Patient from Hell ™

1. Self-advocacy is critical in getting the care that’s best for you, so ask questions, and get involved. Your healthcare team cares for you and wants to see you back on your feet, but no one can care more than you do.
2. Caregivers need to look after themselves, too. It can feel like there’s no room for yourself, but you must find joy. Find joy so that you can cherish whoever is under your care.
3. The role of a caregiver is both rewarding and demanding. Being an advocate for a loved one is a necessary responsibility because the standard is not always the best care you can receive for your individual case.

1. Bone marrow transplant involves replacing a patient's immune system with a healthier one, either from a donor or the patient's own modified cells.
2. Caregiver quality of life, especially sleep, is crucial for patient outcomes in bone marrow transplant cases.
3. CAR-T therapy is a form of cellular therapy where white blood cells are engineered to attack specific targets, offering new treatment options for certain cancers.

1. Self-advocacy is critical in healthcare, and sometimes, switching doctors is necessary to ensure your voice is heard.
2. The emotional impact of cancer extends beyond treatment, often manifesting in long-term physical pain and identity challenges.
3. Asking for help isn't a sign of weakness—it's a vital step in dealing with the overwhelming aspects of cancer.

1. Cancer treatment can significantly impact fertility, making it crucial for patients to discuss preservation options immediately after diagnosis.
2. The financial burden of fertility treatments for cancer survivors is substantial and often not covered by insurance, as was the case for the Scherers.
3. Through their non-profit Worth the Wait, the Scherers aim to alleviate the financial barriers preventing young adult cancer survivors from pursuing fertility preservation and family-building options.

1. Dr. Barned's dual perspective as a doctor and cancer patient provides a rare and insightful look into the complexities of cancer care.
2. The episode emphasizes the importance of patient education and self-advocacy in navigating cancer treatment and palliative care.
3. Dr. Barned's experience reveals gaps in doctor-patient communication and understanding, particularly regarding palliative chemotherapy.

1. Given the significant role genetics play as a risk factor for cancer, it is important to keep your family and loved ones informed.
2. Give yourself grace; you don’t have to become a patient advocate fighting for systemic change. It’s perfectly okay if your focus is simply on getting through today.
3. Having a supportive healthcare team that genuinely wants to see you succeed is crucial—not only for the effort they’ll put forth but also for inspiring you to stay healthy and proactive in your treatment.

1. The importance of questioning medical assumptions, seeking multiple opinions, and being proactive in your treatment experience.
2. By controlling and channeling emotions like anger, patients can become more effective advocates for their own care.
3. An overview of the dos and don'ts of supporting a loved one facing a cancer diagnosis including the importance of careful communication, the power of offering practical help, and avoiding insensitive or unsolicited advice.

1. Lung cancer screening compliance is strikingly low at 5-6%, despite high risk for those with tobacco history, and additional requirements may further complicate the process.
2. Stigma surrounding lung cancer, primarily due to its association with smoking, can deter people from seeking screening or discussing their health history, despite the fact that people with no tobacco history or people who have not smoked can also develop the disease.
3. Patient involvement in research, through initiatives like citizen science programs, and improved communication of complex information are crucial for advancing lung cancer care and understanding.

1. Access to contextualized information is not easy; information online without context can be overwhelming and not specific to the patient. The best source of information about your diagnosis and prognosis is likely a doctor in the field, but finding one with the time to fully inform you is not an easy feat either.
2. Fee-for-service care is the current healthcare model, which arguably promotes quantity over quality. However, the tide is slowly but surely shifting towards value-based care.
3. To achieve the highest quality care today, the best thing you can do is advocate for yourself and seek multiple expert opinions. Keeping track of your symptoms is a good idea for effectively and efficiently contextualizing your treatment plan with your provider(s).

1. Large organizations are resistant to change, making it difficult to innovate within the healthcare industry.
2. Personalized care is the future of healthcare, allowing for tailored treatments and better outcomes.
3. Patients should educate themselves, seek second opinions, and actively participate in decision-making about their care.

1. Metastatic breast cancer (MBC) is stage four breast cancer that has spread to distant sites in the body.
Finding events and communities centered around cancer not only supports cancer patients emotionally and socially, but can also serve as informational hubs.

2.Being proactive in learning about your diagnosis, whether it’s through community and/or research on your own time, can help you feel confident with the choices you make.

3. While finding a community of other cancer patients can help, unfortunately this disease means that you will lose friends you make in these settings. It doesn’t necessarily get easier, but finding an outlet to cope with such losses is vital to your wellbeing.

1. Advancements in breast cancer treatment were highlighted at the ASCO Annual Meeting this year, including alternatives to chemotherapy and the emergence of antibody drug conjugates (ADCs).
2. Checkpoint inhibitors help the immune system recognize and attack cancer cells by removing the "brakes" that prevent the immune system from targeting the cancer.
3. Personalized approaches to treatment based on patient age, co-morbidities, and cancer type, were highlighted, leading to more effective and tailored treatments.

1. Being a cancer survivor, especially at a young age, significantly affects one's life and identity, often leading to phases of uncertainty, denial, and willful ignorance. Embracing your survivorship can lead you to people who are also in your shoes, and through connections you can find resources that will support your survivorship-specific needs.
2. The AYA (Adolescent and Young Adult) community plays a crucial role in providing support and understanding for young cancer patients.
3. Discovering fertility issues can be emotionally challenging, emphasizing the need for early conversations about fertility options like egg and embryo freezing. Survivorship clinics and self-advocacy are key in navigating these preservation options as well as other side effects of cancer treatments.

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.

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.

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.

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.

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.

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.

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.

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.

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.

1. The transition from fear to acceptance of death involves acknowledging and expressing those fears and getting educated about the dying process.
2. End-of-life experiences can be peaceful and meaningful, providing comfort and solace to both patients and their loved ones.
3. 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.

1. Having a strong support system is crucial for navigating the challenges of cancer as well as life, in general.
2. 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).
3. Maintaining a realistic outlook while embracing positivity is important when living with cancer.

1. The field of DNA sequencing has evolved over the years, but the application of genomics in cancer treatment still faces challenges in achieving widespread success.
2. Sales and commercial teams play a crucial role in educating clinicians about new innovations in personalized oncology, and oftentimes scientific/product innovations take a while to actually become a part of a clinician’s practice.
3. The future of personalized oncology involves the development of multiple techniques for selecting the right drug for the right patient at the right time, as well as increased patient involvement in their own care.

1. Cultural taboos towards mental health and how finding communities who struggle with similar problems can help with depression, anxiety, etc.
2. Hypnotherapy’s capabilities for improving quality of life, including mental health, pain management, and sleep quality in cancer patients.
3. The trials and tribulations of becoming a caregiver and potential research on hypnotherapy for caregivers.

1. There is a gap between intended care and actual care. The solution doesn’t have to be so grand either; we can start at small acts of kindness and accessibility.
2. Communication with patients should be tailored to each individual, taking into account their unique experiences and perspectives.
3. There is often no singular right answer in cancer treatment, and the best plan for a patient may vary depending on their circumstances.
4. Doctors should also prioritize their own well-being to prevent burnout and thus be able to provide better care to their patients.

1. Initially a cancer diagnosis triggers fears and uncertainties about mortality, but acceptance of mortality leads to a rewarding change of perspective and even a fulfilling life. Encountering death transforms life by influencing priorities and perspectives.
2. As a result of the shift in perspective, facing your own mortality may negatively impact bonds outside the cancer community. Feelings of isolation and not fitting in are common, particularly in situations dominated by small talk.
3. Finding a balance between personal fulfillment and social interactions is challenging but crucial. Prioritizing meaningful activities and relationships is important for a fulfilling life.

1. The pros and cons of local oncology care and academic-affiliated oncology care, as well as what Dr. Terry does to help alleviate the gaps of community care.
2. The importance of physical activity (not only on the body), but also on the emotional side of the cancer experience.
3. Cancer 101: Dr. Terry’s usual protocol for consulting new cancer patients and his long term hopes for the future of oncology and healthcare.

1. The three trade-offs in healthcare economics are: equity, efficiency. and quality of care.
2. What are examples of overuse of low value care? What are examples of underuse of high value care?
3. Racial disparities in healthcare, specifically in Prostate Cancer, between African American and white patients
4. A current solution to disparities that healthcare researchers like Dr. Jayadevappa are looking into is shared decision making through a preference assessment.

1. We get a peek into a typical clinician’s workday and the structural issues within it.
2. Three ways the healthcare system is fragmented: medical culture, loss to follow-up, and technology—and how they impact patients.
3. The issues with finding primary care for cancer survivors and why post-cancer treatment is arguably the hardest part of the journey.
4. What can you, as a patient, do to improve your visits?

1. The intersections of identity, including being Jewish and BRCA2 positive.
2. The importance of advocating for yourself with your care team.
3. How the emotional and physical toll of living with terminal cancer can still bring moments of resilience and humor.

1. Explore David's profound relationship with faith and how even in the face of cancer, he is certain that The Creator is looking out for him through “God Winks”.
2. Advice on paying attention to intuitive feelings, especially when something feels off, and the importance of getting a diagnosis sooner rather than later.
3. David's unique approach to faith and what he’d like to be remembered for are discussed, providing insight into the values that keep him upright in his journey.

1. There are an increasing number of older adults with cancer, yet older adults are often underrepresented in clinical trials.
2. Social networks play a significant role in decision-making, and it is important to consider the influence of family and friends on patients' choices.
3. Patient input is valuable in developing interventions and improving care delivery.

1. The importance of individualized decision-making for colorectal cancer screening in people aged 76 to 85.
2. How clinician training prompted an increase in conversations about preferences and options for colorectal cancer screening.
3. “Can we talk about my options?” or “Here are my goals” as phrases to encourage collaboration between doctor and patient

1. The study of population health (epidemiology) versus individual health.
2. Comparing Mammograms and MRIs for breast cancer surveillance.
3. Examining the need for a more patient-centered approach to healthcare.

1. Why making a decision about treatment should be a collaboration between the patient and their care team.
2. How decision aids and coaching can help patients feel prepared to more actively participate in decision making.
3. How to ensure that a patient’s expert opinion is integrated into treatment plans.

1. The study of population health (epidemiology) versus individual health.
2. Comparing Mammograms and MRIs for breast cancer surveillance.
3. Examining the need for a more patient-centered approach to healthcare.

1. How family dynamics and perspectives change after a cancer diagnosis.
2. How family dynamics and perspectives change after a cancer diagnosis.surveillance.
3. The ripple effect that our choices have in creating a future we never expected.

1. The art of combining clinical guidelines and patient preference to make the best treatment decision.
2. The role of patient goals in making decisions and realizing that decisions are being made for a “future self” using “current self” experiences.
3. Exploring the three-talk model of decision making: team talk, option talk and decision talk.

1. Importance of informed decision making and arming patients with accurate and reliable information.
2. Understanding the concept of patient preferences in treatment decision making.
3. Overcoming decision biases and how the emotion of a cancer diagnosis can outweigh a rational decision-making process.

1. The power of the time Wills’ bone marrow donation gave the family to create memories with Andrew.
2. How Esther’s maternal intuition ended the arduous path to a cancer diagnosis for Andrew.
3. Andrew’s legacy of joy in guiding the family to live without regrets and take advantage of every opportunity presented to them.

1. What is comparative effectiveness research and why does it matter to cancer patients?
2. The evolution of the stigma associated with Prostate Cancer.
3. How to think about the nuances of PSA screening tests.

1. How outdoor adventures have shaped David’s view on leadership and life.
2. Recognizing the value of all roles in a group and how the sum of the parts contributes to the success of the whole.
3. The power that comes from an insecure future in fueling an adventurous spirit.

1. The role of family caregivers during cancer treatment
2. How faith, intent and spirituality guided Monika’s caregiving
3. Navigating nutrition during cancer treatments

1. The balance of living life as if you have might have months to live or you might have many years to live.
2. The power and limitations of data and how systemic biases influence the way people interpret information.
3. Life insights from Jeff’s book, “Living: Inspiration from a Father with Cancer”.

1. What are CDK 4/6 inhibitors and why are they important?
2. How can genetic testing inform cancer treatment plans?
3. How do physicians and patients think about and integrate new scientific findings?

1. What brings 40,000 people to Chicago for the ASCO annual meeting?
2. How does the scientific information presented at ASCO impact patients and the public?
3. The importance of transparency and trust in presenting scientific findings.

1. The importance of mental fitness to help improve physical fitness.
2. Tips for cancer survivors to regain strength and mobility after treatment.
3. The power of consistency and focusing on the process rather than the end result to achieve goals.

1. The power of social media and storytelling for rare cancer patients
2. The value of second opinions and shared decision making with your doctors
3. The importance of asking questions and self advocacy

1. How to balance cancer treatment with quality of life
2. Understanding radiation oncology and holistic patient needs
3. Embracing diversity and building patient trust

1. Defining the term “stress” and the impact of elevated distress levels
2. How uncertainty activates the brain
3. techniques to manage stress and uncertainty

1. Mind-body connection and the internal & external stimuli driving stress
2. Learning to live with uncertainty, fear and trauma in survivorship
3. Quantity vs. quality of life and the the cost-benefit analysis for people living with cancer

1. Reprioritizing life after a metastatic breast cancer diagnosis
2. Navigating clinical trials and contributing to science
3. Communicating a cancer diagnosis to loved ones and finding silver linings

4. Life lessons learned in the face of uncertainty

1. The power of imaging for cancer early detection
2. How a personal cancer diagnosis motivates and inspires professional work in the cancer research lab
3. Following motherly instinct to push for a diagnosis for your child

4. Caring for yourself when you’re a cancer patient’s caregiver

1. The intersection of art and global health
2. Universal power of storytelling to fight cancer stigma globally
3. The importance of developing culturally appropriate cancer programs

4. The difference between a healthcare system & a healthcare industry

5. The emergence of a new public health crisis with the latest data on alcohol consumption and cancer risk

1. The unique nature of indolent (slow growing) cancer and living as a patient for +20 years

2. Examining median survival stats and Stephen Gould’s paper “The Median Isn’t the Message”

3. Nutrition modifications and the shift to a plant-based diet

4. Grappling with uncertainty using Distraction + Mindfulness

5. The evolution of treatment and imaging in her cancer over the past 21 years

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

1. Financial toxicity is driven by 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

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. Building the bank for patient data

4. Henrietta Lacks’ cell line and its incredible impact on science relate to digital patient data today

1. The art and science of personalized cancer treatment.

2. What are tumor boards, how do they work, and why are they important 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.

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.

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

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

1. Jessica Fishman’s journey dealing with her mother’s death and inheriting the BRCA1 mutation

2. Living, while knowing you will get cancer. 

3. Navigating survivorship, finding a way back into the society and enhancing meaning through giving back to the community

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.

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

1. Overview of ovarian cancer.

2. Karen’s journey and experience of building the National Ovarian Cancer Coalition (NOCC) and the power of the community

3. The science and symptoms of ovarian cancer; building awareness and education resources for women

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

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

1. Taking PanCan global and multicultural insights on cancer

2. The art of translating a movement into a sustainable organization

3.Importance of doing the hard and obvious things

1. Learnings and insights from the early days of setting up PanCan

2. Art and science of community building

3. Nuances of interdisciplinary collaboration and personal learning and upskilling in the face of complexity

1. Insights on the evolution of medical science, public policy and funding for cancer care in the US

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

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 taking high stake decisions

1. Are metaphors like “infinite games” valid for approaching cancer care?

2. How to develop your strategy when everything seems uncertain and unclear

3. The importance of rethinking assumptions

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

1. Emotional, psychological and financial cost of being diagnosed with cancer

2. Principles of building a community  of cancer survivors and caregivers

3. Processing suffering and becoming anti-fragile