Wednesday, December 9, 2015

December 9: Looking Back...Looking Forward


This month's chat gave us an opportunity as individuals and a community to reflect on the past year and prepare for the new year. We had 38 participants take part in the chat and had over 13 Million impressions. You may find our transcript here and our analytics here.

Before we began discussing our questions we announced that after two years as one of our healthcare moderators, Dr. Don Dizon will be stepping down. We appreciate the time, support and insights Dr. Dizon shared with us as we built our community. We are pleased that Dr. Shannon Westin will be joining Dr. Merry Markham, Dr. Rick Boulay and Dr. Anne Becker-Schutte as a healthcare moderator.

Our questions and some responses:

T1: What are some things you did in 2015 that brought you satisfaction? What steps have improved your overall quality of life?
  • Spending time with family
  • Painting
  • Drinking more water each day
  • Getting rid of negativities and dwelling on the positivities
  • I teamed up with PBS to create a documentary on cancer survivorship, due out next June @journeycancer
  • Thrilled that Sunstone Press published my book @BrightHeidi
  • published our data regarding health issues experienced by gyn ca survivors during and after treatment http://www.ncbi.nlm.nih.gov/pubmed/26245979 - Dr. Shannon Westin
  • release of book 100 Questions and Answers About Ovarian Cancer - Dr. Don S. Dizon and Dee Sparacio


T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2016?

  • try exercising in 2016
  • wish I had taken more time to relax and be with my family
  • take a little time for my self
  • Get back to reading a novel per month


T3: What has #gyncsm done well? What do you find most helpful from our chats, posts, blog, etc.?

  • All & anything #gyncsm is doing is great! Communication is KEY to unlock my future!
  • The forum to post ideas and support the community
  • Brought together patients, clinicians, physicians, researchers, etc all in one supportive community
  • GYNCSM filled a the void of an online active women's cancer social network
  • The advantage of #gyncsm is the good signal/noise ratio and an active group of people who care.


T4: How might we enhance the #gyncsm community for ALL participants? What would you like to see from #gyncsm in 2016?
  • anyone be interested in discussing some research presented at national meetings?maybe quarterly? Or build a relevant paper into the topic of the month
  • a journal club would be a neat idea
  • Maybe have a list of folks who might be interested in helping w/ research? Always looking 4advice from pts!
  • We'd love to reach more survivors, loved ones and caregivers. Your ideas are welcome.
  • perhaps creating connections at oncologists' offices to bring in others


T5: How might #gyncsm foster collaboration in the women's cancer space? Topics you'd like to see covered? Ideas to get more people involved?

  • Definitely increase the interaction with @SGO_org - this has already started!
  • Realistic & mentally sound advice i.e. Sex after Hysterectomies


We ended our chat as we always do asking participants to complete the statement Today I Learned (TIL).
  • TIL-again-the commitment and compassion that is the backbone of the @gyncsm community.
  • TIL (but really knew already) GYNCSM is a great group committed to advocacy and education for women's cancer survivors …
  • TIL: Self care is essential to be able to care for others


Christina and I thank you for a wonderful year of conversations.


We look forward to having you all join us again in the New Year. We begin 2016 with a discussion on Caring for the Caregiver. We hope you will join us on Wednesday January 13, 2016 at 9pm ET.


Wishing our entire community Happy Holidays!


Dee
Co-Moderator

Friday, December 4, 2015

Looking Back ...Looking Forward - December 9, 2015 Chat


Over the past twelve months the #gyncsm community has grown. We've partnered with Smart Patients, included more guests in our chats, and conducted a joint chat with the #hpm community. We've seen an increase in the number of chat participants (averaging 47 participants per chat) and had well over 1 million impressions in a majority of our chats.

Embracing this season of reflection, this month's #gyncsm chat topic is Looking Back… Looking Forward. Join us on Wednesday December 9,2015 at 9pm ET/8CT/6PT.

We'll give our participants - survivors, caregivers, advocates, health care providers and researchers alike - a chance to Look Back at their year on a personal level and as part of our community. Then we will Look Forward to 2016 and what new things we can can do as individuals and as a chat community.

Our topic questions will include:

T1: What are some things you did in 2015 that brought you satisfaction? What steps have improved your overall quality of life? 

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2016?


T3: What has #gyncsm done well? What do you find most helpful from our chats, posts, blog, etc.?


T4: How might we enhance the #gyncsm community for ALL participants? What would you like to see from #gyncsm in 2016?

T5: How might #gyncsm foster collaboration in the women's cancer space? Topics you'd like to see covered? Ideas to get more people involved?
 

We hope you will join us and share your past experiences and your hopes for the year to come and for the #gyncsm community.


Dee
#gyncsm co-moderator


Wednesday, November 25, 2015

With Gratitude

This Thanksgiving Holiday we would like to express our gratitude to everyone who has helped create, grow and support the #gyncsm community this year!




Dee and Christina 
#gyncsm Co-Founders

Wednesday, November 11, 2015

November 11th : Nutrition and Exercise Chat

This month we had Brooke McMillan from LIVESTRONG (@LIVESTRONG) as well as William Greider (@DanaFarber), Stacy Kennedy (@stacykennedyrd) and Nancy Campbell (@exercise_cancer) from Dana Farber Cancer Center as our guests for this fact-filled and fast-paced discussion of Nutrition and Exercise. This chat's analytics were the best of any chat of 2015 with 88 participants, 823 tweets and over 18,000,000 impressions!

Topic questions and a very small sample of the responses are found below. You can also view a chat recap by @LIVESTRONG here. For additional information on recommended exercises, diet, foods to eat and foods to avoid we recommend reading the complete transcript - available here.

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?


Please scroll down for Resources shared during the chat. And remember that you may continue our conversation about nutrition and exercise on Smart Patients (https://www.smartpatients.com/gyncsm).

We want to thank all participants in this chat both regulars (patients/survivors/healthcare providers) and new community members.  We look forward to having you join us on December 9, 2015 at 9pmET | 8pmCT | 6pm PT for the Looking Back and Looking Forward chat.

Dee
Co-Moderator



RESOURCES:

NUTRITION

Nutrition for the Person with Cancer - ACS https://t.co/ByOEMsuWvz

@DanaFarber : FREE nutrition and cancer app:  https://t.co/37ELiVMrYe 

@DanaFarber Myths about Food and Cancer Slideshow https://t.co/ykP7n5jdbm 

@DanaFarber "Does Sugar Feed Cancer"  https://t.co/kkzzaegxp5 


LiVES study: healthy lifestyle and PFS in #ovariancancer https://t.co/4kHGSaWc9R

Nutrition Recommendations During and After Treatment via @CancerDotNet https://t.co/Ngy9jhGIyB

ELLICSR cooking class : https://www.ellicsr.ca



@AICR infographic Making Time for Physical Activity: https://t.co/vNdlXhC42t

Rehab care plan via @livestrong https://t.co/tjpOnVDgVc

Dana Farber programs: https://t.co/WsRhJWRgIJ

US news and world report - exercise new RX for cancer pts https://t.co/KJ36gLRO6K

ACS Certified Cancer Exercise Trainer certification: https://t.co/qr44wEcOVk

ACS recommendations https://t.co/ucAjwIWChG

LIVESTRONG at the Y: https://t.co/okhxE7OqIe

@CancerSupportCm exercise classes

Exercising During Cancer Treatment--NCCN resources https://t.co/F1VkQNwycw

Physical Activity and the Cancer Patient--ACS resource https://t.co/XAIEEvLakj

Journal article : Physical activity and gynecologic cancer prevention https://t.co/Sw1N6kyPFX

Evidence based exercise program via @active_match  https://t.co/rkob5ZTpxO

Friday, November 6, 2015

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 )



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




Wednesday, October 14, 2015

Oct 14,2015 Open Mic Chat

This Open Mic chat focused on topics of interest to our participants. It was great to see our regulars and some new faces. It was a lively hour with 35 participants and 406 tweets in the hour. You may find the transcript here and additional analytics here.

The initial question was about returning to work.
Advice included recruiting students to help, drink lots of water, take breaks, eat high energy snacks such as nuts, raisins and to take a nap when she got home.

Then a good source on immuno-oncology was shared along with some comments on Lynch Syndrome.


The discussion then turned to IP chemotherapy for ovarian cancer. Studies show IP chemotherapy provides an improved overall survival compared to IV chemotherapy.


The recent report on the safety of Hormone Replacement Therapy for epithelial ovarian cancer survivors was shared and discussed.


Next the topic of annual pelvic exams and a possible U.S. Preventive Services Task Force recommendation was brought up.



We also discussed screening, family history, gyn awareness month activities, a timeline chart of long-term side effects post-chemo & radiation, risk of ovarian cancer in young women, surgical menopause and which supplements are recommended after BSO(bilateral salpingo-oophorectomy). 

 A link to a Brief survey for Cancer Survivors: How do you prefer to receive test results?buff.ly/1VTe1tm was also shared.

Remember you can continue our conversation on Smart Patients (https://www.smartpatients.com/gyncsm)

We look forward to seeing you again next month on November 11, 2015 at 9pmE/8pmC/6pmP as we talk about Exercise and Nutrition. We are lining up some guests to share their expertise so the hour should be filled with helpful information. See you then!

Dee
Co-Moderator

Resources

IKCC website 10forio.com Understanding Immuno-oncology for Kidney Cancer

The Underutilization of Intraperitoneal Chemotherapy for #OvarianCancer medscape.com/viewarticle/85…

Adjuvant Hormonal Therapy Is Safe in Epithelial Ovarian Cancer cancertherapyadvisor.com/gynecologic-ca…

Do Women Need an Annual Pelvic Exam pbs.org/newshour/rundo…

 Book: 100 Questions & Answers About Ovarian Cancer by @drdonsdizon @womenofteal  jblearning.com/catalog/978128…

@NCICancerStats #OvarianCancer fact sheet: go.usa.gov/yUpP

What’s an Ashkenazi woman to do? Jewish Telegraphic Agency jta.org/2015/10/14/lif…

Friday, October 9, 2015

Open Mic - October 14, 2015 Chat


This month we are opening the discussion to topics our participants want to discuss.

What topics do you want to discuss?

What did you do in September to raise awareness or funds for gynecologic cancer research?
What it is like taking part in a clinical trial?
Quality of Life (QOL) issues?
The latest research on HRT and ovarian cancer?
Beta Blockers and ovarian cancer?
Why your son should get an HPV vaccine?
Has the pink ribbon gone too far?

Join us at 9pmET | 8pmCT | 6pmPT and bring your thoughts, questions and comments. See you on the 14th.


Dee
Co-Founder #gyncsm Chat



Tuesday, September 29, 2015

Hereditary Breast and Ovarian Cancer Week


[posted updated 9/2016]

We as a community have chatted about gynecologic cancer risks, the genetics of cancer (Genetics and Personalized Medicine) and most recently held a chat on Genetic Counselors and Understanding Gyn Cancer Risk. But this week gives us the opportunity to share additional resources and information on hereditary ovarian and breast cancers.

About 15% of the ovarian cancers diagnosed are due to germline (inherited and passed on to offspring) mutations in the BRCA1 and BRCA2 genes. Having these mutations increases the risk of ovarian cancer by 15-50%. “Nearly one-third of women with hereditary ovarian carcinoma have no close relatives with cancer, and 35% of women with hereditary ovarian carcinoma are older than 60 years at diagnosis”(NCI). 

The Society of Gynecologic Oncology released a Clinical Practice statement in 2014 stating that all women diagnosed with ovarian, tubal and primary peritoneal cancer regardless of age or family history should receive counseling and be offered a genetic test. (https://www.sgo.org/clinical-practice/guidelines/genetic-testing-for-ovarian-cancer/)

FORCE (Facing Our Risk of Cancer Empowered) has played a crucial role in raising awareness, providing information and supporting research into hereditary breast and ovarian cancers. "The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease."

We hope you find these resources helpful. 


High Risk / Previvor Resources:

BRCA Mutation
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
Bright Pink
www.bebrightpink.org
FORCE (Facing Our Risk of Cancer Empowered)
http://www.facingourrisk.org/
Sharsheret
http://www.sharsheret.org/
Lynch Syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Cowden Syndrome
http://www.cancer.net/cancer-types/cowden-syndrome


Genetics: 
National Society of Genetics Counselors http://nsgc.org/
Find a Counselor Tool: http://nsgc.org/p/cm/ld/fid=164


Dee
#gyncsm Co-Founder 

Wednesday, September 9, 2015

Gyn Cancer Awareness Month - Spotlight Uterine and Endometrial Cancers September 2015 Chat



We celebrated our Second Anniversary as a community and chat this evening. We were happy to see some familiar faces as well as a few new participants.

This month we discussed Gyn Cancer Awareness Month and we also spotlighted Uterine and Endometrial cancers. We were so pleased to have Lynne Braden, uterine cancer survivor and #GynCAN founder tweeting as @GynCAN join us as well as our own Drs. Boulay, Dizon, Markham and Becker-Schutte.


If you missed this lively chat you may read the transcript here. We had 48 participants and 1,494,578 impressions with 614 tweets in the hour. Analytics may be found here.


Our topic questions and a few responses:



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?




Be sure to scroll down for our list of resources shared during the chat. 

Remember you may continue this month's discussion on Smart Patients. (https://www.smartpatients.com/gyncsm

We hope you can join us on Wednesday, October 14, 2015 at 9pmET Topic: Open Mic - Bring your questions/ thoughts. We look forward to seeing you then. 

Dee
#gyncsm Co-Founder


Resources 


Ovarian Cancer Screening http://t.co/jzRJuPWQJx


GYN cancer symptoms via @CDCgov http://t.co/0xRGEPjWMj

@FoundationWomen cancer fact sheet on heredity and Gyn Cancers http://t.co/2DMzuDjcSl

PSA created by @drdonsdizon and @mghcancercenter  
https://audioboom.com/boos/3555368-ovarian-cancer-awareness-month

Nobody Has Cancer Blog: http://www.nobodyhasovariancancer.blogspot.com/

Are You at Risk for Uterine or Endometrial Cancer @GYNCancer http://t.co/4boVMlfzIL

Risk Factor Chart http://www.gyncan.com/p/know-your-risk-factors.html

Peach Outreach http://peachoutreach.com/

SGO: Uterine Cancer: Symptoms | SGO https://t.co/IsdqFRzuLW

Medscape Article ( free to join)  In Endometrial Cancer, Lymphadenectomy Down Since 2007
http://www.medscape.com/viewarticle/850658

@theNCI : uterine overview http://t.co/mJhfJIMHTd  treatment info: http://t.co/uDjQ65QedI

National Race to End Women's Cancer http://www.endwomenscancer.org/faf/home/default.asp?ievent=1131900

#gyncsm TIL: Today I Learned thoughts: http://t.co/eX9UYFlJGK