2022 IGCS Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure

The Advocacy Summit was held at the Javtis Center in New York, NY September 28, 2022 in conjunction with the IGCS Annual Global Meeting. The recurring themes throughout the summit included discussion around patient advocacy in cancer research and clinical trials, and survivorship care programs.

Recordings of the presentations are available below and publicly searchable on IGCS’ YouTube channel.

Clinical Trials: A Patient Perspective
Annie Ellis

Annie, a recurrent ovarian cancer survivor shares her experience participating in clinical trials and how it led to her becoming a research advocate, working with clinician-researchers and the patient community to dispel myths and reduce barriers for patients to participate in clinical trials. She brings extensive knowledge and insights raising thought-provoking questions about the design of clinical trials, advocating for change, diversity, and inclusion.

Decentralized Clinical Trials: How it Can Work and Q&A
Leslie Randall

Dr. Randall talks about how the decentralized design of clinical trials can bring the benefits of these studies to the people who need them and is a way for the research community to reduce barriers to participation. She answers questions from the audience.

Advocating for Clinical Trials & Research
Adrienne Moore

These powerful words from and endometrial cancer survivor with the Endometrial Cancer Action Network for African Americans outlines the lessons one advocate has learned in her journey transitioning from cancer patient to patient advocate. Adrienne provides guidance to survivors how to advocate for themselves and other patients calling for action and diverse representation in clinical trials.

Understanding the Evidence and Need for Survivorship
Abhishek Shankar, MD

Long-term survivors of gynecologic cancers have unique challenges that need to be addressed systematically by care givers. Dr. Shankar discusses the importance of quality-of-life, the need for development of survivorship care plans, and the disparities and inequalities in cancer survivorship care globally.

Quality of Life Concerns from a Patient Having Survived Uterine Cancer
Nefa-Tari Moore

Nefa-Tari shares her survivorship story and how she became involved with SHARE Cancer Support. She shares that her diagnoses of lynch syndrome and recurrent cancer diagnoses means that she’ll be under surveillance throughout her life but she’s found ways to look beyond the disease finding happiness and support.

How to Build a Cancer Survivorship Program
Anne Mellon, RN

Anne shares her experiences and practical guidance in setting up a nurse-led gyn cancer survivorship program at her institution. She explains the challenges, successes, principles of care, and different options for survivorship care models.

Proven Interventions for Survivorship
Noriko Fujiwara, MS, RN, CRN-BCTM, OCNS, CCRP

Noriko provides guidance for patients about how to improve communication with their doctors and nurses reminding them that their voice and point of view matters. She explains that it is important to develop a relationship between the patient and healthcare team and the patients can download a Cancer Survivorship Checklist from NCCS to bring to their appointments and work with their healthcare team to collaborate to create a care plan that will work for them.

Creating an Integrative Care Center for Patients, Caregivers, and Families in Italy
Nicoletta Cerana

Nicoletta discusses the benefits of integrative care exemplified by the ACTO group in Italy. She explains that integrative cancer therapy considers the patient’s quality of life from a multidisciplinary approach using a variety of techniques and disciplines such as nutrition, psychology, sexology, mindfulness and more.

The Every Woman Study in LMIC Regions: IGCS and World Ovarian Cancer Coalition (WOCC)
Clara MacKay and Phaedra Charlton

The World Ovarian Cancer Coalition and the International Gynecologic Cancer Society are Strategic Advocacy Partners. In this presentation, Clara (CEO) and Phaedra (Director of Communications and Marketing) talk about the work of the organization including The Every Woman Study Low- and Middle-Income Edition — a global effort to collect data about the experiences of women with ovarian cancer with the goal to influence national and global policy to improve access to care and outcomes.

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