trials frustrations. @cookifit

TIL (again): There are so many very powerful voices working to decrease stigma and connect those in need of support. @drbeckerschutte

#gyncsm chat is a lifesaver. Its amazing to get opportunities to talk with fellow survivors & professionals freely. Thank you for this! @cookifit

TIL that there are fierce advocates for those with #cervca and that there is HOPE. @brownbeansprout

TIL how much I love the #gyncsm chats and the people it brings together. @cloudhealth

TIL: different viewpoints on clinical trials. Good to see things from a different perspective. Thanks everyone at #gyncsm! @eberrygynonc

TIL that we can learn from each other No need to re-create the wheel! BTW I used TIL as closure when I was teaching 5th grade @myelomateacher

TIL: caregiving + family issues can be as complex as the clinical issues. It's a team effort @rzeiger

Brilliant TIL: impt that clinicians recognize cancer is social dz. Stop, ask how the loved ones are doing. @gfry

cancer is hard for everyone. Patient, caregiver.Partner & children. No right or wrong. Just be a loving unit is my final thought @brcainfo

TIL: Reminded there is power in knowing you are not alone in whatever you are facing and that others are there for you. @btrfly12      

TIL continual imptce of being ur own advocate:key to survival and NEGU (never ever giving up) @jtriestm

TIL GYNCSM is a diverse body with many different and wonderful suggestions to approach the same issue. @journeycancer        

TIL that despite all SHE's facing, my wife still has love and patience when I'M upset, and maybe I should be more OK with showing it @simpson1290

TIL so happy I was able to participate tonight, you all are amazing and I'm so grateful to have this forum, take care :) @rose_mzrozee

TIL: too many to list...great advice/sharing from great people! #endcancer @natedahlpharmd

TIL - we have a huge opportunity to educate our gyn ca providers to address sexuality and fertility issues early and often @shannonwestin

Cancer needs a multi-dimensional approach with a muti-disciplinary team covering multiple issues. A challenge but can be overcome! @giasison

TIL once again, patients need to be their own health advocates. Never assume. Ask questions. Explore all options @jbbc        

"For the secret of the care of the patient is in caring for the patient." Francis Peabody <-- the whole patient @subatomicdoc    

Til - there are wonderful hcp and patients exchanging ideas and touching on topics that rarely get discussed #gyncsm thanks everyone @natricer

appreciate greatly everyone sharing an hr to educate, inform & support those with cancer. & related issues - so thrilled to peek in! @natricer

TIL important for patients and providers alike to use coping mechanisms and ask for help @shannonwestin

TIL I'm not alone in my fear of recurrence. Knowledge is power. Staying connected even after treatment is important. @intakeme

TIL: Integrated whole person care is essential in all disease communities. @drbeckerschutte

TIL: being an advocate is important. Everyone can do something & make a difference in another persons life. I will never stop doing! @brcainfo

TIL Those on #gyncsm can change the status quo. #communities are more important than ribbons... or ice buckets. @drdonsdizon      

TIL: There are so many ways to advocate for yourself and others - don't be afraid to ask questions and find the right MD for you @shannonwestin

This year I learned: people in the gyn cancer community could find each other and come together to support and educate each other @womenofteal

TIL: The best learnings come from sharings of what each & every one of us go through. And for that I'm forever grateful. @giasison

TIL: @gyncsm has been a great resource for gynecologic cancer advocacy for a solid year. Happy anniversary! @drmarkham            

Thanks for the great chat everyone! A very happy anniversary #gyncsm! Together, we can make a difference. @globeathon  

I'm excited for another year of sharing and learning with #gyncsm.

Christina Lizaso

Help Us Plan- The Gyncsm Survey

Last month Christina and I had a Google Hangout. I live in NJ and she lives in Texas. So for the past year we have been communicating strictly via e-mail.  This was the first time we talked face to face since we founded the #gyncsm chat.

We talked about celebrating the community's one year anniversary and what we could do to enhance the community experience ( more about that in October). We also discussed who participates in the monthly chat and how to increase the number of  @gyncsm followers who participate in the chat. As we began generating a list of topics to cover during our  2015 #gyncsm chats we realized that we should ask our participants what topics were important to them in 2014, what topics they liked best from 2014 and how they used the information they learned by taking part in our chats.

So over the next few weeks we developed the questions and asked our health care moderators for their input regarding which questions to use in the final 10 question survey.

During our September 10th chat Christina tweeted an invitation to fill out the survey. Twenty-two people to date have completed the survey. Thank You!

If you haven't completed the survey, please take the time today to go to the link below

https://www.surveymonkey.com/s/5QNDJ7K 

and answer the questions. The survey is open to all- healthcare providers, caregivers, patients, survivors, researchers.  We are listening and your input is valuable to us as we plan future chats. Thanks again.


See you on October 8th ( 9pm EST) for our chat on Recurrence.

Dee
Co-moderator.