The Patient Story: Stephanie Chuang's Journey from Patient to Storyteller cover art

The Patient Story: Stephanie Chuang's Journey from Patient to Storyteller

The Patient Story: Stephanie Chuang's Journey from Patient to Storyteller

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In this episode of Marrow Masters, we speak with Stephanie Chuang, founder and chief storyteller of The Patient Story. Stephanie shares how her life changed at 31, just two months before her wedding, when she was diagnosed with lymphoma. At the time, she was working as a TV news reporter in San Francisco and had been explaining away symptoms like fatigue, bloating, and a strange cough. A same day doctor’s visit led to blood work, an x-ray, an emergency CT scan, and then the call that confirmed lymphoma. Stephanie talks about the shock of diagnosis and the fear that followed. She also shares how much it mattered to have people around her who understood how to navigate the health care system. A family friend who was a doctor helped her get into care quickly, showed her what steps to take, and became a human compass during a frightening time. That experience stayed with her. It helped shape the reason she later created The Patient Story, so others would not have to feel so alone after diagnosis. The conversation then moves into survivorship and the emotional whiplash that can happen when treatment ends. Stephanie explains that hearing “no evidence of disease” was a huge relief, but it did not mean life went back to normal. She felt grateful, but she also felt lost. Her identity as a journalist, fiancé, daughter, sister, and busy person had been shaken. She could not simply return to the same pace or the same version of herself. Stephanie also talks about scanxiety and the surveillance cycle. She describes how difficult it can be to move from frequent monitoring to longer gaps between appointments. Graduating from three month checks to six month checks can feel like progress, but it can also feel scary. She explains that giving herself permission to feel anxious, without adding shame, helped her cope. We also talk about the phrase “the new normal” and the late effects that can follow intense treatment. Stephanie shares that survivorship requires more support than many people realize, especially when patients move from oncology care back to primary care. She emphasizes the importance of meeting people where they are, validating their fears, and helping them feel less alone. The episode closes with Stephanie’s message to newly diagnosed patients: you are not alone, your questions matter, and you deserve to speak up in the doctor’s office. The Patient Story exists to share honest, hopeful stories that help people find connection, information, and courage. Links: The Patient Story: https://thepatientstory.com/ Bag It Cancer: https://bagitcancer.org/ Escape to THRIVE: https://escape4advocates.org/ Thanks to this season's sponsors, Incyte and Sanofi. (00:00) Intro (01:34) Stephanie begins her cancer story (06:01) Navigating the medical system with help from a doctor friend (07:16) Hospital testing, biopsy, and the idea behind The Patient Story (08:35) Moving into survivorship (10:14) Identity, work, and life after cancer (13:03) Scanxiety and the surveillance cycle (16:31) Survivor guilt and transitioning back to primary care (17:47) Identity loss after leaving a news career (23:21) The phrase “the new normal” (26:36) Meeting people where they are in survivorship (28:16) The power of patient storytelling (28:41) Caregivers, care partners, and family support (30:20) Advice for newly diagnosed patients National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/ Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
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