A Radio Interview !

 

Alka Agrawal and I met through the Rutgers Cancer Institute of New Jersey's Cancer Community Action Board. Alka is the general manager of EBC Radio 1170 radio located in Monmouth Junction, NJ.

EBC Radio is the largest South Asian radio station in the United States through radio,  app and website. They have over 500,000 listeners.

Alka invited me to tell her listeners about my experience with ovarian cancer and the importance of raising awareness of ovarian cancers and all gynecologic cancers during September, Gynecologic Cancer Awareness month. I was a bit nervous at first having never been on the radio before but Alka made me feel comfortable.  I shared how I was diagnosed, considered a clinical trial and my cancer treatments. I also shared my involvement in cancer advocacy.  I spoke mainly about ovarian cancer but did talk about the five main gynecologic cancers - ovarian, uterine/endometrial, cervical,vaginal and vulvar.

I was honored to share my story with the South Asian community in NJ and across the country through EBC Radio.

If you click the arrow below you may listen to a clip from my interview. Correction : The American Cancer Society estimates that ~ 19,710 women will be diagnosed with ovarian cancer the US in 2023. They also estimate that ~650 women in NJ will be diagnosed with the disease. That would be 3% not 1/3.

Dee

Every Day is a Blessing!

Ten Years as a Community and Chat

On Wednesday, September 13th the #gyncsm Community celebrated it's Tenth Anniversary as a community and Chat.

It seems like yesterday when after taking part in a #bcsm chat on Recurrence I posted this to Twitter.  

 

Shortly after, Christina, a ovarian cancer advocate in Texas and I, an ovarian cancer survivor in New Jersey joined together to establish an online community. At first we were going to concentrate on ovarian cancer only but decided that our community should be open to all women diagnosed with gynecologic cancers. So the #gyncsm ( gyn cancer social media) community was born. 

We wanted to insure that the information and support we provided was accurate. We reached out to gynecologic oncologists,Dr D Dizon, Dr R Boulay, and Dr MJ Markham who agreed to be our first  Health Care Moderators. Knowing that we might chat about mental health issues or that some topics might cause emotional distress, we invited psychologist, Ann Becker-Schutte, Ph.D. to join us. As their practices and professional activities increased for our original HC Moderators, we were happy to have Sarah M. Temkin, MD and Shannon Westin, MD, MPH take the place of our original moderators. From the very first chat we have had the support of Cervivor, SGO and Dr Matthew Katz, who helped us draft our Tweet Disclaimer.

Our community has chatted about the risks and treatments of all the gyn cancer types from the most common to the most rare. We discussed advocacy, parenting with cancer, working while having cancer, the role of the caregiver, communicating with your health care team, genetics, personalized medicine, survivorship, clinical trials and many chats on emotional health. We've had guests present on health equity, how to find a clinical trial, how to become a research advocate and so many more. Since 2014, we have highlighted research results presented at the ASCO and SGO annual meetings. And yes, we also spoke about recurrence, the topic that sparked Christina's and my initial Twitter exchange.

Our logo as well as this blog has evolved over the years with our latest version being launched at our 100th Chat in March 2023. 

 

 

Through the years our community has been involved in a number of research efforts. We have been  co-authors on several published research articles covering the needs of women diagnosed with ovarian cancer, caregiver support services, patient needs when considering a PARP inhibitor as well as a number of papers on social media, hashtags and cancer communities.  You may find links to the article on our blog's Publications page.

If you have been a part of the #gyncsm community at any point through the years we would love our feedback by answering these questions:

Question 1 : Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats?

Feel free to respond in the comment box below or on Twitter https://twitter.com/gyncsm/status/1702737477868417061

It has truly been a wonderful experience working with Christina and all our gyn oncs and supporters. This community has allowed my work as an advocate to grow far greater than I ever imagined. Thanks everyone. 

Dee

Every Day is a Blessing!