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

It is Gyn Cancer Awareness Month! What better time to chat about Gynecologic Cancer Advocacy than September. Christina and I are also excited to celebrate #gyncsm's 3rd Anniversary as a chat and a Twitter community. Over the past three years we hope #gyncsm has provided patients, survivors and caregivers of women impacted by gynecologic cancer a place to gain valuable information about gyn cancers, available treatments and emotional support. For the healthcare providers and researchers we have welcomed, we hope #gyncsm has provided insight into the experiences of those impacted by gynecologic cancer. We will wrap up this month's chat speaking with you - our #gyncsm community members - about our goals.

We hope you will join us as we delve into these topic questions:

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

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

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

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

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

In advocating for improvements in care?

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

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

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

Another exciting part of this month's chat will be the launch of our 2nd Community Survey.

This short 10-question survey will launch on the day of our chat, September 14, 2016 and will end on October 11, 2016. We hope to learn more about our members, your background, topics of interest to you, and what we can do to improve your experience and our #gyncsm community.

So be sure to join us on Wednesday, September 14, 2016 at 9pm ET (for your local time click here).

See you then,

Dee
Co-founder #gyncsm

New to tweetchats?

Tweetchat Basics

Twitter Basics

Tweetchat Etiquette

Topic Questions For Our November Chat

Wednesday's (November 12, 2014 at 9pm EST) #gyncsm chat topic will be "Complementary and Alternative Therapies".

Below are the questions that we will be asking during the chat. We will share helpful resources from the NCI, NIH and NCCAM as well as welcome Lynne Feldman, author of Integral Healing and Meg McQuarrie, founder of the  Elixir Fund to our chat. 

T1: Are you familiar with complimentary therapies? How do patients hear about? Which have you tried?

T2: Which complementary therapies from your viewpoint seem to be most helpful? Ones to avoid/delay under certain circumstances?

T3A: If you looked into or pursued alternative therapy, pls share your decision process, experience, outcomes.
T3B: What are the provider thoughts when it comes to alternative therapies?

T4: What guidelines/considerations can help patients explore options? Certain therapies providers would feel uncomfortable with? 

We look forward to you joining us.

Dee

Continuing Our Chats - More Than 140 Characters

Over the past year women have contacted us via e-mail or direct message for more information about topics we have discussed in our monthly chats. Many others have used the resources we provide on this blog site and let us know how useful they were in their situation. We also know that there are those who “listen in” to our chats but are not comfortable asking questions or responding in an open environment such as Twitter. So we’ve been thinking about how and where we might continue our chats in a private setting which will allow a larger than 140 character response. We have examined many wonderful online patient community platforms. Each platform has different goals, styles and functionality.

We believe we have found one that meets our identified needs and goals for providing a space to continue our monthly #gyncsm Twitter chat discussions. We are excited to share that we will be partnering with Roni Zeiger and Gilles Frydman, founders of Smart Patients, to bring our community to the Smart Patients platform.

Roni Zeiger and Gilles Frydman founders of Smart Patients. (Photo courtesy of Smart Patients.)

Smart Patients is an online community where patients and caregivers can learn about their disease, share questions about their conditions with other members who have the same diagnosis, find clinical trials, share information they know about their disease with others and use what they have learned. Both Christina and I have individually been participating in conversations on the Smart Patients site for some time now.

Membership in Smart Patients is free but is limited to patients (anyone living with or living beyond cancer or other chronic diseases) and caregivers. They have a policy (https://www.smartpatients.com/terms) to ensure that our conversations are private. You may register for an account by visiting https://www.smartpatients.com/gyncsm. By joining Smart Patients through that page, you will automatically be part of the gyncsm community and “tag” on Smart Patients but feel free to join other gyn cancer conversations by following other Smart Patients tags such as: ovarian cancer, vaginal cancer, vulvar cancer, cervical cancer, endometrial cancer, uterine cancer, and fallopian tube cancer.

Our tweet chat topic questions will be posted on Smart Patients just prior to our monthly chat and significant tweets that are posted during the chat will appear within each topic question conversation. Both Christina and I will moderate the conversations just as we moderate the #gyncsm tweet chat and hashtag.

We look forward to having patients, survivors, caregivers and loved ones join us on the Smart Patients site where you will be invited to continue the conversations we have during our chats and interact with others members of the Smart Patient site.

Dee Sparacio & Christina Lizaso

Co-founders #Gyncsm

Topic Questions for our Oct 8th Chat

Wednesday's ( October 8, 2014 at 9pm EST) #gyncsm chat topic will be "Recurrence- What Now?".

Here are the questions that we will be asking during the chat. You will see that some questions are addressed to health care providers and some are directed toward those dealing with a gyn cancer diagnosis and their caregivers. 

T1A: What are the signs of recurrence for the main GYN cancer types & how is recurrence confirmed? 

T1B: If you had a recurrence, what signs/ symptoms did you have? Please include in answer which gyn cancer you had.

T2A: How likely is a GYN cancer recurrence and where might the recurrence occur?

T2B: If you had a recurrence, where did your recurrence occur? Please share cancer type in your tweet.

T3A: What treatments might be offered for a recurrence? Different than first-line?

T3B: Survivors: What factors did U consider when choosing a treatment 4 recurrence? Did U consider #clinicaltrials? join trial?

T3C: From the provider perspective, what factors do you feel patients should consider? How do clinical trials fit in?

T4A: What tips & resources can help patients and families cope w/ the emotional impact of a recurrence? also the fear of recurrence?

T4B: If you had a recurrence, what did you find helpful? Survivors, what helps you cope with fear of recurrence?

We have some exciting news to share with all of you on Wednesday or check this blog on Monday for our announcement. 

See you Wednesday night!

Dee

Co-moderator