April 13, 2016 Chat : Re-envisioning Ovarian Cancer Survivorship

When Christina and I were talking about establishing the #gyncsm community and chat in 2013, we decided our inaugural chat would be in September (Gynecologic Cancer Awareness Month) and that our focus would be Ovarian Cancer. Since then we have covered many topics of interest to those diagnosed with gynecologic cancers - precision medicine, emotional issues, side effects, risks, hereditary links, nutrition, exercise and sexuality - just to name a few. We have also covered specific gynecologic cancers - vulvar, cervical, fallopian tube and vaginal. It has been over 2 years since we focused our chat topic discussion on ovarian cancer, where each of our personal advocacy work began. When Massachusetts General Hospital and Harvard Medical School’s Dr Don Dizon and Dr Teresa Hagan approached us a few months ago about joining us for a chat on re-envisioning ovarian cancer “survivorship", we jumped at the opportunity.

What is it like to be... in the first few months of a new diagnosis of ovarian cancer? to undergo treatment? to have “No Evidence of Disease" (NED)? to hear you have recurred? These experiences must be different at every point, and for every woman, and in this chat we hope to hear from women at all stages of the experience.

A number of our regular chat participants are researchers, gynecologic oncologists, medical oncologists and radiation oncologists. This is a perfect opportunity for women’s voices to be heard and to share needs, concerns and helpful tips.

Our discussion on April 13, 2016 at 9pmET (8pmCT/6pmPT) will include these questions.

T1a: What does survivorship mean to you? What is it to be an ovarian cancer survivor?

T1b: Do you use the term survivor? If not, what term do you prefer?

T2: What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?

T3: How was the topic of recurrence addressed with you? Did you find it helpful or not helpful at the time - and now looking back?

T4a: What are your needs and concerns now? (After recurrence or As you live past diagnosis and initial treatment of ovarian cancer)

T4b: What issues - physical, emotional or other - currently give you the most difficulty?

T5: What actions have you taken in living past your ovarian cancer diagnosis and treatment? Were you given a Survivorship Care Plan?

T6: Do you personally research new #ovca treatments and info online? Do you follow scientific meetings like SGO and ASCO?

Here are some resources you may view prior to the chat:

American Cancer Society: What Will Happen After Treatment for Ovarian Cancer?http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-after-follow-up

Cancer.Net (ASCO): Ovarian Cancer: Follow-Up Care
http://www.cancer.net/cancer-types/ovarian-cancer/follow-care

Associations between physical Activity and Quality of Life in Ovarian Cancer Survivors
http://www.sciencedirect.com/science/article/pii/S0090825807002508 


We look forward to having you join us on April 13th.

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Dee
Co-Moderator #gyncsm chat