Tag: breast cancer

Meet Marleah: Testing positive for the BRCA2 gene at 25

Marleah’s health narrative comes from the CDC.gov website. She discovered she had the BRCA2 gene mutation at age 25. Marleah discusses her navigating the challenges of motherhood while considering surgery after completing her family. She chose to manage her breast cancer risk through frequent screenings and lifestyle choices rather than opting for preventive surgery. Inspired by her mother’s own battle with breast cancer and her own gene mutation discovery, she became a university professor specializing in hereditary cancer research. Her work focuses on understanding the emotional impact of genetic uncertainty and developing strategies to help individuals cope. The narrative highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches.

This narrative could be used to explore the intricate decisions patients face when managing a genetic disease, specifically a BRCA2 gene mutation. Marleah’s story highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. As a mother, Marleah faced certain ethical dilemmas when it came to decisions about her own health. This story could also be useful for those who are forced to make similar decisions.

Listening to Patient Narratives Exercise: Anju’s Breast Cancer story

This is an outline for a class exercise utilizing a video from the Look Now Project. The short documentary tells Ajnu’s story of treatment for breast cancer.

The class exercise is part of a one-hour session entitled “Between the Lines,” part of a training by the Northwest Narrative Medicine Collaborative in collaboration with Lewis & Clark College, which brought together undergraduate students, medical students, and medical professionals for a one-day workshop. In the “Between the Lines” session, we examined how clinical interactions are framed by medical scripts and encourage changing these frames to make room for patient stories. Then we engage in practicing listening closely to patient stories for what is said, how it is said, what is not said, and how our own experiences and identities shape what we hear.

Look Now Project: Survivor Stories

This digital humanities project includes stories and images of breast cancer survivors. Project creator Tula Goenka (a breast cancer survivor) and her collaborators seek to “break down the barriers between a survivor’s public persona and their private struggles with the disease, and to put a face on breast cancer in our local community.” The first installation in 2018 included interactive text, graphics, mirrors, and an experimental silent film accompanying 25 participants’ clothed photographic portraits and images of bare chests, and 19 who chose to remain anonymous except for their bare chest close-ups. In 2019, Goenka and her collaborators created TitBits: Breast Cancer Stories, a documentary theater performance. The multi-media website includes media coverage of Look Now and TitBits, oral histories, images of bare chests after lumpectomy or mastectomy, and resources on breast cancer.

I have used Anju’s story (“Life Happens Keep Smiling”) from this website in a Narrative Scribe Training workshop for college students, medical students, and health care professionals. After viewing the video together, we discussed what may be left out of a transcript and the importance of listening closely not only to what is said, but also how it is said, what is not said, and how our own experiences and identities shape what we hear.