Season 4 Episode 6: Beyond the Pain: Anna's Journey with Endometriosis

Join us for a powerful and inspiring conversation with Dr. Marie-Lyne Alcaraz, a dedicated program manager, and Fiona Barvé, a patient partner at Cancer Research UK Cambridge Centre. Together, they share a firsthand look into how groundbreaking cancer research and personal resilience intertwine. In this episode, Fiona opens up about her journey, detailing how the Patient Partner Involvement (PPI) group became a vital support during her treatment and transformed her experience. Dr. Alcaraz provides insight into how patient perspectives are shaping the future of cancer care, highlighting the immense value of patient voices in research.Tune in to hear how partnerships like these are paving the way for more compassionate, innovative, and effective cancer treatment. 🌟🎙Resources:Cancer Research UK Cambridge Centre - https://www.cruk.cam.ac.uk/To inquire about joining the PPI group, please email [email protected] more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

In this episode, we continue exploring the impactful experiences of the seed2STEM program students. seed2STEM program offers paid internships that offer Indigenous youth hands-on opportunities in scientific research. We hear from Maddy, Alyssa and Madi as they share their journeys working in gynecologic cancer research labs. Whether you're interested in science or looking for inspiration, this episode highlights the power of opportunity and growth through mentorship and education. Shana George (the interviewer) - student at Huntsman lab Maddy Testa - student at Huntsman lab Alyssa Campbell - student at Brotto lab Madi Perreault - student at ________lab Resources:seed2STEM program website - https://icord.org/seed2STEM/ _For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:  Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiativeFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

Welcome to the first episode of Season 5! We kick off the new season by exploring the experiences of students from the seed2STEM program, the Summer Research Program for Indigenous Youth. It offers paid internships that offer Indigenous youth hands-on opportunities in scientific research. We hear from Shana, Caty and Catalina as they share their journeys working in gynecologic cancer research labs. Whether you're interested in science or looking for inspiration, this episode highlights the power of opportunity and growth through mentorship and education. Shana George - student at Huntsman lab Caty Janze - student at Hanley lab Catalina Claxton - student at Hanley lab Resources:seed2STEM program website -  https://icord.org/seed2STEM/ _For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:  Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiativeFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

🚀 A New Chapter Begins! Our newest episode is live! Join the conversation as we celebrate the past and look forward to the future with our new co-host, Anita Wright. As Stephanie will transition into her new role as a Knowledge Exchange Leader for Mental Health and Substance Use at Fraser Health, She'll be moving on from the GOSH podcast.  We want to extend our deepest gratitude to Stephanie for her incredible dedication, passion, and contributions to the podcast. Today, we want to take a moment to reflect on the journey of the GOSH podcast. We'll discuss some of the significant milestones we've reached and the impactful stories our guests have shared. Anita Wright is a 76-year-old cake artist from New Westminster. With more than 600 thousand followers on TikTok, Anita, known as 'TikTok Nana,' has captured hearts with her mesmerizing "acrylic piping art." Once a marketing manager, she found her artistry after retiring and starting her own event business in Toronto. Upon moving to Vancouver in 2017, she ventured into baking custom cakes and shared her creations online. In 2022, Anita received a stage four ovarian cancer diagnosis. She openly communicated this diagnosis to her followers and now uses her platform to document her ovarian cancer journey, aiming to increase awareness about this type of cancer. Mentioned Episodes:Season 2 Episode 7: A Chinese Perspective – Hereditary Cancers, Genetic Testing and Language Accessibility (一個華人對癌症遺傳基因檢測的體驗)Episode 8: On Cancer Survivorship, Sexual Health and MindfulnessSeason 2 Episode 8: A New Gynecologic Cancer Survivorship Clinic in BC---For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_ClusterInstagram – @gynecancerinitiativeFacebook – facebook.com/gynecancerinitiativeFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

From childhood memories to global aspirations, every plunge counts in the fight against ovarian cancer. Dive into our latest episode with Jim Shepard to learn more!#MakingWaves #GOSHpodcastBio: Meet Jim Shepard. The co-chairs of Plunge for the Cure. The Plunge for the Cure Foundation is a registered Canadian charity that was established to raise funds for drug and treatment development targeting ovarian cancer. Jim initiated the foundation motivated by a family member's diagnosis and the alarming five-year survival rate of under 40 percent.  The foundation's focal point is an annual event held on the last Sunday in May, where individuals and teams engage in fundraising and take part in celebrating the arrival of summer by plunging into the water. These funds are directed towards the world-renowned UBC/VGH research facilities in Vancouver.   The episode aims to spotlight ovarian cancer issues, sharing the inspiring stories and efforts of individuals like Jim Shepard. Their collective goal is to increase awareness and improve outcomes for ovarian cancer, making a meaningful impact in the ongoing fight against this challenging disease. Resources:Plunge for the Cure Foundation website - https://www.plungeforthecure.com/ _For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:  Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiativeFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

Delve into the complexities of endometriosis with Dr. Paul Young, a distinguished gynecologist and researcher. Gain insights into diagnosis, treatment, and ongoing research efforts in our latest podcast episode! #EndometriosisAwareness #PelvicHealth #MedicalResearchBio: Dr. Paul Yong (MD, PhD, FRCSC) is a distinguished Gynaecologist, directing the Research Program at the BC Women’s Centre for Pelvic Pain & Endometriosis. Dr. Young’s clinical focus lies in pelvic pain, with a particular expertise in endometriosis, painful periods, sexual pain, and associated bladder, bowel, and musculoskeletal issues. Dr. Yong's commitment extends to the academic realm, where he serves as an Assistant Professor in the UBC Department of Obstetrics & Gynaecology. His translational research endeavors include spearheading bio-banking initiatives for endometriosis, conducting gene sequencing studies to unravel underlying mechanisms, and investigating nerve formation in the pelvis as a potential source of pain. Beyond his clinical and research roles, Dr. Yong actively contributes to medical education, imparting his knowledge and experience to the next generation of healthcare professionals. His multifaceted approach underscores a holistic commitment to advancing the understanding and treatment of pelvic pain and endometriosis.Resources:Endometriosis and Pelvic Pain Laboratory: https://endopain.endometriosis.org/_For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:  Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

 Delve into the world of endometriosis education with Dr. Natasha Orr as she shares insights on research, advocacy, and patient-centered care. #EndometriosisAwareness #HealthcareEmpowerment Meet Natasha Orr, a researcher at the University of British Columbia (UBC) with a passion for understanding and helping people with endometriosis and chronic pelvic pain. Natasha finished her PhD in 2022, where she studied central sensitization and endometriosis associated pain. During her PhD, she spearheaded the development of endometriosis educational videos and a workshop for people with lived experience of endometriosis and their loved ones. Now, as a Postdoctoral Research Fellow, her work centers on developing online resources about endometriosis and chronic pelvic pain for healthcare providers in training using patient-oriented research and user-centered design.  Her collaborative approach involves working with patient partners throughout each step of her project, making her research not only academically significant but also accessible and engaging for the public. Natasha's commitment to reducing the delay in endometriosis care and improving healthcare providers' understanding of endometriosis and chronic pelvic pain makes her a valuable contributor to both research and advocacy in women's health. Her Postdoctoral work has received 3 grants to support project costs, a UBC Health Innovation Funding Investment award, a Michael Smith Health Research BC Convening and Collaborating Award, and a WHRI Catalyst award. She is also supported by a CIHR Postdoctoral Fellowship.Resources:Dr. Orr's Website: https://natashaorr.com/Endometriosis and Pelvic Pain Laboratory: https://endopain.endometriosis.org/_For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:  Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiativeFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

Join us in a powerful conversation with Anna, as she shares her journey with endometriosis, breaking down misconceptions and fostering awareness.🎙️ News Alert! GOSH podcast is now streaming in video format on YouTube.✨  Try out our new format through the link: https://youtu.be/qg5QQb0pyq8Anna's Bio: Anna Leonova is a dedicated researcher currently pursuing a PhD in Women+ and Children’s Health Sciences at UBC. She holds a BSc in Biochemistry and Molecular Biology from Trent University and an MSc in Medical Sciences with a specialization in Physiology and Pharmacology from McMaster University. Anna's academic journey has been intertwined with her personal experience, having battled endometriosis for nearly 18 years. For the past seven years, Anna has focused her research on endometriosis, emphasizing the importance of knowledge translation. She believes in the responsibility of researchers to effectively communicate their findings to those directly affected by their work. Alongside her academic pursuits, Anna engages with the endometriosis community through social media, sharing informative posts to raise awareness and foster connection. Anna's pragmatic approach and commitment to bridging the gap between research and personal experience make her a valuable contributor to the understanding of endometriosis. Resources:Book: “The Doctor Will You See Now” by Dr. Tamer SeckinEndometriosis Network Canada: https://endometriosisnetwork.com/Endometriosis and Pelvic Pain Laboratory: https://endopain.endometriosis.org/Resources, educational videos, research opportunities, and community eventsUpcoming event: Run to end endo (in support of The endometriosis network Canada) – June 9 in Vancouver – follow the lab for more informationMarch – endometriosis awareness month: learn and share about endometriosis!_For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:   Twitter – @GCI_Cluster  Instagram – @gynecancerinitiative  Facebook – facebook.com/gynecancerinitiative  For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

Welcome to the first episode of the new year! Meet Geneviève Allaire-Stacey, Researcher behind eSense-Cancer 🌱👩‍🔬 Delve into the insightful work of Geneviève, focusing on adapting therapy modules in sexual health for gynecologic cancer survivors. Her commitment to nuanced, patient-centric research is at the heart of eSense-CancerGeneviève Allaire-Stacey is currently doing her Master's of Science in Women+ and Children’s Health Sciences under the supervision of Dr. Lori Brotto. In 2022, she graduated from McGill University after completing her Bachelor of Arts as a double major in Psychology and Gender, Sexuality, Feminist and Social Justice Studies as well as a minor in Behavioural Science. Through her studies at McGill, Geneviève developed a marked interest for women, sexuality, and health, and it is with the goal of having a direct impact on women’s health that she applied for the WACH program. Genevieve’s focus at UBC and in the Sexual Health Research Laboratory is centered on treatments for sexual dysfunction in cancer survivors. Specifically, she works on eSense-Cancer, a branch of the eSense study, which seeks to adapt the original digital therapy modules to gynecologic cancer survivors’ lived experiences with female sexual dysfunction. Geneviève hopes to continue onwards doing work related to sexual health and advocacy once she is done her master’s degree.   Geneviève’s presentation won Barbara Berthon Ovarian Cancer Presentation Award at the annual GCI Trainee Research Day conference.Sexual Health Lab at UBC https://brottolab.med.ubc.ca/ https://brottolab.med.ubc.ca/genevieve-allaire-stacey/   eSense Cancer https://brottolab.med.ubc.ca/studies/esense-cancer/  _For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:   Twitter – @GCI_Cluster  Instagram – @gynecancerinitiative  Facebook – facebook.com/gynecancerinitiativeFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative

GOSH Podcast survey:https://ubc.ca1.qualtrics.com/jfe/form/SV_9vJ2Jt3Mr6OPJBkIn our previous episode, we heard from Amanda’s mother, Anita, who told her story of her ovarian cancer diagnosis. Today we will hear from Amanda, a beloved daughter and one of Anita's caregivers. Amanda is a Registered Massage Therapist with nearly three decades of experience in her field. She is happily married and the proud mother of a 15-year-old son. Her family extends beyond her immediate household, with a younger sister residing out West near her mother, Anita. However, Amanda's journey has also been marked by loss, as she lost her older brother in 2016 due to a heart-related condition. Today, Amanda will share her perspective as a caregiver and a loved one, shedding light on the journey that came with supporting a family member through a gynecologic cancer diagnosis.  Anita’s TikTok: @tastyentertaining https://www.tiktok.com/@tastyentertaining  Anita’s Instagram: @tastyentertaining https://www.instagram.com/tastyentertaining/  _For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]   Where to learn more about us:   Twitter – @GCI_Cluster  Instagram – @gynecancerinitiative  Facebook – facebook.com/gynecancerinitiative  For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected] Where to learn more about us: Twitter – @GCI_Cluster Instagram – @gynecancerinitiative Facebook – facebook.com/gynecancerinitiative