The Patient from Hell Podcast
Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving with Jane Gutkovich of the EHE Foundation
1. The power of patient organizing and advocacy
2. Decision making for rare cancers with small amounts of data – relying on some combo of trust, faith and instinct
3. The role of the family care team to support patients
4. The evolution of patient communities from small to larger and the opportunities and challenges that presents
Podcast — Patient from Hell
by Manta Cares
For patients, caregivers, and survivors seeking a confident way to manage complex medical conditions. We know the journey's hard because we've been through it, and we're here to make the process just a little easier.
Get inspired by survivorship stories, gain tips, tricks, and advice from medical experts, and join a global community of support and resources. Listen on Apple Podcasts, Spotify, or wherever you listen to podcasts.
About The Patient from Hell Podcast
The Manta Cares podcast was launched as a resource and community for patients, caregivers, and survivors navigating complex medical conditions. Our founder Samira Daswani is a breast cancer survivor raising cancer awareness and bridging the gaps between patient, caregiver, and doctor.
Each episode of the podcast will cover a different aspect of the cancer journey. In past episodes, we've talked about the diagnosis process, forming a support team, treatment considerations, and building a strong mindset in the face of a daunting journey.
Past and upcoming podcasts feature the NCCN Foundation, Pancreatic Cancer Action Network, and National Ovarian Cancer Coalition, among other national organizations at the forefront of cancer advocacy and research. Podcast guests include patients, survivors, caregivers, cancer advocacy groups, and medical experts.
January 20, 2023
1. Financial toxicity is driven by a lack of transparency in the healthcare system as well as the complicated nature of cancer care.
2. Health inequities drive financial toxicity and are deeply rooted in the healthcare system
3. Tips for patients and caregivers on navigating financial challenges during the cancer experience
January 9, 2023
1. What advice would adult Jennifer give to her 17-year-old self about being diagnosed with cancer?
2. The importance and value of patient data
3. How does the recent recognition of Henrietta Lacks’ cell line and its incredible impact on science relate to digital patient data today
December 12, 2022
The art and science of personalized cancer treatment, tumor boards, and the business of healthcare with medical oncologist Dr. Gabriel A. Brooks
1. The art and science of personalized cancer treatment.
2. What are tumor boards, how do they work, and why are they essential for cancer treatment decision-making?
3. Team-based oncology care delivery, understanding patient preferences, and providing appropriate care.
4. The business of oncology and how reimbursement influences patient care decisions. Intersectional experience as a cancer survivor across sex, sexuality, and dating.
November 28, 2022
Navigating sex, dating, and stigma during the cancer experience with Sanjay Deshpande
1. Intersectional experience as a cancer survivor across sex, sexuality, and dating.
2. Nuances of cancer stigma in South Asia and how to navigate it.
3. The need for creating resources specific to the South Asian Young Adult community.
November 14, 2022
1. How to live a life with an incurable cancer
2. Using creativity in moments of darkness
3. Creating a cancer support community for South Asians
November 1, 2022
Impact of sexual health, barriers in cancer care for the LGBTQ community and the evolving role of the oncologist-sherpa with Dr. Don Dizon.
1. The changing role of the Oncologist - Starting as the Sherpa, transitioning to a mentor, and then breaking up!
2. Awareness of barriers the LGBTQ community faces in accessing healthcare.
3. The distinction between addressing reproductive health and sexual health in cancer care.
October 11, 2022
Learning to live in the moment, maximize time, a take a moment to pause. Dr. Maeve Baechler coaches 11 year survivor, Molly Lindquist, to gain clarity & make herself a priority
1. Giving yourself the permission to prioritize oneself while being a mom, wife, friend, supporter and survivor. Using the “mid-day reset,” to quieten the cancer devil on the shoulder.
2. Dr. Maeve’s coaching approach helps Molly identify her goal, drive clarity, and create actionable steps to “pause” and prioritize herself.
3. The juxtaposition of living in the moment, and maximizing time we have as cancer survivors.
October 3, 2022
Advocating for yourself as an AYA cancer patient and paying it forward with Bay Area Young Survivors (BAYS) board member, Yvonne Tou
1. Experiencing breast cancer as an AYA (adolescent and young adult)
2. Self-care, the role of journaling and mental health as a cancer patient
3. The role and impact of community for supporting young cancer survivors and patients
September 19, 2022
Understanding the Science, Symptoms and Community around Ovarian Cancer with Karen Young from the National Ovarian Cancer Coalition
1. Overview of ovarian cancer
2. Karen’s experience of building a cancer community
3. The science and symptoms of ovarian cancer; building awareness and education resources for women
September 5, 2022
1. Personal experience and reflections from being a caregiver
2. Understanding the survival early-stage oncology investing ecosystem
3. Emerging themes and trends in oncology innovation and patient care
August 25, 2022
Caring for Caregivers with Dr. Nirav Shah, Senior Scholar at Stanford University's Clinical Excellence Research Center
1. Nuances of understanding value-based care and the invisible care-giver economy
2. The importance of caring for caregivers
3. Insights on who the caregivers are and their experience with COVID
August 8, 2022
Understanding Community, Collaboration and Caregiving with the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC) Paula Kim - PART II
1. Taking PanCan global and multicultural insights on cancer
2. The art of translating a movement into a sustainable organisation
3. Importance of doing the hard and obvious things
July 25, 2022
Understanding Community, Collaboration and Caregiving with the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC) Paula Kim - PART I
1. Paula's learnings and insights from the early days of setting up PanCan
2. The art and science of community building
3. Nuances of interdisciplinary collaboration, personal learning and upskilling in the face of complexity
July 11, 2022
1. Insights on the evolution of medical science, public policy and funding for cancer care in the U.S.
2. The importance supportive care, guidelines and resources, and the role of NCCN and the NCCN Foundation
3. Framework for understanding life-span and quality of life for patients and caregivers
June 27, 2022
1. Is a chess analogy really appropriate for cancer?
2. Pros and cons of thinking of cancer in the form of infinite games
3. Nurturing ambiguity and making high stake decisions
June 13, 2022
1. Are metaphors like “infinite games” valid for approaching cancer care?
2. Developing your strategy when everything seems uncertain and unclear
3. The importance of rethinking assumptions
May 23, 2022
1. What does the caregiver ecosystem really mean
2. Second order effects of being diagnosed with cancer
3. Exploring different strategies to grapple with the crisis
April 26, 2022
1. The emotional, psychological, and financial costs of cancer diagnosis
2. Principles of building a community of cancer survivors and caregivers
3. Processing suffering and becoming anti-fragile
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Partnerships, Sponsorships, & Features
Want to partner with us to bring high-quality content and educational resources to a special community? Does your organization want to sponsor an episode and get featured on our podcast? Have an idea for collaboration? Please reach out to Molly at firstname.lastname@example.org.
Disclaimer: Manta Cares does not provide medical advice. Please consult your medical care provider for your personal health circumstances.
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Read our blog
Patients need easy access to our data. We need to know it is secure and kept private. While the federal laws of the US purport to guarantee that the systems we have deployed are inadequate to achieve the stated goals. In reality, some many shortcuts and workarounds allow healthcare systems or electronic health record companies to claim they are following all of the rules while simultaneously making data access difficult for patients but easy for commercial data partners. Patients deserve to get all of their health care related data (clinical, administrative, and financial) easily, digitally, and in a digitally-portable fashion that can integrate across systems and travel with them if they change insurers or doctors. We deserve to know where our data is getting transferred, who has it, and what they are using it for, even when it is de-identified. If our data includes a significant portion of our record or if it includes imaging scans, pathology, genomic, or molecular data, or lab values, we should be told.View Details
Tumor boards can be a patient's best tool in obtaining a wide range of clinical opinions. A tumor board is a group of multi-disciplinary doctors who meet and discuss treatment options for individual cancer patients. Typically, a tumor board includes different backgrounds, specialties, and expertise. This can include surgeons, radiation oncologists, pathologists, and medical oncologists. The interdisciplinary nature of a tumor board is critical to its success. The goal of a tumor board is to surface fresh, new, and different perspectives than the standard of care. It also serves as a way to disseminate cutting-edge knowledge among doctors.View Details