#gyncsm Community: anniversary

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Friday, September 9, 2016

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

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Friday, September 4, 2015

Our 2nd Anniversary Chat 9/9/15 : GCAM and a Spotlight on Uterine Cancer

Christina and I want to thank our health care moderators, supporters and chat participants for being a part of the #gyncsm community. This month marks our Second Anniversary and we would not be an active vibrant community without your help and support.

This month we will be talking about Gynecologic Cancer Awareness Month and will also chat about uterine (endometrial) cancer. We are pleased to be joined by Lynne Braden (see her story here on our blog), uterine (endometrial) cancer survivor and founder of GynCAN (Gynecological Cancer Awareness Network). We are also pleased to be joined by Carrie Oliveira, uterine (endometrial) survivor and founder of The Iris Foundation.

The questions guiding our chat include:

T1: Let’s start with Gyn Cancer Awareness Month #GCAM. What do you wish others knew about your gyn cancer? What are some key points?

T2: Share ways you are raising awareness during #GCAM, everything small to big. Let's replicate great ideas and amplify the message!

T3: What are the #uterinecancer #endometrialcancer risks and symptoms? Survivors, what symptoms did you experience? How diagnosed?

T4: What treatments are used for #uterinecancer #endometrialcancer? Which side effects have the biggest impact?

T5: Why do you advocate for yourself and others? How has your life changed because of a gyn cancer diagnosis?

For more information about uterine (endometrial) cancer, please view this video by the Foundation for Women's Cancer.

We hope you can join us on September 9, 2015 at 9pm EST.

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Dee
Co-Founder / Co-Moderator #gyncsm

Sunday, September 28, 2014

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

Thursday, September 11, 2014

1st Anniversary Chat- Advocacy for Yourself and Others

September is the one year anniversary of the #gyncsm chat. Before providing the information about this month's chat, Christina and I would like to thank:

Our health care moderators: Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry J. Markham and Dr. Ann Becker-Shutte for their support, participation and guidance.
Dr. Matthew Katz for helping us write our Tweet Disclaimer, for responding to those first "Wish we had a community for gyn cancer survivors like #bcsm" tweets, and for continued input and guidance.
The #bcsm community for allowing us to model your community and join in your conversations.
The Society of Gynecologic Oncologists for supporting this chat and spreading the word about our online community.
OCNA for welcoming us as a Partner Member and sharing our tweets.
The gynecologic cancer survivors who have participated in our chats for sharing your experiences and supporting others diagnosed with your disease.
The health care providers, cancer researchers and organizations who join us from near and far. Your insight is invaluable and your interest in your patients physical and emotional well-being should be mimicked by providers and researchers and organizations everywhere.

Without all of you the #gyncsm community would not have grown from two women interested in advocating for gyn cancer survivors to a vibrant strong community.

In an effort to get your feedback and suggestions we ask you to fill out the #gyncsm survey which can be found at https://www.surveymonkey.com/s/5QNDJ7K

This month's chat was about Advocating for Yourself and Others. We were joined by Globeathon (@globeathon) and ovarian cancer advocate Gwen Harding-Peets (@greenP11). We had 56 participants, 691 tweets in the hour and over 1.5M impressions. The full transcript is available here.

The topics covered were:
T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

T2: What skills & tools do you need to be an effective advocate for yourself or your loved ones in the healthcare system?

T3: What issues in the GYN cancer community do you think we need to draw attention to?

T4A: How can GYN cancer groups, especially #gyncsm & @globeathon, help you better advocate for yourself and others about GYN cancers?
T4B: What are the hurdles & barriers in in advocating for yourself and others & in raising GYN cancer awareness?

T5A: Pls share local/national/global patient advocacy groups you work w/ – include twitter name and/or website & location if you can
T5B: Also share - How are you raising awareness about GYN cancers during this awareness month/year-round?

Next month's chat is on Recurrences and will be held on October 8, 2014 at 9pm EST.

We hope you can fill out our survey.

Resources:

Cancer Support Community – Open to Options Program http://www.cancersupportcommunity.org/MainMenu/About-Cancer/Treatment/Making-a-Treatment-Decision/Open-to-Options-2/Open-to-Options.html

Starbryge Health Online
http://starbrydge.com/

@Globeathon brings together people from around the world to #endwomenscancer
http://www.globeathon.com/
http://globeathon.com/partners/
http://globeathon.com/pledge/

@NEDmovie trailer
http://www.youtube.com/watch?v=Hlg_hKMUmJg&feature=youtu.be

Google Alert for #ovariancancer

@teaminspire chat boards
https://www.inspire.com/groups/cancer

SHARE national helpline: 866-537-4273 @SHAREing
http://www.sharecancersupport.org/share-new/

Support Connection
http://supportconnection.org/

@OCNA Advocacy at Home, Advocate Leader program & Research Advocate program
http://www.ovariancancer.org/what-we-do/grassroots/

Peach Outreach - great advocacy group for endometrial cancer
http://peachoutreach.com/

@OCRF Woman to Woman Program
http://womantowoman.ocrf.org/

Survivors Teaching Students Program from @OCNA
http://www.ovariancancer.org/get-involved/survivors-teaching-students-sts/
http://www.jrn.com/kgun9/news/Ovarian-Cancer-survivors-enter-the-classroom-to-share-stories-with-UA-med-students-274039881.html

Foundation for Women's Cancer - Information, Toolkits, Campaigns
http://www.foundationforwomenscancer.org/
http://www.foundationforwomenscancer.org/wp-content/uploads/GCAM-Toolkit-2014.pdf
https://www.facebook.com/media/set/?set=a.825730620800713.1073741832.190565747650540&type=1

Government Sites
http://healthfinder.gov/
http://www.nlm.nih.gov/medlineplus/

#raredisease patient toolkits from @GlobalGenes
http://globalgenes.org/toolkits