by Dee Sparacio
“I wish I could start a group like this for Ovarian Cancer survivors. #BCSM” @womenofteal
“@womenofteal maybe we should try. I know one gyn onc on twitter who might help #bcsm” @btrfly12
It was late 2012 when I had that initial tweet exchange with Christina Lizaso, (@btrfly12), an ovarian cancer advocate. I had been warmly welcomed to the #bcsm chat community by the moderators but still felt the need to interact with other gynecologic cancer survivors.
It took until July of 2013 when I read “Hashtag Folksonomy for Cancer Communities on Twitter” in the ASCO Connection for the idea to really take off. I tweeted to Matthew Katz, MD (@subatomicdoc) how I wished there was a chat for ovarian cancer survivors like the #BCSM (Breast Cancer Social Media) chat. Christina Lizaso ( @btrfly12), reached out again and before we knew it a number of physicians as well as the Society of Gynecologic Oncologists tweeted back and forth generously sharing their expertise and support in establishing an online Twitter community for those impacted by gynecologic cancers.
Christina set-up a Twitter account (@gyncsm) and we began using the hashtag #gyncsm for tweets that were of interest to those in our community. I created the #gyncsm blog (http://gyncsm.blogspot.com/) to have a central location for information related to the gynecologic cancer chat. Both Christina and I agreed to be Advocate Moderators. Dr. Katz wrote our Tweet Disclaimer. Rick Boulay, MD (@journeycancer), Don Dizon, MD (@drdonsdizon) and MJ Markham, MD (@DrMarkham ) agreed to be our Health Care Advisors/ Moderators. While Dr. Ann Becker-Schutte (@DrBeckerSchutte) agreed to join us when we discussed mental health issues. The Society of Gynecologic Oncology (@SGO_org) and Tamika Felder (@iamacervivor) offered their support. We discussed the best night to schedule the chat topics and which topics we should discuss via email. We agreed to hold the chat on the second Wednesday of the month at 9 p.m. EST.
With Ovarian Cancer Awareness Month in September we decided that our inaugural chat would be held on Sept. 11 at 9 p.m. EST. A lively discussion among the physicians, ovarian and cervical cancer advocates, caregivers, cancer centers, organizations and others took place. It took time and effort by so many to establish this chat and online community but we were on our way.
From that initial chat to the next September, #gyncsm discussed a variety of topics relevant to the gynecologic cancer community. During the hour-long online discussion we asked four to five questions on each month’s topic. At the conclusion of each chat, we posted the questions, a chat transcript and links to the resources mentioned during the chat on our blog (gyncm.blogspot.com). In a survey we ran in September 2014 we found that our top chat topics were:
- Advocating for Yourself and Others
- Ovarian Cancer Awareness
- Clinical Trials
- Fertility and Sexuality
- Caregiver Family Issues
In October 2014 we began a partnership with Smart Patients, an online community where patients and caregivers can learn about their disease, ask questions, and share information and experiences. This partnership allows survivors and caregivers to join us in a private setting and use more than 140 characters to discuss our topics.
During 2015 we reached out to a number of guests to share their expertise on topics of interest to our community. We discussed nutrition and exercise with the LiveSTRONG Foundation (@livestrong) and Dana Farber Cancer Center, @DanaFarber ; personalized medicine with Dr. Scott Richard (@sdr2md), Director of the Division of Gynecologic Oncology at Hahnemann University Hospital, and the Helomics™ Corporation (@HelomicsCancer); we spoke about helping people thrive after a cancer diagnosis with Reimagine (@Reimagine_ME @sophiakercher @5thstepofcancer) and we hosted a joint chat with the #hpm community on Palliative care with Dr. Christian Sinclair (@ctsinclair) a palliative and hospice medical care physician. We also welcomed Dr Shannon Westin (@ShannonWestin) to our group of healthcare moderators.
We have certainly grown over the past 2+ years. In 2015 we averaged 46 participants with a high of 88 participants for our Nutrition and Exercise chat. During a majority of chats we reached over 1 million impressions and reached over 10 million impressions during our November and December chats.
We end each chat with a Today I Learned (TIL). Two of our favorites are:
gyncsm chat is a lifesaver. It’s amazing to get opportunities to talk with fellow survivors & professionals freely. Thank you for this! @cookifit
TIL ( but really knew already) GYNCSM is a great group committed to advocacy and education for women’s cancer survivors @journeycancer
There was a need to support women with gynecologic cancers on Twitter and I am happy that the #gyncsm community is helping to fill that need. Other robust Twitter communities for cancer survivors, caregivers and healthcare providers have formed. They include lung cancer (#lcsm), brain tumor(#btsm), multiple myeloma (#mmsm), pancreatic cancer (#pancsm) as well as a community for adolescent and young adult cancer survivors (#ayacsm). You can search for additional cancer communities and healthcare hashtags can be found on the Symplur site (http://www.symplur.com/healthcare-hashtags/) .
We look forward to welcoming more survivors, caregivers, researchers and health care providers to our community in 2016.
Dorinda (Dee) Sparacio worked as an engineer and teacher prior to being diagnosed with Stage 3 ovarian cancer (OC) in 2005. Encouraged by her gynecologic oncologist, she attended the LiveSTRONG Survivor’s Summit and launched her vocation as an OC advocate. She shares her story and information about OC and cancer research on Twitter as well as on her blog, Women Of Teal. Since completing treatment for a recurrence she has attended two ASCO Annual Meetings and took part in the Stanford MedX IDEO challenge as an e-patient scholar. In 2013, she co-founded the #gyncsm community for those whose lives have been impacted by a gynecologic cancer. This year, she co-authored 100 Questions and Answers about Ovarian Cancer with Dr. Don S. Dizon. “My efforts to raise awareness and increase the funding of ovarian cancer research are dedicated to the women whose lives have been taken by ovarian cancer.”