Showing posts with label #gyncsm chat. Show all posts
Showing posts with label #gyncsm chat. Show all posts

Tuesday, December 10, 2024

Eleven Years of Supporting and Educating the Gynecologic Cancer Community

In 2013, Christina Lizaso and I founded the #gyncsm chat and community on Twitter/ X. This year, eleven years later, we made the difficult decision to cease hosting the #gyncsm chat. You can read more about our decision on the #gyncsm blog.  Our last chat will be Wednesday, December 11, 2024 at 8pm ET with special guest and long time #gyncsm chat supporter, Cervivor. 

 We have done so much - in addition to changing our logo through the years.


We held a total of 108 chats (including this December chat).  We covered many topics including risk factors, caregiving, parenting, working while being a cancer patient, personalized medicine, treatment side effects, how to work and communicate with your health care team and survivorship.  These chats were possible because of the many individuals, organizations and groups that supported us. 

We had support from gynecologic oncologists who volunteered their time to be our  health care moderators and others who joined the chat as guests sharing their expertise. We had researchers join us to talk about their research and new treatments available to women diagnosed with gynecologic cancers. We chatted multiple times about every gynecologic cancer including the more rare types such as vulvar, sarcomas, GTD and primary peritoneal cancer. We held two digital health fairs and invited cancer support organizations to share the resources they provide to cancer patients and their caregivers. We've talked to cancer health equity experts about how to best provide cancer health care to all women. We've had chats focused on the emotional impact of a cancer diagnosis, fear of recurrence and how to talk to your children and family about your diagnosis. We've talked with genetics counselors about hereditary cancers, genetic testing and mutations. We raised awareness of pelvic health, pre-habilitation and nurse navigators. We discussed types of advocacy from research advocacy to advocating for yourself or your loved one. We talked frequently about clinical trials from the types of trials to how to search for and enroll in a trial. Annually, we shared the latest research news from the ASCO and SGO annual meetings. And we can't forget about the insights gynecologic cancer patients provided to each other and to researchers during our chats.

Personally, I have been blessed to be part of the  #gyncsm chat. I am so grateful to have worked with Christina these past 11 years to bring support and education to the gyn cancer community. Working on the chat and sharing information has opened doors for me to expand my advocacy work. I not only meet some of the top gynecologic cancer researchers in the world but have had the opportunity to work with them. I've co-authored a book, presented at oncology meetings, and worked on SGO, ASCO and NCI committees. I also have had the opportunity to be a patient advocate on a number of clinical trials. And  I learned from the gyn cancer patients and caregivers in our community- what a courageous and motivated group. I am sad to see the chat end but so appreciate the opportunities provided to me by the chat. 

I will continue to share research information on X using the #gyncsm hashtag and our blog will remain active so that members can have access to the resources and chat transcripts. 

You can find me here and as womenofteal on X, , Facebook, Instagram, Threads and Bluesky. 

 

Dee

Every Day is a Blessing


Friday, September 15, 2023

Ten Years as a Community and Chat

On Wednesday, September 13th the #gyncsm Community celebrated it's Tenth Anniversary as a community and Chat.

It seems like yesterday when after taking part in a #bcsm chat on Recurrence I posted this to Twitter.  

 

Shortly after, Christina, a ovarian cancer advocate in Texas and I, an ovarian cancer survivor in New Jersey joined together to establish an online community. At first we were going to concentrate on ovarian cancer only but decided that our community should be open to all women diagnosed with gynecologic cancers. So the #gyncsm ( gyn cancer social media) community was born. 

We wanted to insure that the information and support we provided was accurate. We reached out to gynecologic oncologists,Dr D Dizon, Dr R Boulay, and Dr MJ Markham who agreed to be our first  Health Care Moderators. Knowing that we might chat about mental health issues or that some topics might cause emotional distress, we invited psychologist, Ann Becker-Schutte, Ph.D. to join us. As their practices and professional activities increased for our original HC Moderators, we were happy to have Sarah M. Temkin, MD and Shannon Westin, MD, MPH take the place of our original moderators. From the very first chat we have had the support of Cervivor, SGO and Dr Matthew Katz, who helped us draft our Tweet Disclaimer.

Our community has chatted about the risks and treatments of all the gyn cancer types from the most common to the most rare. We discussed advocacy, parenting with cancer, working while having cancer, the role of the caregiver, communicating with your health care team, genetics, personalized medicine, survivorship, clinical trials and many chats on emotional health. We've had guests present on health equity, how to find a clinical trial, how to become a research advocate and so many more. Since 2014, we have highlighted research results presented at the ASCO and SGO annual meetings. And yes, we also spoke about recurrence, the topic that sparked Christina's and my initial Twitter exchange.

Our logo as well as this blog has evolved over the years with our latest version being launched at our 100th Chat in March 2023. 


 

 

Through the years our community has been involved in a number of research efforts. We have been  co-authors on several published research articles covering the needs of women diagnosed with ovarian cancer, caregiver support services, patient needs when considering a PARP inhibitor as well as a number of papers on social media, hashtags and cancer communities.  You may find links to the article on our blog's Publications page.

If you have been a part of the #gyncsm community at any point through the years we would love our feedback by answering these questions:

Question 1 : Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats?

Feel free to respond in the comment box below or on Twitter https://twitter.com/gyncsm/status/1702737477868417061

It has truly been a wonderful experience working with Christina and all our gyn oncs and supporters. This community has allowed my work as an advocate to grow far greater than I ever imagined. Thanks everyone. 

Dee

Every Day is a Blessing!