My Fight with Breast Cancer Drove Me to Fix Primary Care
By: Chloe Harrouche
Tags: Founder Stories, Primary Care, Healthcare, Health And Wellness, Wellness

My Fight with Breast Cancer Drove Me to Fix Primary Care

I had gone in for a sonogram to check on a lump in my left breast. I was young, no family medical history — I didn’t think anything of it. They took a biopsy just in case. A few days later, they called to tell me it was cancer. The lump I had felt for almost a year, one that my gynecologist had said was nothing, was malignant. Confused and scared, I went back in for more tests.

Was this really happening? Could I die from this? Would I need chemotherapy and lose all my hair?

It turned out I had Stage 2 breast cancer. I was 23 years old. I did lose my hair, but that was far from the worst of it.

My family stepped up in ways I could have never imagined. My aunt, an ER doctor, became my trusted advisor and medical researcher. My older sister managed the endless admin — coordinating doctor visits, keeping track of possible outcomes, and generally being a master of logistics. My younger sister provided much-needed comic relief — she named my tumor Ellen. We hated Ellen. My boyfriend (now husband) was unwavering, despite my guilt for burdening him with the responsibility no 23-year-old kid should have — but that’s a story for another day. My parents tried to hide their fear with smiles and reassurance. I did, too.

We put together a rockstar medical team. My doctors were, and still are, my superheroes. I felt like the luckiest girl in the world to have them in my corner.

But that’s the thing. I was lucky.

From identifying the best doctors and securing impossible-to-get appointments, to constantly battling with insurance, I had the emotional and financial support to successfully navigate the black hole that is our healthcare system.

The care I needed didn’t end there though. I quickly realized that my doctors weren’t in touch, which meant I was responsible for coordinating my care and making sure that all bases were covered. It’s surprisingly rare for specialists to collaborate on a patient’s care when they’re not part of the same practice. Sharing records is usually the extent of it, a tedious and outdated process that for some mysterious reason requires 8–10 business days.

I had to be my own advocate. I came prepared with well-researched questions, took copious notes, and, like a broken record, relayed my medical history and treatment protocol from one doctor to the next. Medical care — from diagnosis to treatment — is siloed.

More than anything, the fear and loneliness I felt quarterbacking my care compelled me to contemplate what a seamless patient experience would look like.

After completing treatment, I graduated to what they call “survivorship” — a veritable no-man’s land. Today, 6 years cancer-free, I still find myself confronting questions that require continuous research and management. And again, this is as a lucky patient. I have a degree in biomedical engineering. I was the valedictorian of my graduating class. But I had no clue how to handle the responsibility of my own health.

None of my specialists could advise me (health optimization fell outside the scope of treatment). Left to my own devices, I turned to podcasts and journal articles that explained the role of nutrition in reducing cancer risk. I googled the benefits of everything I ate and adapted my diet accordingly. (If you knew my eating habits growing up, you’d understand why this was such a feat.)

The more I learned, the more empowered I felt. But the internet doesn’t discriminate between science and trend. What I really needed was proper supervision and guidance. Otherwise, there was a chance I would do more harm to myself than good.

Naturally, I set out to find a primary care doctor, a “PCP” — someone I could trust to 1) coordinate my care, 2) serve as a sounding board, and 3) support me in optimizing my health.

But with each new doctor’s visit, I left feeling more frustrated and dissatisfied. And believe me, I tried them all — the traditional, in-network PCPs all the way up to the famous concierge doctors that charge a month’s rent for a not-so-significant difference. In the end, they were all missing the point.

Most of all, these PCP’s lacked a comprehensive understanding of patients’ needs. I knew the only solution that I could rely upon to successfully incorporate this perspective was my own — a doctor’s office designed through the lens of a patient. Finally.

Primary care today has been reduced to a simple checklist — as long as I passed their baseline exams, there was nothing more they could, or wanted, to do. Their body language said it all: wrap up as quickly as possible to get to the next patient. But I had my list of questions. I prodded about nutrition and exercise, asked for their thoughts on extended fasting, the keto diet, acupuncture.

Their responses were vague at best. I was not obese, followed a “healthy” diet and exercised enough. Notwithstanding these fool-proof, ultra-specific guidelines, I realized something was missing. The conventional approach to prevention seemed outdated. But thinking outside the box was clearly unwelcome.

Alas, I became a “difficult patient” — my curiosity and discontent disturbed their formulaic cadence.

Our doctors are not the ones at fault. Challenging the status quo and offering patients a proverbial seat at the table are luxuries most physicians cannot afford. Our healthcare system just isn’t setup for that kind of care.

Why?

The incentives are all wrong.

Doctors are compensated through a fee-for-service model, meaning they get paid per visit. This motivates them to flip their exam rooms as quickly as possible to maximize the number of patients they see in a day. More visits, more profits. Quality of care is not the primary metric.

But the truth is, doctors became doctors because they are curious and do care about treating people. It’s their misaligned revenue model that has denied them of the time, flexibility, and support needed to perform at their best and do what they love.

Prevention requires an integrative approach.

Let’s start with the facts: 70% of disease in the US is chronic (e.g., heart disease, cancer, diabetes, stroke, dementia, autoimmune diseases), and 60% of the population has at least 1 chronic disease. And yet, chronic diseases are often preventable. So how did we get here?

Effective prevention requires an integrative, mind-body approach, a lens most PCPs don’t have. Instead, they stick to what they know: conventional treatments developed by the pharmaceutical industry to mask your symptoms and max their profits. To truly improve outcomes, doctors need to look to the system, not the symptom. This requires additional training and longer visits with patients — time they don’t have.

Everyone is drowning in admin.

This deep dark healthcare hole requires a significant amount of time and patience to navigate. Anyone who’s dealt with a health crisis understands the level of work it entails: consolidating records, sharing records, fighting with insurance, researching specialists, playing phone tag because it’s impossible to ever call your doctor back directly… the list goes on.

Doctors are burnt out and their office staff is swamped. With no one to turn to, patients are left banging their heads against a wall and fending for themselves. An antiquated, bureaucratic and inefficient system has left physicians and patients alike exhausted, neglected and unhealthy.