Patient from Hell Manta Cares

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.

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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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Dr. Karen Wernli, a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute, explores the topic of preoperative breast MRIs in a PCORI funded study. The conversation provides insights into the emotional and practical aspects of living with cancer and the need for improved communication between researchers and patients. They touch on the classification of breast density, the importance of guidelines, and the need for mandatory reporting of breast density and discuss various topics related to breast cancer screening and decision-making. They also explore the concept of decision quality and how it is measured in research studies.

This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Karen Wernli, PhD, Diana Miglioretti, PhD, Karla Kerlikowske, MD, Anna Tosteson ScD & Tracy Onega, PhD.

Key Highlights:

1. Dr. Karen Wernli explores how breast density may influence decision quality and regret in treatment decisions involving preoperative breast MRIs. 

2. Breast density is not only a factor in masking breast cancers but also an independent risk factor for breast cancer itself, and patients are eligible for advanced screening if they have dense breasts.

3. The discussion focuses on understanding how the use of preoperative breast MRIs affects decision quality and regret among women diagnosed with breast cancer. The study aims to shed light on whether additional imaging tests lead to increased confidence in treatment decisions or potentially cause regret.

About our guest:

Karen Wernli, PhD, is a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute and Professor in the Department of Health System Science at Kaiser Permanente Bernard J. Tyson School of Medicine. She is a cancer epidemiologist and health services researcher whose work focuses on incorporating patient-centered outcomes to improve health care along the cancer care continuum, from prevention to survivorship. Her work spans several types of cancer (including breast and lung), and explores the impact of cancer in special populations (adolescents and young adults with cancer). Her research strives to answer critical questions at the confluence of patients’ needs and clinical priorities.



Research reported in this podcast  was funded through a Patient-Centered Outcomes Research Institute (PCORI) award (PCS-1504-30370). Data collection for this research was additionally supported by the Breast Cancer Surveillance Consortium with funding from the National Cancer Institute (P01CA154292, U54CA163303), the Agency for Health Research and Quality (R01 HS018366-01A1), the UC Davis Clinical and Translational Science Center, the UC Davis Comprehensive Cancer Center, and the Placer County Breast Cancer Foundation. The perspective shared is solely the responsibility of Dr. Wernli and does not necessarily represent the official views of the Patient Centered Outcomes Research Institute or Kaiser Permanente.



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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Black women with breast cancer have higher mortality rates and recurrence rates than white women. On this episode, we speak with Ricki Fairley, breast cancer survivor and co-founder of TOUCH, The Black Breast Cancer Alliance and her daughter Hayley Brown, Director of Programs, about why health equity is such a major issue, and the need for better access to care and more research on the biology of the disease in Black women. This conversation explores various themes related to Black breast cancer, including access to healthcare, disparities in trials and outcomes, the need for personalized care, and the importance of education and advocacy. Don’t miss an important conversation with this mother and daughter dynamic duo!

Key Highlights

1. Black women face higher mortality and recurrence rates of breast cancer compared to white women, indicating a significant disparity in outcomes.


2. The drugs and treatments currently available are not as effective for Black women, highlighting a need for more research and tailored approaches. Additionally, there is a lack of representation of Black women in clinical trials, limiting the understanding of how treatments may specifically impact this population.

3. Health equity and access to care are major issues in the Black community, impacting the ability of Black women with breast cancer to receive adequate care. Challenges include access to healthcare services, internet access for information, and representation in clinical trials. Addressing these challenges requires personalized care, education, advocacy, and activism to improve outcomes for Black women with breast cancer.

About our guests:

Ricki Fairley is an award-winning, seasoned marketing veteran that has transformed her strategic acumen into breast cancer advocacy. Ricki co-founded and serves as CEO of TOUCH, The Black Breast Cancer Alliance to address Black Breast Cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. As a Triple Negative Breast Cancer Survivor/Thriver, Ricki’s personal purpose, passion, mission, ministry, and blessing is to bring focus, attention, research, science, and action to eradicating Black Breast Cancer, and supporting and coaching what she calls her “Breasties” through their breast cancer experience. She also actively assists pharmaceutical companies in revamping and designing their clinical trial recruiting materials.

Hayley Brown serves as the Director of Programs and Partnerships for TOUCH, The Black Breast Cancer Alliance. TOUCH is a non-profit organization focusing on eradicating Black Breast Cancer. Hayley’s goal is to bring the TOUCH programming to where all black women live, work, play, pray, and slay through local community outreach and national events. She is currently focused on reaching young black women and defining Black Breast Health. In combination with her teaching background and her passion for supporting breasties at all parts of their journey, Hayley plans to continue to educate, empower, and equip this amazing community to be the CEO’s of their own 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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Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support

In this episode, we interview Erika Bell, PhD from the Bay Area Cancer Connections (BACC) patient advocacy community about ductal carcinoma in situ (DCIS). Erika discusses the role of BACC in supporting cancer patients, the challenges of finding support during the pandemic, and the importance of patient advocacy organizations. She then dives into a detailed explanation of DCIS, its characteristics, and how it differs from invasive ductal carcinoma (IDC). We also delve into the decision-making process for treating DCIS, discussing options such as lumpectomy and mastectomy, and examine the role of sentinel lymph node biopsy in DCIS. This includes a detailed discussion on the findings of a study regarding sentinel lymph node biopsy in DCIS patients and its implications for treatment decisions. Above all, this conversation underscores the complexity of decision-making in cancer treatment and the need for personalized support and information for patients.

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

Key Highlights:

1. DCIS is known as stage 0 breast cancer because it hasn’t spread outside of the breast ducts. However, there is not enough research to determine the conditions that increase the chances of DCIS evolving into IDC. 

2. Sentinel lymph node biopsy is not necessary for most DCIS patients as the risk of lymph node involvement is low.

3. Personalized support and information are crucial for patients to make informed decisions about their treatment.

About our guest:

Erika Bell is the Director of Cancer Information and Education at Bay Area Cancer Connections (BACC), a community-based non-profit that supports people with breast or ovarian cancer. In this role she provides health education, personalized research, and medical decision-making support to clients. She has been with the organization for 14 years and is passionate about her work and the positive impact that it has on empowering people during a difficult time in their lives. She also serves as the Vice Chairperson for the California Breast Cancer Research Program Council. Erika earned an undergraduate degree in Biology from Cornell University and a doctorate degree in Molecular and Cellular Biology and Biochemistry from the University of California, San Francisco.

Key Moments:

At 13:43 “There are a lot of people where maintaining as much breast tissue as possible is the most important thing to them in addition to still having feeling in their breast, so they opt for a lumpectomy. Other people really have a strong urge to just get everything out, “I don't ever want to have to deal with this again, please remove everything.” Those people also tend to be thinking about double mastectomies, which in the case of DCIS and no inherited genetic predisposition to breast cancer or no strong family history really is not medically indicated, but there are still women who make that choice, either driven by their anxiety or future screenings or symmetry that they want to achieve, etc.”

Visit the Manta Cares website

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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