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Scanxiety: The Brain Edition

In metastatic breast cancer, the brain MRI is often a special request for what you don't want but truly need.
PUBLISHED March 25, 2019
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

There are two camps when it comes to anxiety and cancer: those who have it and those who don't. I am not one of the never-anxious. I've spent time over the past four-something years since my diagnosis of metastatic breast cancer perfecting techniques to minimize anxiety at crucial points in my treatment that has worked so far.

"So far" is the important information here. That's because about three months ago, during my last office appointment with my oncologist, I brought up something that had been weighing on my mind: the question of the brain MRI.

Because I have metastatic breast cancer, specifically HER2-positive breast cancer, I am at risk for developing brain metastases. My current treatment, which has been largely unchanged since my very first visit to the chemo chair over four years ago, is not one that typically crosses what is known as the blood-brain barrier. That is, even though I may look great from the neck down in my regularly scheduled CT scans, the drugs are unlikely to be doing anything for me intracranially (inside the skull) if cancer has made it there.

Added to that is the unfortunate fact that HER2-positive breast cancer is associated with brain metastases and though I know this and my oncologist knows this (as do cancer researchers and oncology associations), there is no standard of care for having a brain MRI. The American Society of Clinical Oncology (ASCO) recently reaffirmed their guidelines for oncologists treating people with HER2-positive metastatic breast cancer, saying in part that, "Clinicians should not perform routine magnetic resonance imaging to screen for brain metastases, but rather should have a low threshold for magnetic resonance imaging of the brain because of the high incidence of brain metastases among patients with HER2-positive advanced breast cancer."

Yet I need both hands to count the women I know with metastatic HER2-positive breast cancer who've resorted to begging, crying and lying about symptoms before a brain MRI has been ordered. Too many times the MRI results have come back with a diagnosis of brain metastases. This tells me that, at least anecdotally, ASCO's "low threshold" needs clarification so that all people diagnosed with metastatic HER2-positive breast cancer receive them, not just those who have done their research and have a willing oncologist, and that these scans are done in a timely and routine manner that minimizes stress.

When I bring up the topic of a brain MRI with my oncologist, I start to sweat. How much do I want this brain scan? Am I willing to risk the relationship I have with my oncologist to get one? If she says I don't need one, what will I do? I can speak up for myself, but this particular "ask" required finesse that added to the pressure I felt. I didn't want to come across as angry or accusatory; I didn't want to lie about symptoms I don't have; and I wasn't going to start begging.

I spoke as succinctly as I could about how I knew women with diagnoses similar to mine who developed brain metastases and that I knew my own HER2-positive status increased that possibility. I didn't have to say more—my oncologist immediately asked if I was asking for a brain MRI and said that she would order one.

That was three months ago and in four weeks, I'll get that brain MRI. The anxiety surrounding it has been steadily growing. It is both the thing I don't want and the thing I need. My friends with brain metastases point out that it is insensitive to say cancer spreading to the brain is what I most fear—and it is. I know it is—yet the distress surrounding this possibility is real.

I am taking a trick from my early days with a Qigong teacher I sorely miss and am practicing letting that fear and anxiety scroll across my brain without latching onto it. Acknowledging it but not dwelling on it. It isn't easy. I have years of practice with CT scans and the scanxiety they can provoke, but this time is different because the implications of brain metastases and its treatment fit neatly into the category of things I cannot control. I tell myself that despite the anxiety, I will soon have the answer to the question of whether or not the treatments that have worked so well below my neck have also kept my brain safe.

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