The cancer diagnosis that wasn’t

“There isn’t a ‘good’ way to find out you have cancer,” a medical student commented on this case, “but there are certainly bad ways.”

Dr. Kathryn Ko, a New York neurosurgeon known on Figure 1 as @docambidexter, shared this remarkable story of a 45-year-old woman who had been experiencing vertigo and upper neck pain. The patient ended up in an MRI, where she was directly asked “Do you have cancer?”

This detail shocked the Figure 1 community.

One healthcare professional said:

I’m stuck on whoever said “do you have cancer?” Thoughtless and inappropriate. From a patient perspective, during a brain scan is no time to be fielding questions in the first place. To toss out that bomb is truly shocking.

By the time the patient made it to Dr. Ko, the diagnosis was still cloudy but the patient’s outlook couldn’t have been darker. As the neurosurgeon wrote:

Pt [patient] was shocked, left facility in tears. One week later she read the report which said “rule out malignancy”. Specialist consult discussed possibility of multiple myeloma. Treatment in this location dismal. Pt underwent 2 wks of further tests. She decided during this time to forego treatment if the dx [diagnosis] was myeloma. Progression results in loss of cranial nerve function, including swallowing, etc. How would you handle this if it were you and the clinical options were limited?

The discussion of this potential diagnosis centered on the need for more tests to confirm the diagnosis and a general consensus around avoiding invasive treatments. As a nurse practitioner asked the neurosurgeon:

Can I throw the original question back to you, or at least glean some more knowledge? IF, the dx were MM [multiple myeloma] with mets [metastasis], what options would you choose. Are chemo/etc. palliative at all? Not even so much at extending life, but making it easier to live out? I have to say I think I would forego the treatments. But you just never know until it’s you.

Dr. Ko said:

If this were me…and this exact scenario happened & I was told I had multiple myeloma or mets to the clivus, I’d get the work up done to confirm, in other words…I’d get busy with finding out what’s going on…that is after I recovered from the shock of it. If MM were confirmed, I’d make plans to have a peaceful journey back from whence I came. Others might choose different, I respect their path

But as the case developed on Figure 1 and Dr. Ko shared updates, the diagnosis improved dramatically. An otolaryngologist’s question helped reorient the discussion:

Are you sure it’s MM? The patient is on the young side without other symptoms. Clivus is unusual location. Have they had electrophoresis for m protein and a bmb? If this is the only site of possible plasmacytoma, biopsy is still necessary as cordomas, chondrosarcs and t cell tumors all look similar. Further, mm patients with the haplotype can develop other malignancies

To which Dr. Ko responded:

Blood tests and work up are negative for MM and mets work up are negative…Pt did a lot of research and 2nd opinions during this period. Her docs also sent the film’s to outside specialists…more soon

And eventually the results came back:

Turns out to be fibrous dysplasia…benign bone lesion…slow progression. Surgery was not practical in this case, so the patient will stay under observation.

Following the prolonged case and its unexpected outcome was emotional for many of the healthcare professionals on Figure 1. As one nurse said, “I can only imagine the emotional rollercoaster this poor woman has ridden.”

And as Dr. Ko said of the patient: “She learned a lot about herself.”