Patient from Hell Manta Cares

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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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

In this episode, we embark on a profound exploration of death with the help of two remarkable individuals. Katie Coleman bravely shares her experience as a survivor of Stage IV liver cancer, a path fraught with uncertainty and a lack of available information. Julie McFadden is a hospice nurse whose daily encounters with death provide unique insights. She educates online audiences about various topics surrounding death. Join us as we unpack the mystery surrounding death: the process, the taboos, doctor and patient relationships, and more.

Key Highlights:


The transition from fear to acceptance of death involves acknowledging and expressing those fears and getting educated about the dying process.


End-of-life experiences can be peaceful and meaningful, providing comfort and solace to both patients and their loved ones.


Honest conversations about the dying process are crucial for patients and their families. The fear of death can skew decision making, particularly in the context of terminal illness, but having the full picture can help patients better understand all of their options.



About our guests:

Julie McFadden, BSN, RN, has been a nurse for 15 years.  Julie is an experienced ICU, and now hospice/palliative nurse. Julie has been passionate about normalizing death through education to the masses using social media. She has been featured in Newsweek, USA today, The Atlantic, and several other articles worldwide. Her TikTok has 1.4M followers, and you can find her on all social media platforms (Instagram, Facebook, and YouTube) at Hospice Nurse Julie. Julie’s new book is coming out in June: Nothing To Fear. 

Katie Coleman is a patient advocate who was diagnosed with a rare stage IV kidney cancer in Dec 2020, at the age of 29. She has shared her diagnosis publicly on social media to spread awareness and to advocate for others with kidney cancer and rare diseases. Since being diagnosed, she has also founded a non-profit, started a podcast and is publishing an upcoming memoir, which you can preorder here. You can find her on social media here: TikTok, Instagram, Youtube and Twitter).

Key Moments:

At 09:34 “Not only am I now dealing with the crippling anxiety of death and dying, but now I'm also dealing with the crippling anxiety of letting people down by even saying and acknowledging those feelings…? But for me, it came from like, first I was terrified to look into anything. It just felt like I was doing something wrong by trying to investigate what it was like to die. But then once I got over that, where I personally found a lot of peace when I started hearing about near death experiences and end of life visions that Julie often talks about.”

At 22:02 “All I know is in watching people die a natural death, people need to know about this. People need to know about what it looks like and what happens to our bodies because it's not as scary as we think. And then when I think of my own mortality and I think about if I got diagnosed with something terminal tomorrow, I'm still human. I'm gonna have all the feelings, anger, sadness, scared. I'm still gonna be scared, but I also know that my body will take care of me. My body will take care of me. And I know that because I've witnessed it.”

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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Suppor

In this episode, we interview mother and son Ashlee and Michael, hosts of the podcast “Michael and Mom Talk Cancer." They share their personal cancer experience and discuss topics such as managing work and finances, the impact of cancer on athleticism and identity, and the importance of maintaining positivity and mental health. They also touch on the concept of toxic positivity and how different individuals have different approaches to dealing with their illness, the challenges of comparing stories and outcomes, as well as the balance between quantity and quality of life. Michael and Ashlee share their experiences of living with the constant reminder of mortality and finding joy in the small things, while also emphasizing the importance of connection and offering practical tips for navigating the cancer experience.

Key Highlights:


Having a strong support system is crucial for navigating the challenges of cancer as well as life, in general.


Acceptance and adapting to new circumstances can help you thrive throughout your cancer experience, but it’s also okay to be upset and angry (you have every right to be).


Maintaining a realistic outlook while embracing positivity is important when living with cancer.



About our guests:

Meet Michael Cramer, a 22-year-old cancer survivor and bone marrow transplant recipient, known for his social media influence. Born in Paris and raised in Miami, Michael's athletic background includes surfing, skating, and being part of the Olympic Development team for windsurfing.

Ashlee, also known as "mom," has a diverse background as a dancer turned early childhood educator turned cancer caregiver. In 2014, tragedy struck when her husband was diagnosed with Large B Cell Lymphoma. Ashlee became the sole provider for their three children while caring for her husband until his passing in 2016, which brought the family closer together. In July 2020, heartbreak struck again when Michael was diagnosed with an incredibly rare and aggressive cancer, Hepatosplenic T-cell lymphoma, with less than 200 documented cases ever. Despite the average survival being only 8 months, Ashlee quit her job to care for Michael full-time. After enduring chemotherapy, radiation, a bone marrow transplant, and various life-threatening complications, Michael miraculously survived. Throughout his journey, Ashlee never left his side, strengthening their unbreakable bond. 

Turning their heartbreak into a story of "beauty in pain" and love, Michael and Ashlee started a podcast called "Michael and Mom Talk Cancer," along with a website, blog, and YouTube channel. While Michael is still in treatment for complications, he is alive and in remission. Together, Michael and Ashlee strive to fulfill their purpose of love and connection, inspiring not only the cancer community but anyone in need of motivation.

Key Moments:

0:00-11:36 Ashlee and Michael’s Story

11:37-19:50 Comparing and Contrasting Past Confrontations with Cancer

19:51-24:25 What Michael’s Remission Looks Like

24:26-32:24 Reality Checks, Radical Acceptance, Toxic Positivity, etc.

32:25-41:28 The Insight Brought on By Daily Reminders of Mortality

41:29-44:39 Ashlee and Michael’s Advice to All Our Listeners

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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