Patient from Hell Manta Cares

Emily Capilouto, a medical anthropologist and cancer advocate, discusses the topics of medical anthropology, fertility preservation, and IVF. She also shares her work in oncology and raising awareness about prostate cancer. The conversation includes a rapid-fire Q&A session on fertility treatments and options. The main takeaways include the importance of early discussions about fertility for cancer patients, the role of reproductive endocrinologists in managing fertility treatment, and the various options available for creating a family outside of IVF. Emily shares her personal experience with IVF and the challenges she faced due to legal and financial barriers where you’ll probably find some relatable issues that extend beyond fertility treatments.

Key Highlights:

1. Early discussions about fertility are important for cancer patients and their families. 

2. Fertility preservation techniques, such as egg freezing and embryo freezing, can help cancer patients preserve their fertility. There are also various options available for creating a family outside of IVF, including surrogacy, adoption, and fostering.

3. Legal and financial barriers, such as lack of insurance coverage and restrictive laws, can significantly impact access to not only IVF care but other branches of medicine. 

About our guest:

Emily completed a Masters of Public Health in Epidemiology at the University of Alabama at Birmingham in 2012 and a Masters of the Arts in Medical Anthropology at the University of Kentucky in 2018. Her academic research focused on the detection and prevention of reproductive cancers and access to reproductive healthcare in domestic and international settings. She has worked in the nonprofit sector for the last fifteen years at the local, state, and federal level. When not focusing her efforts on health promotion, Emily is forever working to complete her classical Pilates teacher certification, loves curling up with a good mystery or thriller novel, and enjoys spending time with her friends, family, and husband.

Key Moments:

At 14:40 “So many cancer patients choose to use fertility treatments because there is a chance that treatments and surgeries that they will undergo to fight cancer can impact fertility. That is true for both men and women.”

At 35:59 “The Alabama Supreme Court ruled that embryos have the same legal status as children, disrupting IVF care in the state. Most clinics, including mine, halted services due to potential legal risks. This ruling stemmed from a lawsuit referencing the Wrongful Death of a Child Act after a patient's embryos were accidentally destroyed. The plaintiffs did not intend for their lawsuit to affect other families seeking IVF, but the ruling had widespread consequences. For about three weeks, the legal status of embryos as children meant mishandling them could be considered homicide, and transferring embryos out of state was impossible.”

At 49:47 “I had someone this week tell me that navigating cancer is like getting a PhD. You have to get the PhD to be able to navigate cancer. I had another person tell me that the trauma of getting through the healthcare system is worse than the trauma of getting the cancer diagnosis.”

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.


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This episode features Aurora Lucas sharing her experience navigating stage 3A lung cancer, starting from her symptoms and misdiagnosis to her eventual diagnosis and targeted treatment. She shares aspects of her story that all of us can relate to: insurance problems, delays, being rushed into life altering decisions, and more. She also talks about the impact of her diagnosis on her fertility and the decision to undergo fertility treatments before starting treatment. She highlights the need for open conversations about taboo topics like fertility in young cancer patients. Today Aurora is active in patient advocacy and shares her story with the hope that listeners like you can find comfort and community in this tough diagnosis. 

Key Highlights:

1. Advocating for oneself is crucial in the healthcare system, especially for cancer patients. This includes getting a second opinion to explore alternative treatment options and biomarker testing, engaging in open conversations about taboo topics with your doctors, and connecting with survivor communities and support through social media.

2. Misdiagnosis and delays in diagnosis can significantly impact a patient's treatment journey. Newly diagnosed patients should try to come prepared with questions and a notebook to medical appointments, and seek support from survivor communities for accurate information and guidance.

3. Grappling with the uncertainty about the future is a common struggle for cancer patients. Finding ways to cope, live in the present moment, and reevaluate priorities, including the importance of healthy relationships, are key aspects of navigating a cancer diagnosis.

About our guest:

Aurora hails from the land of 7,000 islands, the Philippines. Having left her country at the age of 9 and becoming a part of the Filipino diaspora, Aurora continues to see the world from different perspectives. She is fluent in Tagalog, English, and is learning Spanish. Aurora was diagnosed with Non Small Cell Lung cancer at the age of 28, during her 2nd year of her EdD in Leadership program. She is now 31 years old, and in the final stretch of her EdD program. Aurora is fiercely committed to co-creating conversations that are centered on serving BIPOC patients, and their communities. During her free time, she loves looking for coffee shops, journaling, taking photos and videos, as well as learning new languages. You can find Aurora on: Substack, Instagram, TikTok

Key Moments:

At 07:46 "I remember this one resident, she held my hand and was staring at me. I thought, okay, she's trying to tell me something but can't because she's not my actual doctor. They kept staring at my hands, lifting them up, and looking at my fingers without explaining. I later found out that curving of your fingers can be a symptom of lung cancer."

At 15:55 "I distinctly remember being told about cancer not by the healthcare system or anyone I knew. Someone recently asked me, doesn't the doctor call you for an in-person appointment? I said, no, the odds are Dr. Google is the one telling you. That's the reality."

At 26:23 "Every time I saw that speaking up actually changed things to how I wanted, it gave me more confidence."

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.


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In this episode, Dr. Geoff Oxnard, a thoracic oncologist, discusses his career journey into oncology and shares insights from his experience treating lung cancer patients and conducting research. He emphasizes the increasing role of precision medicine and genomic and biomarker testing in guiding treatment decisions, providing examples of how identifying specific mutations can lead to dramatically better outcomes with targeted therapies. Dr. Oxnard also highlights the changing narrative surrounding lung cancer, with emerging stories of remarkable responses and newfound optimism as treatments improve. He provides perspective on navigating clinical trials, especially for rare genomic subtypes, and shares his motivations for transitioning from academia to the pharmaceutical industry, driven by a desire to have a larger impact on drug development and patient care.

Key Highlights:

1. The increasing role of precision medicine and genomic testing in guiding lung cancer treatment decisions.

2. The changing narrative and renewed optimism surrounding lung cancer, as treatments improve and stories of remarkable responses emerge.

3. Dr. Oxnard's transition from academia to the pharmaceutical industry, driven by a desire to have a larger impact on drug development and patient care.

About our guest:

Geoff Oxnard, M.D., is the Vice President, Clinical Development, Global Head, Thoracic Cancer at Loxo@Lilly. Previously, Dr. Oxnard served as a thoracic oncologist and clinical-translational researcher at Dana Farber Cancer Institute and was also an Associate Professor of Medicine at Harvard Medical School. Dr. Oxnard received his BA in chemistry from Harvard University and his MD from the University of Chicago-Pritzker School of Medicine. He completed his residency in internal medicine at Massachusetts General Hospital and completed his fellowship in medical oncology at Memorial Sloan-Kettering Cancer Center. As an experienced oncologist, Dr. Oxnard is passionate about raising awareness of thoracic cancer and helping to make an impact on cancer care.

Key Moment:

8 minutes: “It starts with precision therapy, if I may, right? Once you have defined a specific molecular subtype, you've tried to sort of sift through the randomness of cancer care to find a group of patients who are going to behave in a similar way. Let's go into that for a moment, if I may, OK? EGFR mutations. If you give an EGFR inhibitor in the original studies to a bunch of patients on average with lung cancer, they live a couple months longer, but 10 % of those patients have fantastical responses that can last for a year or two or more. And so when you are a lung cancer patient, which are you looking for, by the way, to live on average two months longer or to have a fantastical response that can work for years? And of course, people are looking to be that outlier.”

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.


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In this episode, Kimary Kulig, PhD, MPH dives into the topic of cancer biomarkers. Kimary explains the difference between genes and proteins, germline versus somatic gene testing, and the critical importance of testing for both as biomarkers for treatment selection. She also describes the world of lung cancer biomarkers and the implications for treatment decisions. The conversation highlights the need for patients and their families to understand biomarkers and the impact those biomarkers have on treatment options. Biomarker testing in cancer patients is crucial for personalized treatment, but there are significant challenges and delays in the current system. The long turnaround time for biomarker testing can be harmful to patients with aggressive cancers who need immediate, targeted treatment. Kimary highlights that patients and their families need to be aware of the importance of biomarker testing and advocate for it. 

Key Highlights:

1. Biomarker testing should encompass both germline and somatic gene alterations. Germline testing is sometimes called “genetic testing” and identifies inherited mutations that appear in every cell in the body, whereas somatic gene  testing detects mutations just in cancer cells, some of which can be targeted with specific drugs.

2. There can be significant delays in biomarker testing results, which can be particularly harmful for patients with aggressive cancers. These delays often result in patients beginning chemotherapy while awaiting results, potentially impacting the efficacy of targeted therapies.

3. Kimary discusses the lack of “reflex” testing in the current system, where biomarker tests are not automatically ordered based on the type of cancer. Implementing reflex testing could speed up the process, ensuring timely and appropriate treatment for patients.

About our guest:

Kimary Kulig’s professional career has spanned the academic, non-profit, large pharma, start-up, and healthcare technology ecosystems. Kimary is currently Owner and Principal of Kulig Consulting, providing advice and service to biotech start-up, pharmaceutical, and medical device companies who develop oncology products.  She also provides individual Biomarker Navigation services to cancer patients as My Biomarker Navigator™. Kimary applied her unique training in immunology, molecular oncology, and epidemiology for 12 years at both Pfizer and Bristol Myers Squibb. Her pharma career is highlighted by research on lung cancer biomarkers which are now standard of care companion diagnostics.  Kimary was also Vice President at the National Comprehensive Cancer Network (NCCN) where she oversaw all operations of its Outcomes Research Database. At Verily Life Sciences, Kimary was Head of Oncology Clinical Research and led digital pathology machine learning and wearable device oncology application development. Kimary continues in her goal to bring AI tools to clinical practice as a member of the Friends of Cancer Research Digital Pathology Working Group. Kimary received her PhD from New York University’s Institute of Graduate Biomedical Sciences and her MPH from Columbia University’s Mailman School of Public Health.

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.


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Dr. Kozower, a thoracic surgeon, discusses the role of surgery in lung cancer treatment and the use of surgery in the diagnosis of lung cancer. The conversation then shifts to the PCORI study on lung cancer surveillance, where Dr. Kozower explains that the intensity of surveillance, such as the frequency of CT scans, does not impact survival rates for lung cancer patients in retrospect. We also discuss the future of lung cancer treatments. 

This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Kozower.

Key Highlights:

1. Surgery is the primary treatment for early-stage lung cancer, serving both curative and diagnostic purposes.

2. Surveillance, including regular follow-up visits and imaging, is crucial for detecting new lung cancers, especially in individuals with a history of the disease. Screening, on the other hand, aims to detect cancer in its early stages in individuals without symptoms.

3. The narrative around lung cancer is changing due to advancements in molecular diagnostics, targeted therapies, and immunotherapy, offering more hope and optimism for patients.

About our guest:

Benjamin D. Kozower, MD, MPH is a Professor and Vice Chair of Surgery at the Washington University School of Medicine in St. Louis, MO. He completed his General Surgery training at the University of Connecticut in 2004 and his Cardiothoracic Surgery residency at Washington University in 2006. Dr. Kozower worked at the University of Virginia in Charlottesville, VA from 2006-2016 until returning to St. Louis in 2016. He is a General Thoracic Surgeon with a focus in thoracic oncology and directs the Thoracic Robotic Program at Barnes Jewish Hospital. He is also a clinical outcomes and health services researcher with funding from the Agency for Healthcare Research and Quality, the Patient Centered Outcomes Research Institute and the National Cancer Institute.

Key Moments:

At 7:29 "Surgery is the traditional treatment for early-stage lung cancer, patients who have small tumors typically confined to the lung when hopefully it can be curative."

At 14:50 "Everybody's followed after their cancer treatment. What's not clear is how often should we follow people?"

At 15:38 "The more frequently I'm seen, the earlier something could be detected and the better I'll do. Makes perfect sense. Unfortunately, I'm not sure it's true." 

At 35:41 “Fortunately now we're starting to see the development of targeted therapies for specific [lung cancer] mutations. We're starting to see different types of therapies, and not just chemotherapy, but something called immunotherapy, which stimulates the body's immune system to help fight the cancer. So these things have dramatically changed the paradigm of how we treat lung cancers.”

Visit the Manta Cares Website

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.


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Abigail Johnston shares her experience as a patient with de novo metastatic breast cancer since 2017. She discusses the challenges she faced in getting a diagnosis and the systemic flaws of the healthcare system. Abigail emphasizes the importance of being an informed and proactive patient, and advocating for yourself even if you’re labeled “difficult.” Abigail’s fighter spirit in this episode is truly inspiring, and that’s what makes her a fellow patient from hell. 

Key Highlights:

1. Being an informed and proactive patient is crucial and so is seeking multiple opinions for informed decisions.

2. Personalized, patient-centered care is essential for better healthcare outcomes, focusing on individual needs and preferences. There are fundamental flaws to the current system which treats patients like products on an assembly line. In other words, there’s lots of work that needs to be done to achieve personalized care. 

3. To be a “patient from hell” means that you won’t blindly follow what your doctors say; it means that you’ll ask questions, get multiple opinions, and do your own research before committing to a choice that will likely impact you permanently.

About our guest:

Abigail is a daughter, mother, wife, and attorney who was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in June of 201, close on the heels of a misdiagnosed early stage diagnosis in March of 2017. The first few months after her diagnosis were a whirlwind and full of many profound changes, including quite a few surgeries, but Abigail soon found her footing and started her blog "No Half Measures," where she talks about whatever comes to mind, within the lens of her Stage IV diagnosis. Abigail's boys, Liam and Malcolm, who were nearly 2 and nearly 4 at the time of her diagnosis, along with her husband, Elliot, make their own appearances in Abigail's advocacy since it truly is a family affair. For Abigail, advocacy is a whole life endeavor and she never does anything halfway; working with a variety of organizations, including, but not limited to: 

1) Project Life Director of Mentorship and Legal Clinics

2) SurvivingBreastCancer.org, Board Member and Chair of MBC Leadership Committee

3) PIK3CA PathBreakers Co-founder

Outside of her cancer life, Abigail enjoys spending time with her family and very spoiled cat, reading, crafting, and dreaming up more ways to experience life with her boys.

Key Moments:

27:54: “So I tell all my doctors, I'm the boss, I'm the decision maker, you are my advisor. So you are telling me, because you know, as a, and I'll even talk about like as a lawyer, I would have expert witnesses, right? And they would help me understand or explain something that I'm unfamiliar with. So I tell them, I take responsibility for my decisions. I am leaning on you for your expertise. I am leaning on you for your recommendations, but I'm looking at this as your opinion, you're giving me your opinion, which is why I seek out multiple opinions from multiple doctors.”

⁠Visit the Manta Cares website⁠ 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.




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Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support