What I never consented to

The worry of incidentalomas

One of my first incidentalomas was found after surgery for an NF related malignant peripheral nerve sheath tumour. I woke up without sensation from the top of my right shoulder down through my hand and fingers. An exploratory MRI scan detected a growth near the pineal gland in my brain. Questions were raised about metastasis, new malignancy, and more, even though none of this explained the sensory loss. Every six months thereafter, lying as still as possible in the loud MRI scanner, I wondered and worried about the growth in my brain. After years of biannual scans, I located a childhood MRI scan that confirmed the growth had been there all along and was likely a benign pineal cyst. Thus began my journey with incidentalomas.

Ten years after my last recurrence of the cancer was removed, I volunteered for a full-body MRI scan as part of a study. The scan identified a lesion in my right axilla near the site of my many surgeries and radiation field. My doctors ordered a follow-up MRI three months later, which showed growth of the lesion and led to a fifth surgery in this area. The lesion turned out to be skeletal muscle with atrophy, fibroadipose tissue, and fat necrosis and very fortunately was not a cancer recurrence. However, CT scans I’d had in preparation for the surgery found thyroid nodules not previously seen. Additional investigations ensued, as did doctors’ visits, further studies, and continued worry. The nodules turned out to be common and nothing of concern. With each benign finding, I was initially shocked and overwhelmed with gratitude. I thanked my team of doctors and thought of friends who did not survive my rare type of cancer. But each incidentaloma resulted in more tests, more loss of function, added worry, and hardship.

Reframing the consent process

Some will say it is not possible to address every potential outcome in consent. However, a simple reminder of the possibility (indeed, high likelihood) of incidental findings—and what we might do to address them—would have been helpful. My choices might have been the same, but I believe we would have felt better prepared for whatever was to come. The consent process should educate patients on the benefits and risks of treatment and should include discussing the possibility of incidental findings and possible responses, including watchful waiting rather than further tests and more surgeries. I share my story because I wish my doctors had discussed with me these possibilities during the consent process.