Wednesday, August 26, 2015

If Only I Knew - September is Gynecologic Cancer Awareness Month

Ten years ago I didn’t know very much about the color teal or ovarian cancer. I did go for an annual Pap Test but that was the extent of my knowledge of gynecologic cancers. Since my sister had been diagnosed with breast cancer at the age of 42, I knew much more about pink and breast cancer. 

Then I was diagnosed with stage III ovarian cancer. At first I was just too busy getting well to even think about the fact that I could do something about being clueless about gynecologic cancers. But I finished chemotherapy, my hair grew in and I felt better. In 2006 the consensus statement on ovarian cancer symptoms was published. Later that year when my gynecologic oncologist suggested I contact a local ovarian cancer foundation and get involved in raising awareness, I was finally ready. That September was the first time I told my story. I talked about the symptoms of ovarian cancer with other women and handed out symptom cards. It was also in September of that year that I joined with another family from my town to hang teal ribbons on trees to raise awareness of ovarian cancer.

Awareness of gynecologic cancers and ovarian cancer in particular has increased in the past 10 years but we have more work to do. There are still women, family members and health care providers who need to be educated about the symptoms of gynecologic cancers, HPV, risk factors, and the need for research to better understand the diseases and to find cures. Awareness efforts reach their peak every September during Gynecologic Cancer Awareness Month (GCAM) . If you want to help raise awareness you can wear teal, paint your toes teal, hang ribbons, participate in walk/runs or chats and share symptoms via social media or the handy symptom cards offered by several awareness organizations. These are just a few of the ways you can get involved and spread the knowledge which all women need to know about gynecologic cancers.

Here are some online resources for GCAM that #gyncsm would like to share with you.
Gynecologic Cancer:

#gyncsm Chat – September 9, 2015 at 9pm EST Topic: Gyn Cancer Awareness Month with a Spotlight on Uterine/Endometrial Cancer (

Globethon to End Women’s Cancer – worldwide events

GynCan- Gynecologic Cancer Awareness Network -
Blogger/Social Media Challenge and Walk/Run 100 Miles in September

Foundation for Women’s Cancer, Awareness Month Role of Hereditary Cancer Fact Sheet :

Ovarian Cancer :

Ovarian Cancer National Alliance (OCNA)
#30Days of Teal
Check their Partner Member Page links to partner member websites and events.

National Ovarian Cancer Coalition (NOCC) - Check their website for local walks

Ovarian Cancer Research Fund (OCRF)
Upcoming event can be found here.

Wear Teal Day is Friday, September 4, 2015.

We would love to hear about the awareness activities you will be participating in during September. Please tell us in the comment section of this page or share it with us (@gyncsm) on twitter. 

Co-Founder and Co-Moderator #gyncsm community

Sunday, August 23, 2015

#LCSM chat 8/27 8pm ET: Let's get social... in our health?

Christina and I are pleased to be joining the #lcsm community to discuss "Getting Social with your Health"  on Thursday August 27, 2015 at 8pm ET. Below is the guest post Christina wrote about the chat for the #LCSM Chat Website. 

The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.

What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.

I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming the #gyncsm community for gynecologic cancers. The #LCSM community has a great focus on turning ideas into action, pushing for collaboration, and is not afraid to get technical.

Guiding our discussion for the Thursday, August 27th #LCSM Chat at 8 PM (Eastern Time) will be:

T1: What are the benefits to patients and loved ones in connecting and sharing on social media? Why do you participate?

T2: What are your tips for getting started in using healthcare social media to connect and learn about a condition?

T3: What are some considerations and cautions when it comes to getting social with your health?

T4: How do we bring more people into the important discussions happening in digital health communities like #LCSM?

The #LCSM community is vibrant and welcoming. It is the perfect setting to check out getting social with your health – no matter your health background. I hope you’ll join us for a great discussion. Dee and I are honored and excited to participate.

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat. You can also check out the #gyncsm community disclosure statement on participating in healthcare social media.

Christina Lizaso (@btrfly12)
Co-Founder and Co-Moderator #gyncsm community
Moderator #patientchat

Further Reading:

We hope you can join us!

Co-Founder and Co-Moderator #gyncsm Community

Wednesday, August 12, 2015

Dealing with Side Effects - August 12,2015 Chat

A wealth of information and support was shared during the night's chat on Dealing with the Short and Long Term Side Effects of Gynecologic Cancer Treatment. The lively chat included twenty-five participants including Dr. Matthew Katz, Dr. Anne Becker-Shutte and Dr. Elizabeth Dickson.
We had over 999,000 impressions with 15 tweets per participant.

Here are the questions that guided our chat and a sample of responses.
T1: Let’s start w/ surgery side effects...  Which affected you most? Which do patients say are most impactful? Tips to address?

T2: Now let's talk about chemo. What were your side effects? Which are common? How aware of side effects are patients before start?

T3: What are some of the side effects of radiation? Which did you experience? What are patients most concerned about?

T4: For targeted therapy (TT) - Oliparib, Avastin, etc. - what are the side effects? Different from chemo?

T5: What side effects persist? Have you talked to your provider about them? Other side effects we haven't covered so far?

T6: What impacts are you willing to deal with to get more effective treatment? Have we seen changes in how side effects are managed?

To read the complete transcript visit Symplur here.

Remember if you are a patient or caregiver you can join us and continue the conversation on the Smart Patients Platform at 

Our September chat will mark our 2nd anniversary as a health care chat and community on Twitter. We hope you can join us on Wednesday September 9 at 9pm EST . Our topic that night will be Gyn Cancer Awareness Month - Spotlight on Uterine/Endometrial Cancer. 

And as the song goes "See you in September..." .

#gyncsm co-moderator

Resources mentioned during the chat:

Insights Into Preferences for Psycho-Oncology Services in Women With GYN Cancer Following Distress Screening:

Hair Loss: Research with DigniCap presented at #ASCO15

Infographic from @NOCC_Illinois

How To Deal With Surgical Menopause? Helpful questions & answers

The #NCCN Patient Guidelines for Ovarian Cancer

Complementary and Alternative Medicine - National Cancer Institute

Side Effects of Radiation Therapy via ACS:

Radiation Therapy from the Foundation for Women's Cancer @GYNCancer

Specific cancer information from SGO Patients, Caregivers and Survivors | SGO

Overview page per side effect from @PRPCancerGuide and downloadable guide

Long-term side effect info from @cancerdotnet

Additional Resources on Side Effects:

Radiation oncology:  @RWJMS

Foundation for Women's Cancer 

Coping with Side Effects: