Surviving the Holidays - December 2014 Chat

This month we discussed how gynecologic cancer patients can "Survive the Holidays" while also dealing with treatment schedules, fatigue and the expectations of others. In addition to our Health Care Advisors (Dr D Dizon. Dr R Boulay, Dr A BeckerShutte), this month we were please to have The Robert H. Lurie Comprehensive Cancer Center of Northwestern University (@LurieCancer) and Mary Jo Graden (@maryjograden) a certified oncology social worker at Lurie join us. 

We welcomed 32 participants, averaged 12 tweets per participant and had over 1 million            impressions. You can find more of our chat statistics here and the transcript of our chat here.

The topic questions that drove our discussion this evening were:

T1: How has your experience with cancer impacted your holiday traditions and celebrations?

T2: What tips can you offer to those going through the holidays while in active treatment?

T3: What's your advice on handling family and friends who still expect you to create the “perfect” holiday?

T4: How will your holidays be different this year? Will you ask for help? Did you ask your healthcare team about food & activities?

Please check below for the resources that were shared during the chat. Patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/yHJfsjcmMS .

We look forward to you joining us on January 14th, 2014 for our discussion of "Gyn Cancer Risk Factors". 

Christina and I wish you a very Happy Holiday and a Healthy and Happy New Year. 

Dee

Resources:

Celebrating the Holidays after a Cancer Diagnosis: A Survivor's Guide
https://www.sgo.org/sgo-blog-3/

Holiday Eating Tips If You're in Cancer Treatment via @AmericanCancer 
http://t.co/dbDdU7kSTX

Coping with Cancer and the Holidays - A Delicate Balance via @COPING_cancer 
http://t.co/ZSxvFK9SFK

Five Ideas for Maintaining your Holiday Cheer  via @CancerDotNet 
http://t.co/LmWsHY9Z8t 

4 Holiday Party Tips for Cancer Patients @MDAndersonNews 
http://t.co/8Q4QJc9jsL 

Challenge of Self-Care during the Holidays via Cancer Help Hub
http://t.co/NqY8YZagpR

Topic of the Month: Coping With Cancer During the Holidays - 
http://t.co/p4DFVwpiUZ

Heartfelt blog post via Mommy Upgrade on loss to cancer paired w/ mouth-watering make-ahead french toast recipe to bring a friend http://t.co/mcKCXtofi6#gyncsm

The challenge of being alone - @CancerCare
http://t.co/HY3bGzACgq

December Chat Topic Questions- Surviving the Holidays

Below are the topic questions for this month's ( 9pm EST on Dec 10, 2014 ) chat on "Surviving the Holidays". We are pleased to have The Robert H. Lurie Comprehensive Cancer Center of Northwestern University ( @LurieCancer ) join us for our discussion.

T1: How has your experience with cancer impacted your holiday traditions and celebrations?

T2: What tips can you offer to those going through the holidays while in active treatment?

T3: What's your advice on handling family and friends who still expect you to create the “perfect” holiday?

T4: How will your holidays be different this year? Will you ask for help? Did you ask your healthcare team about food & activities?

Christina and I look forward to having you join us for a lively and helpful discussion. 

Dee

#gyncsm Co-moderator

IMPORTANT UPDATE : Long Term Survivor Study

In May we shared with the #gyncsm community information about a long term survivor study being conducted by The Consortium for Long-Term Survival (A Department of Defense-Funded Project , Massachusetts General Hospital , Michael Birrer PI, Lari Wenzel Co-PI). Read the original post here. 

We recently learned that the study group would now include women who are 8+ year survivors of stage III and IV ovarian cancer ( original study was for women 10+ year out from initial diagnosis) . Please see the image below for contact information. 

Dee
#gyncsm co-moderator

Complementary / Alternative Therapies - November 2014 Tweet Chat

This evening we discussed complementary and  alternative medicine (CAM).

"Complementary medicine refers to treatments that are used with standard treatment.” via @theNCI
"Alternative medicine refers to treatments that are used instead of standard treatment.” via @theNCI

Examples of complementary therapies include: acupuncture, tai chi, massage, yoga, meditation.

This month we welcomed 26 participants and averaged 10 tweets per participant.  You can find more of our chat statistics here and the transcript here. The questions we used to lead the discussion were:

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? 

Please check below for the resources that were shared during the chat. And remember patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/yHJfsjcmMS .

Christina and I look forward to you joining us on December 10, 2014 for our discussion of "Surviving the Holidays". 

Dee

RESOURCES*some links updated 8/2016

@theNCI  Complementary and Alternative Medicine workbook http://cam.cancer.gov/health_information/talking_about_cam.htm

NIH Office of Dietary Supplements fact sheets: https://ods.od.nih.gov/factsheets/list-all/

What do the terms integrative, complementary & alternative mean? from @NIH_NCCIH https://nccih.nih.gov/health/integrative-health 

How to talk to your doctor about CAM: http://cam.cancer.gov/docs/workbook/tips_for_talking_to_provider.pdf

Update (2016) - NCCAM now called National Center for Complementary and Integrative Health https://nccih.nih.gov/
NIH- NCCAM National Center for Complementary and Alternative Medicine 

http://www.sciencedirect.com/science/article/pii/S0090825801965151

Society for Integrative Oncology - http://www.integrativeonc.org/

Integrative Health NYU - http://cancer.med.nyu.edu/integrative

@CancerCenter Cancer Treatment Centers of America
@AnnieAppleseed Project handout http://t.co/LCYQIFbi28

Newsletter CAM highlights: http://cam.cancer.gov/news_and_events/occam_newsletter.htm

Books:
Mind-Body Practices in Cancer Care http://t.co/YTnjtdvHHW

Cancer Care for the Whole Patient http://t.co/4uOkJH6Zk3

Articles:
Updated (2016) Use of Complementary and Alternative Medicine among Women with Gynecologic Cancers
http://www.ncbi.nlm.nih.gov/pubmed/11855870 

Updated (2016) Complementary Medicine in Palliative Care and Cancer Symptom Management 
http://www.ncbi.nlm.nih.gov/pubmed/17034678

Four Reasons to Consider Probiotics With Radiation Therapy
http://t.co/vOHIffZzTR

Clinical Practice Guidelines on the Use of Integrative Therapies as Supportive Care in Patients Treated for Breast Cancer - http://t.co/oQDy2HwuoQ

What Integrative Medicine Is… and Is Not in @AWomansHealth By Barrie R. Cassileth, PhD http://awomanshealth.com/what-integrative-medicine-is-and-is-not/

Updated (2016) A RANDOMIZED, CONTROLLED TRIAL OF MINDFULNESS-BASED ART THERAPY (MBAT) 4 WOMEN W/ CANCER 

http://www.brown.uk.com/palliative/monti.pdf

 

Jin Shin - Natural Positive Self Help for People with Cancer https://t.co/hpcz9xqlk2

Where to go to find information on specific CAM therapies:
NCI LiveHelp https://t.co/6sCCNLaTZa

Medline Plus : for info on CAM therapies. http://www.nlm.nih.gov/medlineplus/

Search PubMed for Specific CAM articles based on scientific studies http://t.co/9u0XVh0ZUY

Check credentials under your state's license verification: NYS= http://t.co/FkG586Z81X

Video:
Community Voices: Stories of Survival by @Smart_Patients - Stephanie Sugars http://t.co/fgHhkQEGgh

Webinar:
Complementary Therapies in Cancer Care @cancer_connect webinar w/ Barrie R. Cassileth, PhD http://t.co/jViOxTYxrz

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

We Asked & You Answered

Thank you to everyone who completed our survey. Thirty-seven people from survivors to researchers to gynecologic oncologists completed the survey. Please note, you could skip questions so not all questions were answered by all 37 people.

The number of respondents who were patients or survivors was 54% which is similar to the percentage of patients / survivors who participate in the monthly chat. We also heard from caregivers (2.7%) , and advocates ( 10%) . Twenty-four percent of the respondents were healthcare providers and five percent were cancer researchers. We did have a few individuals who were survivors / caregivers of other cancers who also took the survey.

Of the patients / survivors who took part in the survey, a majority of them had been diagnosed with ovarian cancer while we had three cervical cancer patients and three endometrial cancer patients complete the survey.

Health care providers who filled out the survey were predominantly gynecologic oncologists, radiation oncologists, and nurses but we also had one peer-to-peer support person and a health reporter participate.

When we asked you why you took part in the chat, we learned that many of you joined us to learn and because the topics were interesting. You also joined us to meet other community members, to provide support and to share advice. A number of the respondents joined us to share knowledge to improve the quality of care of women diagnosed with these diseases.

We asked you which topics (Sept 2013 -2014) you found most important. Based on the average rating the top 5 topics were:

• Advocating for Yourself and Others
• Ovarian Cancer Awareness
• Clinical Trials
• Fertility and Sexuality
• Caregiver Family issues

Then we provided a list of topics for 2015 and asked you which ones you felt were most important. The top 5 topics are:

• Dealing With Long and Short Term Side Effects
• Personalized Medicine
• Dealing with a Recurrence
• Dealing with Anxiety
• What I wish I knew Before Treatment

In the next question we provided some areas in which you could use what you learned in the chat. Many people used or shared the resources mentioned in the chat or on our blog, advocated for yourself and others, and made changes in your personal or professional practice.

When we asked you how we could improve the community, you told us to

promote our blog more and to increase how many patients participate in the chat. One person suggested we reach out to cancer centers to post about the chat. You also asked for the questions in advanced so you could be bettered prepared. We started doing that for the October chat and will continue to do so.

We asked you how often you participated in our chat. Ten of you had not participated in the chat at all. Seventeen respondents took part 1-5 times and 6 took part between 6 and 13 times.

We saw similar results when we asked you how frequently you visited our blog, with eight people having never visited the blog. Fourteen visited from 1-6 times. And five people reported that they visited the blog 10+ times.

Some other important things shared:

You were happy that your non-professional voice was heard.

You asked to have a spot in a blog to share your blogs. (We do have links to resources and the major gyn cancer organizations on our blog. )

Some were a bit uncomfortable in the company of physicians. (We hope our new partnership with Smart Patients will allow you to feel better connecting with your peers. Be sure to register at https://www.smartpatients.com/gyncsm to continue discussing our chat topics.)

We also heard from one person that we provided “fuzzy” information. We apologize if we are not communicating in the best way for you to understand the information. Please contact us via e-mail ( gyncsm@gmail.com ) with any issues you may have.

We appreciate the feedback you have provided and will use it to plan our 2015 chat topic list and as a guide as we grow our community.

Thank you!

Christina Lizaso

Dee Sparacio

#gyncsm Co-moderators 

Recurrence - What Now? October 2014 Chat

Tonight our topic was "Recurrence- What Now". It was a lively discussion with health care providers and researchers  providing information and survivors sharing a variety of thoughts about having a recurrence from dealing with the fear of recurrence to how they chose their treatments after recurring.

We had thirty-seven participants and 435 tweets in the hour. You can find a copy of the transcript here and analytics here.

The topic questions we presented:

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?

Please scroll down for the Resources shared during the chat.

Remember that you can continue this conversation or ask questions about the topic on Smart Patients. Be sure to use our link  -  https://www.smartpatients.com/gyncsm
to be connected to our community and its discussions. This platform is open to those impacted by cancers and their caregivers and families only. Please read our post for more information.

Next month's tweet chat topic will be Alternative and Complimentary Therapies. Please join us on November 12, 2014 at 9pm EST.

See you in November,

Dee
Co-founder/Co-moderator #gyncsm Chat


Recurrence Resources


All Gyn Cancers: 
SGO article on Gyn Cancer Surveillance - http://t.co/jE1zHVNKNk

Addressing Fear of Cancer Recurrence -
http://www.ncbi.nlm.nih.gov/m/pubmed/24756313/i=8&from=ovarian%20cancer%20recurrence%20quality%20of%20life

Psychological responses to cancer recurrence @DrZVO http://t.co/zK74g3F9sC

Clinical trials - OCRF - http://www.ocrf.org/about-ovarian-cancer/clinical-trials
                      -NCI http://t.co/ta9WcYPvuc
                      - OCNA http://t.co/kvsH0Cbuf9
                      - EmergingMed http://t.co/ol70kBmFJw

"Autonomy" Dr Don Dizon  http://connection.asco.org/Commentary/Article/ID/3289/Autonomy.aspx

Online Support : http://www.inspire.com/

When Cancer Comes Back: Cancer Recurrence via @AmericanCancer http://t.co/8eAUbV2yUV

Tech Times  3 in 10 Cancer PatientsStruggling with Anxiety, Depression  http://www.techtimes.com/articles/17339/20141007/3-in-10-cancer-patients-struggle-with-anxiety-depression.htm#ixzz3FSxokl3l

Dealing with Cancer Recurrence Cancer.Net http://t.co/pRKzR5c2Z8

SURVIVORSHIP: Six Tips for Managing Fear of Cancer Recurrence. Via MSKCC http://t.co/hAxrQwtjUv

Ovarian Cancer Recurrence: 

Cancer.Net http://t.co/mXk8NcO1KQ

NCI http://t.co/I0iR9eDHPL

Risk of recurrence chart http://t.co/I0iR9eDHPL

Recurrence guide @NOCC_National http://t.co/szfq9NsnV3

Top 10 Warning Signs of Ovarian Cancer http://t.co/MmsrYaHQvi

Connect with Other Survivors OCNA http://t.co/5FbqHtzY0C

Hope Annie Ellis https://www.youtube.com/watch?v=NAgccM84HXw

Drug Combo Shows Promise for Women with Recurrent Ovarian Cancer http://t.co/1pftFKizuO

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

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

Help Us Plan- The Gyncsm Survey

Last month Christina and I had a Google Hangout. I live in NJ and she lives in Texas. So for the past year we have been communicating strictly via e-mail.  This was the first time we talked face to face since we founded the #gyncsm chat.

We talked about celebrating the community's one year anniversary and what we could do to enhance the community experience ( more about that in October). We also discussed who participates in the monthly chat and how to increase the number of  @gyncsm followers who participate in the chat. As we began generating a list of topics to cover during our  2015 #gyncsm chats we realized that we should ask our participants what topics were important to them in 2014, what topics they liked best from 2014 and how they used the information they learned by taking part in our chats.

So over the next few weeks we developed the questions and asked our health care moderators for their input regarding which questions to use in the final 10 question survey.

During our September 10th chat Christina tweeted an invitation to fill out the survey. Twenty-two people to date have completed the survey. Thank You!

If you haven't completed the survey, please take the time today to go to the link below

https://www.surveymonkey.com/s/5QNDJ7K 

and answer the questions. The survey is open to all- healthcare providers, caregivers, patients, survivors, researchers.  We are listening and your input is valuable to us as we plan future chats. Thanks again.


See you on October 8th ( 9pm EST) for our chat on Recurrence.

Dee
Co-moderator.

#hachat on Ovarian Cancer

Christina and I hosted the WEGO Health ( @wegohealth) health activists chat (#hachat) on Tuesday Sept 16, 2014. The topic of the chat was Ovarian Cancer Awareness Month. We were joined by 36 other participants for a discussion that ranged from ovarian cancer symptoms to the pelvic exam controversy to were to go for support. 

The topic questions were:

T1: Let’s start by talking generally about ovarian cancer - #ovca. What is it? What are the risks factors?

T2: Why is it important to raise awareness of ovarian cancer during September ( and year round) ? What are you doing to raise awareness?

T3A: Does every gyn cancer have a screening test? What about #ovca?

T3B: If you are an OC survivor did you experience symptoms? What were they?

T4A: There is some controversy about annual Pelvic exams. Let's discuss that a bit.

T4B: Do you think pelvic exams should continue to be used?

T5: Where can newly diagnosed women with ovarian cancer or other gyn cancer go for information and support?

You can find a transcript of the chat here. Resources shared can be found below. 

Thank you WEGO Health for the invitation to share ovarian cancer information with your community of health activists. 

Dee

co-moderator

RESOURCES

Ovarian Cancer information

NCI

http://www.cancer.gov/cancertopics/pdq/prevention/ovarian/Patient/page2

OC Risks/ Hereditary Cancer Risks NOCC

http://www.ovarian.org/are_you_at_risk.php

Statistics OCNA 

http://www.ovariancancer.org/about/statistics/

Colleen's Dream Foundation Fact Sheet OC

embedded in tweet https://twitter.com/Billy_Cundiff/status/390482133636354048/photo/1

Symptom Diary

http://www.cdc.gov/cancer/knowledge/pdf/CDC_GYN_SymptomsDiary.pdf

Ovarian Cancer Studies

Treatment 

http://www.newswise.com/articles/more-than-60-percent-of-ovarian-cancer-patients-do-not-receive-recommended-treatment-study-shows-women-live-longer-with-guideline-based-care

Articles - Pelvic Exams 

Most Women Don’t Need Regular Pelvic Exams via @USNews http://t.co/fiJsUtsXUc

Healthy Women Do Not Need Routine Pelvic Exams via @washingtonpost http://t.co/n2NEI0d0Wy The Dispute Over Annual Pelvic Exams via @nytimes http://t.co/J79Cc4cZh8 What You Need to Know About New Pelvic Exam Guidelines via @TodayShow http://t.co/DiAl0XboAY

Books

Susan Gubar - Memoir of a Debulked Woman

OVCA Organization Twitter Accounts

@ocna @NOCC_National @OCRF

@GYNcancer @SGO_org @Globeathon

Support resources

@CancerHopeNet @imermanAngels @Livestrong @Cancercare

Online peer support & info-sharing sites with #ovca groups: @smart_patients @teaminspire

List of gyn cancer blogs http://list.ly/list/NRQ-gynecologic-cancer-blogs

Survivor Stories on Gyncsm Blog http://t.co/CsZEWadw68