A Letter to Patients and Providers

From a sarcoma center of expertise

Obligatory - This is not medical advice

Welcome friends! Briefly here, I’ll attempt to define here my aspirations for this substack. Let’s set the lay of the land. As it stands, there is a significant distance between what most of us oncologists, especially those who are subspecialized, know and what’s presented or available to patients. Personally, I don’t think that it needs to be that way. While the average physician has undergone years of training and honed their skills with thousands of hours of practice, reading, and academic discourse, the basic tools aren’t elusive. These tools are accessible and can be presented to our patients with a little time and communication. Unfortunately, our healthcare system hasn’t incentivized this, but I digress…

So what are we doing here exactly?

I’m trying to create the equivalent of an ongoing dialog that’s approachable to patients and providers alike. Sarcoma is a topic that’s very subspecialized. Community oncologists will generally only care for a handful of individuals with sarcoma over the course of their careers. I want to provide a resource that’s easily digestible, but also capable of being applied. Understand that this substack will not be medical advice, rather, a resource that can be used to frame discussion. My personal belief is that the best medical care is delivered by empowering all stakeholders with an accurate portrayal of existing information. This includes what’s known, unknown, and a reasonable deliberation about the limitations of what’s known.

How are you going to do this?

I’m often told that I have a ‘unique’ means of explaining difficult or nuanced topics. I will be reviewing, one at a time, either diagnoses, treatment paradigms, clinical trials within sarcoma, processes in sarcoma, and other aspects that could be of interest to me or an audience. Along the way, one can be certain that there will be some miscues, imperfect analogies, etc.. Nonetheless, my sense is that, even though some of the portrayals may not stand up to strict scrutiny, they would be more robust than what currently exists. We’re not trying to make everyone a subject matter expert. We’re hoping to make something that patients and providers will be able to use as a springboard for discussion and understanding. I’ll do my best to include references for each of the topic covered, figures, and diagrams.

Let’s get started

Over the coming weeks you’ll see new posts accumulate regarding modalities of treatment, common diagnoses, and ongoing studies. It may be slow at first, but we’ll quickly gain momentum as we go. Stay tuned