Looking for a #_CancerSocialMedia Chat?

If you are a reader of this blog you know that the #gyncsm (Gynecologic Cancer Social Media) community holds a regular Tweet chat on 2nd Wednesdays at 9pm Eastern Time. Did you know that there are other Twitter chats and communities for those impacted by cancer? As we begin the New Year, we wanted to take a moment and share with you a number of regular #_csm chats that may be helpful to you, a friend or loved one.

#bcsm breast cancer social media  Handle: @BCSMChat

Chats: Weekly on Monday 9pm Eastern Time

This long running chat started on 7/4/2011 by Jody Schroger and Alicia Staley. BCSM's mission is dedicated to empowering those affected by breast cancer through programs that provide evidence-based information in a supportive and compassionate manner. Moderated by @stales and @DrAttai

https://bcsm.org/

#lcsm lung cancer social media  Handle: @lcsmchat

Chat: 2nd Thursdays at 8pm Eastern Time 

The first chat was held on July 25, 2013. The focus of LCSM is to use social media in an innovative manner to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide. Moderated by Dr. H. Jack West @JackWestMD and Janet Freeman-Daily @JFreemanDaily

https://lcsmchat.com/

#btsm brain tumor social media  Handle: @BTSMchat

Chat: First Sunday each month at 9pm Eastern Time

The chat was inspired by the #bcsm chat and was founded in February 2012. Information on how to participate in the chat may be found at https://thelizarmy.com/2013/05/how-to-participate-in-the-btsm-tweet-chat/  Moderated by @cblotner_ @thelizarmy @adamhayden

#MMSM Multiple Myeloma Social Media Chat
Chat: Wednesdays 3-4pm Central Time
Find out more information by following #MMSM on Facebook
https://www.facebook.com/MultipleMyelomaMMSMTweetChat/

#PANCChat Pancreatic Cancer Tweet Chat 

Chat: Last Tuesday of each month at 8pm Eastern Time

Founded in April 2016, the chat was developed to provide relevant, credible, and timely information to the PC community. Read more in the journal article http://ascopubs.org/doi/abs/10.1200/JCO.2018.36.4_suppl.242

Co-hosts: @PanCAN, @DrAllysonOcean and guest experts

#ayacsm Adolescent and Young Adult Cancer Chat 

Chat: First Tuesday of the month at 8pm ET
Chats are attended by advocates, health care providers and survivors and offer topics of interest to adolescents and young adults.
Host: @EK_Drake

Symplur lists cancer-related hashtags on their Cancer Tag Ontology page (https://www.symplur.com/healthcare-hashtags/ontology/cancer/)

Other chats that may be of interest to our followers include:

#hpm chat Hospice and Palliative Medicine Chat @hpmchat
Chat: Every Wednesday at 6pm PT/9pm ET.
Moderators @ctsinclair, @rfberry, @EOLnavigator, @GraniteDoc or @acderinger
To be notified of chats please visit - http://www.hpmchat.org/

#HCLDR Health Care Leader Chat @hcldr
Chat: every Tuesday at 8:30pm ET (GMT-5)
A community ( patients, health care providers, caregivers, IT, policy makers etc)  of people who share a passion for improving healthcare.
More information may be found at https://hcldr.wordpress.com/
Founded in 2012. Moderators  @colin_hung and @JoeBabaian

#CureConnect Chat
Chat: Monthly
Hosted by CURE Magazine

#WegoHealthChat 
Chat: Periodic
Hosted by WEGO Health to bring patient leaders together to discuss issues that are important to their various communities.
https://www.wegohealth.com/2017/04/11/10-tips-for-participating-twitter-chat/

#PatientChat Empowered Patient Chat

Chat: Bi-weekly on Fridays 1pm ET

Hosted by Patient Empowerment Network

https://powerfulpatients.org/resources/empowered-patient-chat/

#PatientsHavePower Chat
Chat: Periodic
Hosted by Clara Health/Breakthrough Crew

#WTFix Chat
Chat: Periodic
Hosted by HealthSparq


If you moderate a chat for those impacted by cancer, please let us know and we will add you to this list.

Happy New Year! 

The Clare Project -What matters most to young adults with cancer as they make choices about fertility preservation?

In the past the #gyncsm community has held chats about fertility and life as a young adult following a gynecologic cancer diagnosis. Recently we learned about the Kaiser Permanente Washington Health Research Institute's Clare Project. The Project is a research study to understand how adolescent and young adults with advanced cancer make medical decisions. 
This blog post first appeared in Medium. 

What matters most to young adults with cancer as they make choices about fertility preservation?

In 2016, we launched The Clare Project to understand how adolescent and young adult (AYA) patients with advanced cancer make medical decisions. Our study is a memorial to a family member, Karen’s sister-in-law, who died in 2014. Our goal is to improve care for young people with cancer by asking them what they need, want, and value.

We spoke to 22 patients, caregivers, and clinicians sharing their stories with us. We heard that AYA patients are balancing hope of increased survival with the risk of treatment that can be debilitating and at times fatal. Patients recognize that they are essentially playing a “chess game” they will eventually lose to cancer, but they don’t want to use up all of their pieces too soon. We learned that AYA want clearer communication from their clinicians about their prognosis, and when additional treatment will no longer prolong life.

We also learned that one important concern was the decision to undergo — or not undergo — fertility preservation. We have now launched a second phase of our study to understand how this decision is made, and how young adults with cancer think about family building.

We are looking for young adults, aged 18 or older, who were diagnosed with cancer between the ages of 15–39 years, and are willing to do a one-time phone interview. We also want to talk to clinicians who care for young adults who were diagnosed with cancer between the ages of 15–39 years.

By sharing your experience with us, you will help us understand what matters most to young adults with cancer when making decisions about building a family. It is important that we hear first-hand from real people who have had to make decisions about cancer care and have thought about whether and how to have a family.

What does the interview involve?

• The interview will ask questions about your experience with cancer care and fertility preservation or other forms of family building.
• If you are a clinician, the interview will ask about your experience helping young adults with cancer make decisions about fertility preservation or other forms of family building.
• It will last about an hour.
• The interview will be recorded and written down, but will not include your full name.
• The interview is voluntary.
• You will receive $50 as a thank you for your time.
• You must be at least 18 years old to join this study.

How do I volunteer or find out more?

If you want to be part of this study or learn more about it, please review our study information sheet. Email the Clare Project if you want to join the study or if you have questions. We hope to hear from you soon.

FB page is: https://www.facebook.com/theclareproject/

Twitter handle is: @clareproject

Kaiser Permanente website on the Clare Project: https://www.kpwashingtonresearch.org/get-involved/be-part-study/clare-project/

Dee

#gyncsm Co-Founder

Young Adults: Life Following a Cancer Diagnosis Joint #gyncsm #mayacc chat January 11,2017

We were so happy to welcome the members of the Metastatic and Young Adult Cancer Community (#mayacc) to our chat on Young Adults: Life Following a Cancer Diagnosis. Thank you Emily Drake (@EK_Drake) for your input and support of the chat.

We had thirty participants and over 1.2 million impressions. You may find the complete analytics here.

After wishing everyone a Happy New Year and giving everyone a chance to introduce themselves we began discussing our topic questions. Some responses to those questions are listed below. To read all the responses, please read our transcript on the Symplur website.

T1: What are some unique aspects of being diagnosed with cancer as a young adult? What are some helpful resources?

• starting families or relationships, isolation from peers who don't understand, lack of financial stability pre-diagnosis
• fertility concerns, missing out on typical young adult milestones while friends have babies and travel and get promotions
• #ayacsm is one of the loneliest things
• SEX!!! Seriously, my doctors never talk about it (I have to bring it up) but it's a huge part of my wellness.
• @FirstDescents has been my very best resource which has connected me to a community of YA with cancer. So much fun too! 

T2: How much health info do you share w/ family, friends, peers at school/work? What are some of the "labels" you encounter?

• I didn't share hardly anything at all the first 2 times I had cancer but the 3rd and 4th I just completely lost my filter
• I overshare, but that's partly bc I'm a #patientadvocate as my day job. I also just overshare.
• Meeting new people over the years I've avoided telling ppl my history bc it seems like a burden on them
• When I was in college, I didn't tell anyone. I had all my surgeries & radiation during vacations.

T3a: In your experience, do providers discuss and provide resources related to surgical menopause? What's important to know?

• OMG hot flashes
• Treating menopause in cancer patients is complex and many providers need education and guidance
• It seems like the focus is on survival - good thing! - but some quality of life aspects may not always get covered
• NO! Been in surgical meno for a yr. Most of the research about meno has bn done on women in natural meno. 

T3b: In your experience, do providers discuss and provide resources related to fertility preservation? What's important to know?

• my HCPs didn't. For women, it costs $$$ & time u might not have.
• Options for fertility sparing are important to discuss as well - we recommend our pts meet with an Oncofertility specialist
• We see young women who had no idea that their surgery could put them into menopause. It can be overlooked during counseling 
• Some of us don't really get counseling on that if we had ER diagnosis and surgery

T4: What is helpful in dealing with the uncertainty cancer brings while still planning ahead?

• Ask for help!
• If you can do something about it, do it. If you can't, at least make the story funny
• Look for an organization for AYA like : @StupidCancer @Hope4YAWC @LacunaLoft
• And because our young pops are so app savvy, apps like @MyHealthTeams can be very useful
• Focusing on other parts of life helps but harder as I age and wonder about long term affects

T5: What are some tips for creating balance among the priorities of health, personal life and career/education?

• I remind my clients all the time we have limited resources: time, energy, finances, etc. It is okay to prioritize resources.
• Don't let anyone define priority for you. If doing nothing gives you joy & is a priority for YOU, then DO THAT
• No advice really, but taking things one step at a time helps
• I try my best to give myself permission to have good days and bad days 

T6: What are some of the roadblocks to working after a cancer diagnosis? 

• Pain, MD appointments, fatigue. Every new job, I ask for a nap room. I've gotta it twice!
• Retaining your health insurance #ACA should be guaranteed for #cancer patients
• Work can be tricky. In a perfect world, you should be able to state needs and seek accommodation. Not always safe

We ended our chat as we always do by asking participants to share their TIL (Today I Learned).

• Some other who get it who I'm excited to follow and learn more about! Thanks for sharing
• TIL from you (who are so kind to share your time, experiences, advice) what life can be like as a young adult w/ cancer-TY!❤
• TIL Two Twitter communities can share resources and support one another #strongertogether 

Scroll down for Resources shared during the chat.

We invite you to join us next month, Wednesday, February 8, 2017 at 9pm ET for our chat on HPV and Cervical Cancer. 

Remember that patients and caregivers are invited to continue our #gyncsm discussions on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm

See you next month!

Dee
#gyncsm Co-founder


RESOURCES:

Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age https://seer.cancer.gov/archive/publications/aya/aya_mono_complete.pdf

Dana Farber Young Adult program (@DanaFarberYAP) http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Young-Adult-Program.aspx

Lacuna Loft @LacunaLoft https://lacunaloft.org/

Stupid Cancer @StupidCancer http://stupidcancer.org/

Hope for Young Adults with Cancer
http://www.hope4yawc.org/ @Hope4YAWC

Cancer and Careers @CancerAndCareer

FORCE's @FacingOurRisk eXamining the Relevance of Articles for Young Survivors (XRAYS) program http://www.facingourrisk.org/XRAYS/digest/winter-2016.php

Facebook: Ovarian Cancer Young Survivors Group
https://www.facebook.com/groups/675225689278954/?ref=br_tf

Riding the Cancer Roller Coaster: Survival Guide for Teens and Young Adults
http://www.teen-cancer.com/

Chemo between classes @ChemobtwClasses

Cancer.net @CancerDotNet List of resources for YA
http://www.cancer.net/navigating-cancer-care/young-adults/resources-young-adults

Video: NOCC's Ovarian Cancer Education Series - Living with Uncertainty
https://t.co/fH8WLciMF6

Jan 11,2017 Joint #gyncsm - #mayacc chat Young Adults: Life Following a Cancer Diagnosis

Although not as common, adolescent and young adult women are diagnosed with gynecologic cancers. Ten percent of the cancers diagnosed in young adults (15-29) are cancers of the female reproductive organs. "Nearly all genital system tumors are carcinomas of the cervix, germ cell tumors of the ovary, and carcinomas of the ovary." (Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age) Of the ~14 million people in the United States living with cancer, one in five is under the age of 40. SEER reports that 72,000 adolescents and young adults are diagnosed with cancer each year.

We are pleased to have #mayacc (Metastatic and Advanced Young Adult Cancer Community) join us for our January 11, 2017 9pmET #gyncsm chat on Young Adults: Life Following a Cancer Diagnosis.

Below are the topic questions that will guide our discussion.

T1: What are some unique aspects of being diagnosed with cancer as a young adult? What are some helpful resources?

T2: How much health info do you share w/ family, friends, peers at school/work? What are some of the "labels" you encounter?

T3a: In your experience, do providers discuss and provide resources related to surgical menopause? What's important to know?

T3b: In your experience, do providers discuss and provide resources related to fertility preservation? What's important to know?

T4: What is helpful in dealing with the uncertainty cancer brings while still planning ahead?

T5: What are some tips for creating balance among the priorities of health, personal life and career/education?

T6: What are some of the roadblocks to working after a cancer diagnosis? 

You can learn more about young adult cancers from these two resources and we hope you join the chat to learn more from individuals and groups with a focus on adolescent and young adult cancer.

• Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age https://seer.cancer.gov/archive/publications/aya/aya_mono_complete.pdf
• Dana Farber Young Adult program (@DanaFarberYAP) http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Young-Adult-Program.aspx

If you want to learn more about how to participate in tweet chats you can read this blog post. We will use both #gyncsm and #mayacc hashtags during this month's tweet chat.

The #mayacc chats are regularly held on 2nd Tuesdays at 9pmET.

We look forward to having you join us for the joint #gyncsm #mayacc chat on Wednesday, January 11th at 9pmET.

Dee
Co-Founder #gyncsm

July 13, 2016 Spirituality & Quality of Life Chat

We were pleased to welcome Meredith Gould (@MeredithGould), writer, sociologist, digital strategist and co-founder and co-moderator of the #hlthsp (Health and Spirituality) chat as our guest for this month's chat on Spirituality & Quality of Life. Our chat had over 1.9 million impressions and 36 participants. You can find the complete analytics here.

Below you will find the questions we used to guide our discussion along with a sample of some of the responses. You can read the complete transcript here. At the end of this post you will find resources shared during the chat as well as other information gathered for the chat.

T1: To frame our discussion: What does spirituality mean to you? How might it differ from religion?

• Spirituality for me is an understanding that we're part of something bigger than ourselves & connected in ways we can't "see"
• #spirituality for me is a sense of inner purpose AND feeling connected to the 'universe' at the same time. :)
• Spirituality is the connection to something greater, religion may help us achieve this
• @ASCO -“Spirituality is aspect of humanity that refers to way individuals seek & express meaning & purpose &the way they experience connectedness to the moment,to self,to others,to nature, &to the significant or sacred” 
• Spirituality gets defined in multiple ways but typically refers to realization/awareness of something greater than self. 

T2: How do you personally define "quality of life"? What role does spiritual life or practices play for you?

• QOL covers a number of different aspects of life - symptom burden, pain, able to perform activities, able to enjoy life!
• QOL for me = doing/participating in things which bring value to my existence. Gardening, playing w grandkids, just being still
• QoL for me: Being able to manage gracefully despite health impediments.
• The greater my spiritual awareness, the better my QoL under all (crappy) conditions.
• such a great point - our spirituality can help our coping mechanism and ultimately, our quality of life
• Quality of life is how I feel, what I'm able to do and contribute, being able to be myself, and be a part of the world

T3: What connections have you experienced btwn spirituality and your overall quality of life? Your mental health? Physical health?

• And so to reverse engineer it: if I'm feeling off mentally/emotionally, I check my spiritual condition
• When I am in touch w spiritual practices, I am more focused, centered and feel healthier. I can deal with a lot of BS
• Spirituality, QoL, health all intertwined. Doing my best, then accepting where I fall short.
• Seems like spirituality gets left out of the healthcare convo but for many patients it is a big part of their life
• I zoom in on these spiritual practices of being: willingness, curiosity, empathy, generosity, delight 

T4a: What impact has receiving/living with a critical diagnosis had on your spirituality? How about your spiritual practices?
T4b: What impact has your spirituality and spiritual practices had on your experience with a critical diagnosis and treatment?

• The impact of truly appreciating its inevitable presence and importance in my life. Yes, made me believe in miracles too
• Relative to chronic illness/pain, I find curiosity is a fabulously helpful useful spiritual practice.
• I would say my spirituality got stronger in light of my dx. My wonder at ordinary things - flowers, rain, mountains, oceans
• That's when I started my love for seeing the sun rise and set
• Well, having spiritual awareness and knowing how to enhance spirituality certainly helps when poop hits the fan o' life.

T5: How/who/what supports your spiritual awareness? What are some helpful digital/social media resources for spiritual support?

• Lots of valuable groups (some private) on FB that provide communities of spiritual support.
• Seriously, the best thing was having my first grandchild 3 years ago. Seeing the wonder of life through her eyes.
• I had a good meditations workshop you could make fit with your own spirituality. Art and music are great spiritual practice
• Our #hlthsp group isn't super chatty (on purpose) but a nice place to find resources: https://t.co/iQrSs21q0O
• There are lots of good articles and resources on Mindfulness. Good place to start. 
• Those free Oprah meditations or the app Calm can be a good starting place

The next #hlthsp chat is Wednesday, July 20th and will be a continuation of the Spirituality and Quality of Life discussion started here. We hope you will join us.

Can't wait until the 20th or want to comment on tonight's discussion? We are on Smart Patients at https://www.smartpatients.com/gyncsm.

The next #gyncsm chat will be on Wednesday, August 10th at 9pm ET when we will discuss Shared Decision Making / Patient-Centered Care with the Patient Empowerment Network  (@power4patients, www.powerfulpatients.org) See you then.

Dee
Co-moderator #gyncsm chat


RESOURCES

Desperately Seeking Spirituality by Meredith Gould
The Light Within by Lois Ramondetta, MD and Deborah Sills

Other resources not mentioned during the chat:
ASCO 2016
Spirituality, symptom distress and quality of life of Latin American patients with advanced cancer (LAAdCa): A multicenter study.
http://meetinglibrary.asco.org/content/161925-176

Survey of spiritual quality of life among survivorship and distress guidelines.
http://meetinglibrary.asco.org/content/163893-176

Just what are spiritual needs of cancer patients? An empirical study in a diverse population.
http://meetinglibrary.asco.org/content/164936-176

Spirituality and Palliative Care
http://ecommons.luc.edu/cgi/viewcontent.cgi?article=1023&context=socialwork_facpubs

ASCO Palliative Care meeting 2015Effect of a spiritual care training program on patient quality of life and spiritual well-being.
http://meetinglibrary.asco.org/content/155366-165

Cancer Today Magazine A New Look at Spirituality http://www.cancertodaymag.org/Summer2014/Pages/Defining-Spirituality-Cancer-Patients.aspx

How religious and spiritual beliefs relate to cancer patients:physical, mental and social well-being
http://ecancer.org/news/7609-how-religious-and-spiritual-beliefs-relate-to-cancer-patients----physical--mental--and-social-well-being.php

Celebrating Cancer Hashtag Communities and a Moonshot

The #gyncsm community is pleased to be joining in the activities celebrating our cancer hashtag communities and the Moonshot Program. Many representatives of our hashtag communities have been invited to the Moonshot Summit in Washington, DC or one of the Regional Satellite Summits. We invite everyone in the gynecologic cancer community to join with survivors, advocates, researchers and others for one of the chats listed or to submit an idea to the Moonshot Program (link provided below). 

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.

1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
2. The 5^th Anniversary of the beginning of Breast Cancer Social Media (#BCSM) and the beginning of cancer hashtag communities on the web happens July 4!

Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27:#BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
--Expanding Clinical Trials
--Enhanced Data Sharing
--Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29:Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29:#Hcchat will conduct the official Moonshot chat on Twitter (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic "Will the Moonshot lead to the death of cancer?" This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon's Cancer Act and author of "The Death of Cancer."

Thu 6/30:#LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
--Cancer Immunology and Prevention
--Tumor Evolution and Progression
--Implementation Sciences
--Pediatric Cancer Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30:Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03:#BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04:5^th anniversary of #BCSM and cancer hashtag communities

Mon 7/04:#BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you"ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/



  AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC


















Original blog post appeared on lcsmchat.org site. 


Dee and Christina
Co-founder's #gyncsm Chat (est. 2013)

Nutrition / Exercise November 11th Chat

On Wednesday November 11, 2015 at 9pmET / 8pmCT / 6pmPT the gyn cancer community will be chatting about Nutrition and Exercise. Research has shown the value of healthy eating and movement (exercise) in the survivorship and quality of life of cancer patients.

We are pleased that Dana-Farber Cancer Institute (@DanaFarber) and LIVESTRONG (@livestrong) will be joining us.

Dana-Farber recently shared a slide show on the Myths About Food and Cancer. We invite you to take a moment and view these slides.
 (http://www.slideshare.net/DanaFarber/myths-about-food-amp-cancer )

Myths About Food and Cancer from Dana-Farber Cancer Institute

Since 2007 LIVESTRONG and the YMCA have partnered to provide a program for cancer survivors to promote physical activity after a cancer diagnosis. The 12 week program helps to improve the strength and quality of life of survivors. Learn more about their program here.

Our conversation will be guided by these topic questions: 

T1: What role does exercise play during treatment? How does it affect quality of life / outcomes? Did you exercise during treatment?

T2: Many gyn cancer patients undergo abdominal surgery. What exercises are recommended in recovery? long term?

T3: What are some resources for patients and survivors about exercise? What programs/exercises have helped you most?

T4: We periodically hear news about sugar and cancer...  Does sugar feed cancer? Should we avoid all sugar? Why do we need sugar?

T5: Are there specific foods GYN cancer patients should avoid? What's being discovered re: nutrition and gyn cancers?

T6: For cancer survivors, is nutrition more about finding balance or it is more about cutting certain things altogether? Tips?


We hope you can join us. See you on the 11th!

Dee
Co-Founder & Co-Moderator

#LCSM chat 8/27 8pm ET: Let's get social... in our health?

Christina and I are pleased to be joining the #lcsm community to discuss "Getting Social with your Health"  on Thursday August 27, 2015 at 8pm ET. Below is the guest post Christina wrote about the chat for the #LCSM Chat Website. 

The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.

What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.

I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming the #gyncsm community for gynecologic cancers. The #LCSM community has a great focus on turning ideas into action, pushing for collaboration, and is not afraid to get technical.

Guiding our discussion for the Thursday, August 27th #LCSM Chat at 8 PM (Eastern Time) will be:

T1: What are the benefits to patients and loved ones in connecting and sharing on social media? Why do you participate?

T2: What are your tips for getting started in using healthcare social media to connect and learn about a condition?

T3: What are some considerations and cautions when it comes to getting social with your health?

T4: How do we bring more people into the important discussions happening in digital health communities like #LCSM?

The #LCSM community is vibrant and welcoming. It is the perfect setting to check out getting social with your health – no matter your health background. I hope you’ll join us for a great discussion. Dee and I are honored and excited to participate.

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat. You can also check out the #gyncsm community disclosure statement on participating in healthcare social media.


Christina Lizaso (@btrfly12)
Co-Founder and Co-Moderator #gyncsm community
Moderator #patientchat

Further Reading:

• The Nature of Online Communities – #HCLDR (Healthcare Leadership) Blog
• Communicating the experience of illness in the digital age by Susannah Fox
• MedX Panel – Communicating the experience of illness in the digital age (video, notes & tweets)
• Power of twitter chats in in their ability to build community
• How to Be a Twitter Chat Champion via @np_blogexchange

We hope you can join us!

Dee 

Co-Founder and Co-Moderator #gyncsm Community

Dealing With Anxiety July 8, 2015 Chat

One of the questions on our October of 2014 survey asked about chat topic ideas for the coming year. Over 90% of the survey takers rated "Dealing With Anxiety" as important or moderately important topic. Tonight's chat proved the importance of the topic among the members of our community. We had 53 participants, 536 tweets in the hour and over 1.2 million impressions. We were happy the Association of Oncology Social Workers (@oncosocialwork) was able to join us.

The questions that guided our discussion and a few of the responses:
T1: What instances seem to cause the greatest anxiety among cancer patients and survivors? What are your triggers?

@gyncsm T1 Whenever I have to take a blood test or ultrasound or other test. Waiting for the results is hard.

— Lisa Gonzales (@runlikeacoyote) July 9, 2015

T1 My greatest anxiety is the annual scans & tests I need to make sure cancer aint back. Triggers is when I see the hospital #gyncsm

— Dr. Gia Sison (@giasison) July 9, 2015

T1: anxiety regarding the cost of cancer care is huge - not just monetary - also time away from work/family/friends #gyncsm

— Shannon Westin (@ShannonWestin) July 9, 2015

T2: Have you spoken to your healthcare provider about what causes your anxiety? Did it help? Do providers bring up and provide info?

T2: AS a provider, I find a calm demeanor combined with a detailed plan seems to reduce my patients anxiety. #gyncsm

— Rick Boulay,MD (@journeycancer) July 9, 2015

T2 Patients want to be "good patients" for their doctor - don't want to admit they need help at times #gyncsm

— AOSW (@oncosocialwork) July 9, 2015

@MDAndersonNews uses a distress thermometer to help determine which patients need a referral for support #gyncsm

— Shannon Westin (@ShannonWestin) July 9, 2015

T3: What are tips and resources to relieve anxiety? What have you found to be helpful in dealing with anxious feelings?

@gyncsm T3 Running helps me deal with anxiety. It reminds me I AM healthy again. Also, sharing my feelings w/ friends & asking for prayers.

— Lisa Gonzales (@runlikeacoyote) July 9, 2015

@gyncsm Yoga has changed my life, and not hiding any struggles, it's really helped. #gyncsm

— Kristal Turner (@KristalTurner) July 9, 2015

T3 diaphragmatic breathing, relaxation skills, exercises, journaling, lists of "projects", many other skills #gyncsm

— Alene Nitzky Ph.D RN (@AleneGoneBad) July 9, 2015

T4: In the bigger picture, what are ways that we can change the healthcare system itself so that patients experience less anxiety?

Need to use allied health professional (social work, nurse navigators, etc) more to provide resources to patients and caregivers #gyncsm

— Jen Burzawa (@jburzawa) July 9, 2015

T4 maybe some structured check-ins - telemed/other during that wait post visit for first check up; referrals ahead of time #gyncsm

— Christina Lizaso (@btrfly12) July 9, 2015

T4 Make navigating insurance processes easier - just making the appointment shouldn't cause anxiety! #gyncsm

— AOSW (@oncosocialwork) July 9, 2015

If you missed the chat you may read the transcript here and the analytics here. Please scroll down for list of resources mentioned during the chat. And you may continue the conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm

We hope you will join us next month on August 12, 2015 to discuss Dealing with Short and Long Term Side Effects. Please remember to tweet using the #gyncsm hashtag to share information with our community.


Dee
#gyncsm co-moderator and co-founder

RESOURCES

Definitions of Anxiety and Depression
http://www.anxietycoach.com/anxiety-and-depression.html

NCI  @theNCI - Adjustment to Cancer:Anxiety and Depression
http://www.cancer.gov/about-cancer/coping/feelings/anxiety-distress-pdq

Cancer.Net @cancerdotnet
http://www.cancer.net/coping-and-emotions/managing-emotions/anxiety

Cancer Care
http://www.cancercare.org/tagged/anxiety?gclid=CJ3A86XkzMYCFQmKaQod4GUPuA

Cure Today: Scanxiety With Lynch Syndrome
http://www.curetoday.com/community/georgia-hurst/2015/04/scanxiety-with-lynch-syndrome

ASCO One in Three People with Cancer has Anxiety or other Mental Health Challenges
http://www.asco.org/press-center/one-three-people-cancer-has-anxiety-or-other-mental-health-challenges

JCO : Screening, Assessment and Care of Anxiety and Depressive Symptoms...
http://jco.ascopubs.org/content/32/15/1605.full

Gyn Onc : Depression, Anxiety, and Quality of Life in Patients with Epithelial Ovarian Cancer http://t.co/bdOGIIIcGU

British Journal of Health Psychology: Social support, anxiety and depression after chemo for ovarian cancer: A prospective study http://t.co/YmGwnUKQLx

JCO : Evidence-Based Treatment of Anxiety in Patients With Cancer 
http://t.co/99PebxIS8v

CancerConnect.com   Psychosocial Needs of Survivors of Gynecologic Cancers Must Be Addressed http://t.co/4lMSF9w5AZ

Medivizor 15 tips for Coping with Scanxiety
http://medivizor.com/blog/2014/06/03/15-tips-cope-scanxiety/

13 Things People With Anxiety Are Tired of Hearing, And What You Can Say Instead
http://themighty.com/2015/07/13-things-people-with-anxiety-are-tired-of-hearing-and-what-you-can-say-instead/?utm_campaign=site_twit&utm_source=twitter&utm_medium=social

Health Journeys - Meditation resources
http://www.healthjourneys.com/Store/Anxiety-Relief/29

NOCC - Living with OC
http://www.ovarian.org/coping.php

Reiki: Helping to Relieve the Anxiety of Cancer Patients
http://t.co/o9wP7XvfPw

Society of Gynecologic Oncology @SGO_org
https://www.sgo.org/

NY Times:
Anxiety Lingers Long After Cancer
http://well.blogs.nytimes.com/2013/07/12/anxiety-lingers-long-after-cancer/?_r=1
Lost in Transition
http://well.blogs.nytimes.com/2015/03/16/lost-in-transition-after-cancer/

@nannyangel

Nanny Angel Network provides free, professional relief childcare to mothers with cancer & their families.

Zero Suicide Toolkit for Professionals

http://zerosuicide.sprc.org/toolkit

July 8th chat - Dealing with Anxiety

This month on Wednesday July 8, 2015 the #gyncsm community will be discussing "Dealing with Anxiety".

Anxiety is defined as "a feeling of worry, nervousness or unease". The NCI states that anxiety disorders include excessive anxiety, worry, fear, and/or dread.

We hope that you will join us in sharing what aspects of cancer cause you anxiety and what you have learned that helps you cope with anxiety.

Below are the questions that will guide our discussion.

T1: What instances seem to cause the greatest anxiety among cancer patients and survivors? What are your triggers?

T2: Have you spoken to your healthcare provider about what causes your anxiety? Did it help? Do providers bring up and provide info?

T3: What are tips and resources to relieve anxiety? What have you found to be helpful in dealing with anxious feelings?

T4: In the bigger picture, what are ways that we can change the healthcare system itself so that patients experience less anxiety?

To prepare for the chat, here is a topic overview from the National Cancer Institute: "Adjustment to Cancer: Anxiety and Distress".  

We look forward to having you join us at 9pm (EST) on the 8th.

Dee

#gyncsm co-moderator

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