Fighting the System - My Battle Against Outdated Dermatologic Care

Two weeks after my melanoma diagnosis, I arrived at Stanford's Skin Cancer Clinic. The appointment began with another full body check, during which they found another concerning mole behind my right ear. Then came the news that my surgery was scheduled for that same afternoon—a whirlwind of information and decisions with barely any time to process.

When I met with my surgeon, she started explaining the procedure by drawing directly on my skin. She marked a 1cm circle centered on my 4×3mm mole, then added a 1cm margin around it—essentially planning to remove a 2.5cm diameter circle from my nose. What she said next left me physically shaking.

"I'll probably need to do a 'double flap' where I'll cut tissue from both your cheek and forehead to create a graft that will grow into the excised area," she explained. "It will take about a year to heal, and you'll likely need one or two plastic surgeries afterward to get the best results."

I immediately questioned this approach. "Why remove so much tissue for such a small lesion? We don't even know the depth yet. What about Mohs surgery?"

Her response revealed volumes about the system I was now navigating. She explained the concept of "standard of care"—essentially, that wide excision with significant margins had been the practice for decades. She added that Mohs wasn't standard for Melanoma because the histopathology takes hours per slice and could take more than a day for multiple slices.

What struck me most was her candid admission: surgeons aren't paid more to do Mohs versus regular excision, despite Mohs taking significantly longer—two hours for traditional excision versus potentially multiple days for Mohs on a Melanoma. The incentives were completely misaligned with patient outcomes.

After pushing back, I managed to schedule a Mohs surgery ten days later. Before that, the surgeon agreed to do a deep biopsy to determine the lesion's depth. The results showed a depth of 0.5mm—meaning my Melanoma was still in Stage I and hadn't reached my lymph nodes. This information was crucial and reinforced my decision to advocate for Mohs.

The Mohs surgery removed an area of just 0.8×0.9cm instead of a 2.5cm diameter circle—preserving 85% of the tissue that would have been removed under the "standard of care." No skin grafts were needed, and reconstruction became, in the surgeon's words, "a piece of cake."

Illustration of Standard Wide Margin excision Vs the actual excision that was performed on my Melanoma

During my recovery, I developed a close communication pattern with my surgeon. I sent daily photographs of my healing scar, monitoring every change, noting how my skin responded to different bandages (it didn't like them), and documenting the healing process meticulously. When I asked if this level of communication was normal with her other patients, she mentioned it was unusual to receive daily updates during recovery.

This surprised me. How could monitoring healing not be standard practice? Each person's skin heals differently, and close tracking seemed essential to minimize scarring and avoid unnecessary additional surgeries. Yet the system wasn't designed for this kind of attentive follow-up.

Every step of my journey revealed a healthcare system that wasn't data-driven, favored expensive and invasive procedures, and used a one-size-fits-all approach. I underwent multiple appointments over the first three months and eventually had a minor surgery to smooth out the scar. The results were excellent—my scar is now barely visible—but I attribute this success largely to my active involvement throughout the process.

This experience gave me a reality check. I now place skin health at the top of my priorities, visiting dermatologists every three months initially, then twice a year. I constantly check my moles, wondering if new ones have appeared or if existing ones have changed. I wonder if my dermatologist will identify any concerning changes early enough.

And every year, 3.5 million Americans join me in this uncertain journey—many without the knowledge, resources, or confidence to challenge the system as I did.