Wednesday, July 12, 2017

What's on your Mind? #gyncsm Open Mic Night -July 12, 2017

We didn't have a set series of topic questions for this month's chat but rather allowed our participants to share what was on their minds. We had nineteen participants and over 1.4M impressions. You may find more analytics from Symplur here.

The hour's discussion revolved around these main areas:

Emotional support of women after treatment
  • I'm struggling in post treatment life. Unknowns, grief, plus effects from chemo, rads. :/
  • Post-treatment is really tough for so many people. It's tough to go from the intensity of treatment to the uncertainty of after. 
A petition to make July Sarcoma Awareness Month which led to a discussion of - What is sarcoma? Which are gynecologic?

  • Via @suziesiegel Sarcoma is a cancer of connective tissues. The main types of gyn sarcoma are leiomyosarcoma ,low- & high-grade endometrial stromal sarcoma, & undifferentiated uterine sarcoma. Some include carcinosarcoma
  • Risk factors include exposure to radiation & use of Tamoxifen, plus genetic issues such as Li-Fraumeni Syndrome

Educating the public about the importance of HPV vaccination
  • Caleb's Feet Foundation brings information about cervical cancer and the HPV vaccination to the community. 
  • studies show pediatricians have a huge influence on whether kids get vaccinated - parents do listen to doc rec
  • good to focus on doc's and then community influencers - churches, centers
  • The @GlobalGenes site has some amazing free toolkits for health advocates. Can also check out blogs from @JBBC re: health marketing 
  • HPV vaccination could reduce global deaths from #cervicalcancer by as much as two-thirds
Support for women cancer researchers 
  • I really want to (1 day) discuss the lack of funding 4 female researchers, tasked w/ post BrCa Dx research
  • Issues affecting women's health still does receive equitable share in research dollars. It's time that changes
  • Awarding rates 4 female applicants (14.9%) are systematically lower than those for male applicants (17.7%) 
The science behind the connection between genetic mutations (other than BRCA) and how they may raise the risk of  Breast, Ovarian Color Cancer 
  • I'm in a FB group for CHEK2 and many previvors reporting getting ovaries out though science isn't there yet on that.
  • CHEK2 is the name of a gene...when there is an inherited change (mutation) in CHEK2 = some increased risk for specific cancers
  • Risks to removing ovaries in these young women-->early menopause w/o known cancer risk reduction benefit

You may find the complete chat transcript here.

Please scroll down for Resources mentioned during the chat.

Remember you can always join our discussion on the Smart Patients Platform. ( )

Be sure to join us next month on Wednesday August 9, 2017 at 9pm ET | 8pmCT | 6pmPT  as we discuss "You never heard of Primary Peritoneal Cancer or GTDisease?".

Remember to tweet things of interest to our community by using the #gyncsm hashtag.

See you in August!

#gyncsm Co-founder


Petition to make July Sarcoma Awareness Month

Calebs Feet Foundation

Magenta Study Genetic testing study at MD Anderson

Sex Bias in Surgical Research

@nccn guidelines for "Hereditary Colorectal Cancer"

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