Episode 59: Lawyer, mom, and patient from hell living with metastatic breast cancer, Abigail Johnston

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. 

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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.”

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