SGO Annual Mtg 2023 Highlights - Participation

I returned recently from an exciting and informative SGO Annual Meeting. Over the next few days I will highlight research results that I found most impactful to patients, survivors and caregivers.  This blog post will be on participation and will cover how other advocates and I  participated in the meeting. 

The Foundation for Women's Cancer held a Patient Education Forum on Friday. They presented information on ovarian, endometrial, cervical rare gynecologic cancers as well as information on exercise, advocacy  and other topics. Some survivors shared the story of diagnosis and treatment. The room was filled with survivors, caregivers and advocates as well as organizations that support women with gyn cancers. 

Later that evening advocates were invited to the Foundation for Women's Cancer reception. Advocates were able to meet each other as well as gyn oncs, researchers and leadership of the Foundation. 

@SGO #sgomtgs #patientspurposeporgress ⁦@GYNCancer⁩ reception with ⁦@womenofteal⁩ ⁦@AdrienneEcana⁩ ⁦@Stigetta⁩ Ready for the annual meeting! pic.twitter.com/oUBeHE4ebJ

— DineoKhabeleMD (@DKhabeleMD) March 24, 2023

Saturday was a busy day. As a member of the SGO Communication Committee, I had the opportunity to participate in the  Education Forum Media Readiness session. I was part of a role play session on how to use different techniques such as pivot, personalize, deflect,acknowledge, and broaden when being interviewed by the media. As an advocate I am asked to comment on new treatments or breaking news and the tips shared during the session were helpful to me.

Patient Advocate @womenofteal on the panel! @SGO 2023 Annual Meeting! Communications C’tee Education Forum on media readiness #SGOmtg #PatientsPurposeProgress #GYNcsm pic.twitter.com/412oLo7Nb1

— Annie Ellis (@Stigetta) March 25, 2023

During the very next session Annie Ellis, survivor and advocate, presented Long-term survivors speak: perspectives on progress, during a Scientific Plenary Session. Annie and I  held a roundtable Zoom meeting and also surveyed long term ovarian cancer survivors about progress,  patient needs, and what ovarian cancer survivors want their doctor to know. It was so exciting to see Annie present and to hear the applause and comments that followed!

 

 

If you have questions about our abstract, don't hesitate to reach out to me for further details. 

On Sunday, the  Patient Education Committee held a advocate poster walk in which advocates were able view posters and to listen and ask questions of the poster authors. We were also given the opportunity to vote for the  Patient Advocate Hope Award winner. It was wonderful to see so many early career clinicians and researchers present their research. 

 

 I'll continue my highlight blog posts over the next few days.

Dee

Every Day is a Blessing

SGO Meeting Preparations

 

 

Thanks to support from my Cancer Center, I am heading south to Tampa for the SGO Annual Meeting on Friday. The theme of the meeting is Patients | Purpose | Progress. I'm so excited to be meet up with other survivors/advocates and to learn from the researchers who are making advances to improve the care of patients diagnosed with a gynecologic cancer. 

When I arrive on Friday, barring any airline delays, I hope to attend at least part of the Patients and Advocates Education Forum and Luncheon. I have attended them in the past and have always found them beneficial. This is the first once to be held in person since Covid began. 

Saturday, March 25th, will be an especially busy day for me. 

As a member of the SGO Communications Committee I will be part of a presentation on Saturday ( 2:45pm Ballroom A) . This Education Forum, Ready for Primetime: Media Readiness will present strategies of how to best respond and state your position when asked questions by the media.  

Following the Forum, the Scientific Plenary II session (East Hall, 4pm) will take place.  Survivor/advocate, Annie Ellis, will be presenting Long-term survivors speak: patient perspectives on progress, an abstract she and I co-authored. I will share more about the abstract after the meeting.

There are a number of other sessions I am looking forward to attending and am busy working on the app to set up my schedule and work in some time to meet up with some of my gyn onc friends. 

On Twitter,  be sure to follow the hashtags #SGOmtg and #gyncsm for news from the meeting. 

I'll be posting highlights here once the meeting concludes.

Dee

Every Day is a Blessing! 

Powell-Drescher Foundation - Ovarian Cancer Research, Advocacy and Education

A few weeks ago I had the pleasure of having a zoom call with Sachia Powell. Sachia is an ovarian cancer survivor, advocate and founder of the the Powell-Drescher Foundation www.powelldrescher.org. We discussed the foundation she founded with Dr Drescher and a number of advocacy and education ideas. Here are two opportunities coming up for advocates.

The Powell-Drescher Foundation is hosting a free Zoom presentation on November 20, 2022, to provide information about research advocacy.  During the Zoom presentation, ovarian cancer researcher Dr. Kristin Anderson will provide information about how to navigate a research conference, as well as details about the AACR’s Scientist-Survivor Program (SSP).  Ovarian cancer survivor/research advocate Annie Ellis will share her experience with the SSP as well as her insights as an experienced research advocate.   To apply to attend the presentation click here. 

 

Along with that education program the organization will provide details about their new program an opportunity for an advocate to attend the American Association for Cancer Research (AACR) Annual Conference in Orlando in April 2023.To learn more or apply click here. The deadline is December 31,2022. 

You can read more about the organization on their website:  www.powelldrescher.org or follow  them at  @powelldrescher on Instagram  and Facebook, and @powerovarian on Twitter. 

 

 

Dee

 

Every Day is a Blessing! 

 

Our Voices Were Heard at The SGO Annual Meeting

As you know I was not able to attend the SGO Annual meeting in person but followed the research news and announcements on Twitter. Annie Ellis, a friend and fellow ovarian cancer survivor did attend the meeting. In my two previous posts on the meeting, I included a number of her in-person tweets. 

But Annie was more than a research advocate in attendance, she was a co-author of the presentation  "Survivors Acceptance of Treatment Side Effects Evolves as Goals of Care Change over the Cancer Continuum" presented by Dr Melissa Frey, NYU Langone Medical Center.

There are a number of meaningful endpoints in clinical trials - overall survival (OS), Progression Free Survival (PS), patient reported outcomes (PRO) and quality of life (QOL). In September 2015, an FDA workshop was held on alternative endpoints. The study presented at SGO by Dr Frey brought focus on the patients perspective on these endpoints.

Melissa Frey MD, Annie Ellis, Laura Koontz PhD, Savannah Shyne MPH, Jing-Yi Chern MD , Jessica Lee MD and Stephanie Blank MD undertook this study to determine whether survivors’ acceptance of treatment side effects changes over the course of living with the disease (NED, recurrence). To do this, Annie Ellis developed a survey and reached out to the ovarian, primary peritoneal and fallopian tube cancer communities for responses to questions related to treatment side effects and patient goals. Over three hundred women participated in the survey. I was one of those 300 women.

45% of the women had a treatment goal of overall survival
41% of the women had a treatment goal of quality of life
12% of the women had a treatment goal of progression free survival
2% of the women did not respond to the question

In response to the question "What is most meaningful to you"  most women chose either overall survival or ability to engage in daily activities.

The overall response to the questions "When asked what they expected from treatment" appears below.

When you separate out the responses of women who have had a recurrence 16% expected a cure and 53% remission. These findings are significant.

Participants were then asked what side effects they would tolerate to get a cure, remission or stable disease. This slide summarizes those responses.

Looking at just those women who have recurrent disease ( n-162) whose expectation is a cure their responses to what side effects they would accept are presented on this slide.

In conclusion:

I look forward to the development of the survivors' decision tool.

Did you take part in the survey? Were the results what you would have expected?
If you didn't participate, which side effects would you tolerate to get a cure, remission or stable disease?

Thank you Annie and all the co-authors for asking women diagnosed with ovarian cancer to share their expectations with the gynecologic oncology cancer community, for reporting those results to the community and for allowing me to share parts of the presentation with my readers.


Dee
Every Day is a Blessing! Blessed to have engaged ovarian cancer research advocates like Annie Ellis working with researchers dedicated to understanding the needs and expectations of survivors.