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 

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?

T1: That far more suffer from it that we realize. Talking about anything GYN in public is still so hard for many people. #gyncsm

— GynCAN - #GynCAN (@GynCAN) September 10, 2015

#gyncsm T1 we try to make women aware of these symptoms pic.twitter.com/JrJcItACoV

— Cervical Screening (@CervicalScreen1) September 10, 2015

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

T2: Working with @WIOvarianCancer @Aurora_Health to spread the word about ovarian cancer in our community #gyncsm

— Elizabeth Dickson (@edicksonMD) September 10, 2015

T2 wearing apparel and jewelry identifying uterine cancer, sharing my personal experiences via fb and instagram via quotes and such #gyncsm

— Gail Rose (@rose_mzrozee) September 10, 2015

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

T3: We need to think of gyn symptoms like we think of a breast lump: Odds are it's nothing, but MAKE SURE IT'S NOT CANCER. #gyncsm

— Robin Martinez (@RobinSmrtPtient) September 10, 2015

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

T4 Almost all uterine and endometrial cancer is treated surgically. WE use minimally invasive approach (robots) to speed recovery #gyncsm

— Rick Boulay,MD (@journeycancer) September 10, 2015

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

T5 witnessing ovca pt experiences as an oncology RN made me want to do more, not just give chemo. QoL needed!!! #gyncsm

— Alene Nitzky Ph.D RN (@AleneGoneBad) September 10, 2015

T5: Because survivor sisters are now my friends! The need for awareness & increased funding is so great. #gyncsm

— GynCAN - #GynCAN (@GynCAN) September 10, 2015

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