COMMENTARY

The Oncologist's Role With Savvy Patients

Mark A. Lewis, MD

Disclosures

July 21, 2020

This transcript has been edited for clarity.

I am Mark Lewis, a contributor at Medscape and the director of gastrointestinal oncology at Intermountain Healthcare in Salt Lake City.

Last month, without even leaving Utah, I was able to participate in the American Society of Clinical Oncology (ASCO) annual meeting, which this year was an unprecedented virtual conference. Thousands of us were able to gather online to discuss the latest findings.

I have a lot of thoughts about the conference. In some ways it established a new precedent for how we might interact going forward. I think the perfect model is probably some hybrid of virtual and in-person interaction. There are tangible and intangible benefits to getting together and seeing each other face-to-face; this really fosters networking and progress.

That said, I applaud ASCO for quickly pivoting to this model with only a few months' notice in the midst of this pandemic. Ultimately, the health that was protected — and maybe even the lives saved by not gathering in person — far, far outweighs any inconvenience or technical glitches that we might have encountered with an online conference.

As many of you know, I have MEN-1 (multiple endocrine neoplasia type 1) syndrome and have experienced neuroendocrine tumors (NETs). For many years, progress in NETs has been hampered because they are considered rare, and it's been very difficult for patients to match themselves with proper therapies or clinical trials.

I was very privileged to be asked to speak at ASCO this year, not so much as an oncologist but as a patient. ASCO gave me the title for my talk: "Lost in the Woods: A Patient's Perspective on Finding Novel Therapies." I'll be honest — at first I didn't really love the title because I didn't like the notion that patients were lost and perhaps even misguided.

But the more I thought about it, the more I realized that that is the reality that many of us face. I had to almost recuse myself from my oncologist role. I realized how enormously privileged I am to understand the lingo and to have been trained in the vocabulary and the search tools that we have to find emerging protocols.

I started [my presentation] with an image of a path diverging in the wood and quoted Robert Frost's poem, "The Road Not Taken." But that was overly simplistic because it broke down the patient's path into a bifurcating state, and that is not true. The analogy I invoked quickly after that was of the labyrinth. Imagine being trapped in a maze with this monster, the Minotaur, and you have to escape. I think that is more likely the contemporary challenge for the patient with cancer: They are up against this monstrous foe. There are not just two paths out, but myriad. How do they pick the right one for them?

Then I showed the search tools that are at our patients' fingertips these days, starting with clinicaltrials.gov. I pointed out that if you just search "cancer" and no other defining search terms, you get 75,000 results. How is any patient supposed to distill that down into a manageable number?

I was also asked to comment on some new, emerging therapies, very exciting for cholangiocarcinoma, driven by fibroblast growth factor receptor (FGFR2) mutations and for RET-driven tumors. RET has sort of been the proto-oncogene par excellence. It's long been associated with thyroid cancer, particularly medullary thyroid cancer, but now it's been found through deeper and deeper genomics in a variety of tumors. The two studies I was asked to review looked at how to take traditional histopathologic boundaries and either refine them or break through them with mutational profiling.

My point was this: Patients are increasingly savvy. These days it's hard to imagine a breast cancer patient who would not know their hormone receptor or HER2 status. I can easily envision other solid tumor patients being well versed in whether they have something that can be exploited by targeted therapy. For instance, a cholangiocarcinoma patient knowing whether they carry an FGFR2 mutation or an IDH1 mutation. In the era of immunotherapy, I think patients are increasingly going to be aware of their PD-L1 status. That is not the be-all and end-all, but as we know, it's the indication for many immunotherapy drugs. Perhaps patients will come to know their tumor mutational burden, as we do, from reading reports of their next-generation sequencing. What I'm getting at is, if you put in "cholangiocarcinoma" and "FGFR2" into clinicaltrials.gov, it returns a very manageable 21 results rather than 75,000 results, and I think that is where we're headed.

While we should not underestimate our patients' tech savvy and without condescending to them, I do think they will need a little bit of guidance to ensure that they are not lost in the woods. We need to guide them out of this thicket of studies and put them on the right path. Oncologists need to be willing to have those conversations in clinic. One of the best things that happens in my practice is when a patient comes in with their own clinicaltrials.gov results and together we go through them and separate the wheat from the chaff. We decide what is right for them and we rule out studies for which they would be excluded or inappropriate. I think that is the way forward together.

Are patients potentially lost in the woods? Yes. But I think it's our job to commit to walk together down one path or the other and move forward. With that, I'm going to close on a very hopeful note. I hope everybody enjoyed the virtual meeting and I look forward to seeing some of you in person at some point in the future.

Mark A. Lewis, MD, is director of gastrointestinal oncology at Intermountain Healthcare in Salt Lake City, Utah. He has an interest in neuroendocrine tumors, hereditary cancer syndromes, and patient-physician communication.

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