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

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

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?

A1: It give us physical strength & successes which can elevate mood, increase mental strength and positivity. #gyncsm

— Dana-Farber (@DanaFarber) November 12, 2015

A1. A number of studies show a positive correlation btwn exercise & mood improvement & recurrence risk reduction. #gyncsm

— Nancy Campbell (@exercise_cancer) November 12, 2015

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

A2: Good to create a rehab care plan with your care team. Here's a good place to start: https://t.co/tjpOnVDgVc #gyncsm

— LIVESTRONG (@livestrong) November 12, 2015

T2: During immediate post op time, light exercise is great--just shy away from heavy lifting while you heal! #gyncsm

— Elizabeth Dickson (@edicksonMD) November 12, 2015

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

A3: We offer a free program at 450+ @YMCA's across the US to anyone post-treatment: LIVESTRONG at the YMCA https://t.co/okhxE7OqIe. #gyncsm

— LIVESTRONG (@livestrong) November 12, 2015

A3: @ACSM has a Certified Cancer Exercise Trainer certification: https://t.co/qr44wEcOVk #gyncsm

— Dana-Farber (@DanaFarber) November 12, 2015

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

A4: #gyncsm Reducing processed refined #sugars and frequent consumption is best recommendation Keep some #fruit! #nutrition

— Stacy Kennedy MPH RD (@stacykennedyrd) November 12, 2015

A4: Eating #Plantbased diet with protein and #hydration plus #exercise all help blood sugar control #gyncsm

— Stacy Kennedy MPH RD (@stacykennedyrd) November 12, 2015

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

A5: For GYN cancers there are specific nutrition recommendations depending on the type of cancer & current tx or related symptoms. #gyncsm

— Dana-Farber (@DanaFarber) November 12, 2015

A5: Obesity raises risk for endometrial cancer significantly. Manage your weight through healthy eating/exercise to reduce risk. #gyncsm

— Rick Boulay,MD (@journeycancer) November 12, 2015

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

A6: Nutrition & healthy eating are absolutely about finding balance & eating patterns that can be replicated everyday. #gyncsm

— Dana-Farber (@DanaFarber) November 12, 2015

A6: Think about it this way - you finally have a good reason to try a whole host of new and exciting foods. Explore new things. #gyncsm

— LIVESTRONG (@livestrong) November 12, 2015

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 

AICR : http://www.aicr.org/reduce-your-cancer-risk/diet/

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

UPenn: http://www.oncolink.org/coping/article.cfm?c=464&aid=1468&id=959

Nutrition in Gyn Cancer http://link.springer.com/article/10.1007/s13669-015-0130-2#/page-1

EXERCISE

Iram's story: https://t.co/jlFlU23n7r

@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

GENERAL

Cancer Harbors - http://www.sunspiritwellnessservices.com/cancer-harbors/

"Heal Well Guide" https://t.co/PIFFRTGCeU

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

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.

I'm going back to work for the first time in 6 weeks on Monday. Worried about energy/endurance. Advice? #gyncsm

— Elizabeth Anderson (@MathTeacherEA) October 15, 2015

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.

Want "basics on up" re immuno-oncology, new drugs Opdivo and Keytruda, trials? Try new the new IKCC website http://t.co/Wkqt2YIXrr #gyncsm

— Robin Martinez (@RobinSmrtPtient) October 15, 2015

@RobinSmrtPtient Very true - tumors w MSI (microsatellite instability) respond to PD-1 inhibitors. MSI is common in #Lynch Syndrome #gyncsm

— Shannon Westin (@ShannonWestin) October 15, 2015

Lynch syndrome information and resources via @shewithlynch http://t.co/DyrCslkfGf She also blogs for @cure_magazine #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

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

The Underutilization of Intraperitoneal Chemotherapy for #OvarianCancer : Why? #gyncsm @Medscape http://t.co/nct6PzLDBg

— Lisa M Guzzardi, RN (@LguzzardiM) October 15, 2015

@LguzzardiM @btrfly12 Centers need to get the training to feel comfortable/competent/safe giving the IP treatment #gyncsm

— Shannon Westin (@ShannonWestin) October 15, 2015

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

Adjuvant Hormonal Therapy Is Safe in Epithelial #OvarianCancer #gyncsm Via @CancerTherAdvsr http://t.co/VtoZMbp4Zk

— Lisa M Guzzardi, RN (@LguzzardiM) October 15, 2015

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

The debate on whether we need annual pelvic exams is in the news again and gov report looming http://t.co/IHLM2Xg2l9 - thoughts? #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

ACP says no need for annual if no symptoms, history. ACOG came back with caveats, feels up to pt and dr to decide. #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

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…

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

Hereditary Breast and Ovarian Cancer Week

[posted updated 9/2016, 9/2017, 9/2018]

The #gyncsm community has chatted about gynecologic cancer risks, the genetics of cancer (Genetics and Personalized Medicine), Genetic Counselors and Understanding Gyn Cancer Risk and Hereditary vs Somatic Mutations. HBOC week gives us another opportunity to share 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/)

F.O.R.C.E. (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. 


Hereditary Cancer Resources:
Bright Pink
www.bebrightpink.org
F.O.R.C.E. (Facing Our Risk of Cancer Empowered)
http://www.facingourrisk.org/
Sharsheret
http://www.sharsheret.org/
BRCA Mutation
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
Lynch syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Cowden syndrome
http://www.cancer.net/cancer-types/cowden-syndrome
Li-Fraumeni syndrome
https://www.lfsassociation.org/what-is-lfs/
Peutz-Jeghers syndrome
https://www.cancer.net/cancer-types/peutz-jeghers-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