A Casualty of Incidentaloma

This story could be told by many. You undergo an imaging test for a particular medical reason and then, lo and behold, another condition is discovered. We have all heard the story about a brain tumor being incidentally found – thus saving someone’s life. But that is a rare event. The more common incidental findings are like mine.

I often talk about unnecessary care in presentations about the Choosing Wisely campaign, including cascade effects like incidentalomas, which a systematic review found were present in 22-38 percent of common MRI and CT studies.¹ In my story, I feel a sense of mistrust because I didn’t have the opportunity to have the kind of conversation espoused by the Choosing Wisely campaign.

For six months, I experienced intermittent ringing in my left ear. With some hesitation, I raised the issue with my primary care physician. He ordered an MRI without much discussion with me, presented no data on how frequently vascular problems are detected from a tinnitus condition. I conferred with several other doctors, including one ENT physician, and they all said they would have ordered the MRI. I decided to have the test even without much evidence that it was truly needed.

Having a brain MRI is no piece of cake. For 45 minutes you need to lie still. For the last 10 minutes or so, my arthritic neck was aching and my sensitive lower back started hurting. I also felt a bit of claustrophobia. My primary care physician called later to report the good news that I had no vascular or brain tumors. There was a “but” though. I was told I have an arachnoid cyst the size of a lacrosse ball and a smaller pineal gland cyst. The physician told me I shouldn’t lose any sleep over this, but referred me to a neurosurgeon.

The next part of the story is quite predictable., I went to the neurosurgeon, who ordered a repeat brain MRI in six months to see if after 67 years this congenital anomaly would suddenly begin growing. “I am 99% certain it’s no problem, but I want to be sure,” she told me. She went over the things that would happen if the pineal gland cyst began growing – extreme sleepiness and incontinence. Again, I had a physician direct me to do something without asking about my preferences and my risk tolerance, or discussing the benefits, risks or costs. Absolute certainty was the only goal, and not my preference.

Can someone provide me with data and evidence of these kind of cysts growing over time? Why do I have this information about these cysts that now forces me to worry about them for the rest of my life — for what? And at what expense? I can only empathize with patients who have had a similar incidentaloma experience and feel at odds with the medical system.

What should have been a conversation that enabled me to make a decision was instead someone telling me what I should do. I need information about benefits and risks, the evidence, and other options. Then I should decide on my care based on the best information presented — particularly when there is little guiding evidence. Conversations like those are trust builders.

Daniel B. Wolfson, EVP & COO
ABIM Foundation

[1] O’Sullivan JW, Muntinga T, Grigg S, Ioannidis JPA. Prevalence and outcomes of incidental imaging findings: umbrella review. BMJ 2018;361:k2387.