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Advocacy

Patients with Brain Metastases Deserve Better—A Hard-Won Perspective

*July 2023*

This article is written by Laura Greco, a lung cancer patient and advocate.

It has been observed that “the development of brain metastases is one of the most feared complications of cancer due to the substantial neurocognitive morbidity and a grim prognosis.”1 In my own case, when I learned that my lung cancer had metastasized to my brain in 2016,I shared that fear.I remember that my husband and I took special pains to sit down with our 2 sons to explain the situation, knowing, as we did, that when people at their elementary school learned of my new medical situation, our boys would likely see the dire nature of things in other people’s faces.

Cancer in the brain is frequently used to justify arguments in favor of legalizing euthanasia. Cancer in the brain is seen as “the end of the road.” And yet, I’ve been living with brain metastases since 2016 thanks to advances in scientific research to combat this very common turn in lung cancer. I’ve traveled internationally and cross-country with my family. I’ve been a lung cancer advocate at the state, federal, and international levels. Here, I hope to convince you that we should be prioritizing cancer research, specifically lung cancer research involving brain metastases. Unfortunately, the fear of brain metastases is fully justified. Progression of intracranial disease is the cause of death in 50% of cancer patients.

Patients with lung cancer have particular reason to worry. They have a 1:2 chance of developing brain metastases at some point, and certain types of lung cancer are even more likely to spread the disease to the brain.2 Indeed, patients with lung cancer are the most frequent of all cancer patients to experience progression to the brain.

If we can expect that lung cancer will progress to the brain half the time, why has research and care lagged so far behind? I believe that the reasons for this lag can be categorized into 3 areas: poor research, poor care, and poor treatment options.

Poor Research
It is generally agreed that there are no good preclinical to understand lung cancer with brain metastases, which means that there is not even a foundation on to build the needed research in this area. Researchers are also identifying a microenvironment in the brain, further complicating studies.

When clinical trials do study lung cancer, they typically exclude patients with active metastatic disease in the brain. Excluding those with brain metastases from clinical trials may make the research less complicated, but it in no way reflects the lived experience of patients and clinicians battling this disease. And, even if trials include people with brain metastases, there are often no specialized trial arms, which limits their usefulness in analyzing outcomes. Read more.