Editors’ Note: At the author’s request, JoPM is publishing this piece under a pseudonym. — TG and JG

Abstract

Keywords: Breast cancer, MRI, physician-patient communication, participatory medicine, access to data.
Citation: Richards S. Me, Myself, & the MRI. J Participat Med. 2013 Jan 9; 5:e1.
Published: January 9, 2013.
Competing Interests: The author has declared that no competing interests exist.
 

One would think that living in New York amidst the incessant honking of taxis, blaring sirens, and jarring jackhammers, you wouldn’t mind the deafening sounds experienced during an MRI. Think again.

An MRI (magnetic resonance imaging) uses a powerful magnetic field, radio frequency pulses, and a computer to produce detailed pictures of internal body structures. It’s used in addition to other modalities for those that are high risk for breast cancer.

At 9:00am check-in I’m greeted by a cheerful receptionist who hands me a stack of forms to complete. It’s probably my fourth time here for preventive diagnostics, but I fill them in again. Five forms and a case of writer’s cramp later, I am taken upstairs where the real fun begins.

I peer around the waiting room, where stacks of old magazines are scattered across the coffee table and three women, all double my age, surround me with looks of sympathy. Breast diagnostics typically start at 40. I began at the ripe old age of 25, which is 10 years younger than when my mother was diagnosed (she died at 42). On an annual basis, I undergo diagnostic hell — what I call my yearly tune up. I shouldn’t complain, as I’m blessed with stellar health, but fear of the unknown and memories of cancer snatching my parents well before their time keeps me up at night every once in awhile.

I’m escorted to the changing room where I’m instructed to disrobe, remove all jewelry, and put on a shapeless hospital gown the color of puke. What’s the motive behind gowns that scream “I’m sick,” even when we’re not? I’m taken to a small room where a hospital band is put on my wrist. An intravenous line is inserted into my arm to allow for injection of the contrast, gadolinium, which is used to enhance the appearance of tissues/blood vessels. I don’t know what true physical pain is in that I’ve never broken a bone, had a cavity or even the chicken pox, so the IV is a pretty big deal.

“Can I take pictures of the machine or video the procedure with my phone through the small window? ” I ask.

“Our apologies, but you need special permissions to take pictures of any of the machinery or video any of the procedures,” I’m told.

Lights go dim; camera is put away, and no action or movie debut today. Bummer.

I’m taken into the room where what I call “the big bad wolf” is ready to pop an eardrum or two with its headache-inducing clamor. Gown removed, I lie facedown onto a padded scanning table where my head is placed into a massage chair face brace and my breasts are placed into a hollow depression in the table. Covered in blankets, the show is about to begin. The jaws of “the big bad wolf” take hold and in I go. I’m swallowed by the dark and frigid hollow tube with a panic button placed into my hands — just in case.

When you read up on an MRI, the sounds are casually described as a thumping or humming noise. But what sounds like — gunshots? Fireworks? Bullhorn to the ear? — blares for about 45 minutes, only to be interrupted briefly for a shot of a cooling contrast to the arm. My arm feels heavy, like a balloon about to explode. My throat and chest tighten and I take in long, deep breaths. The earplugs are ineffective from muffling the jackhammer sounds and my sternum hurts from the contraption beneath me, but I dare not adjust. I’m told that any slight movement may result in the procedure having to be repeated … on another day. No repeat performance is worth the hassle, even if it results in a black and blue sternum. Then a light at the end of the tunnel, or rather nurse at the end, angelically whispers that the procedure is over and rescues me from the big bad wolf’s jaws, as she slides the table out. All in all, the procedure isn’t that bad. The most uncomfortable part for me was honestly the loud hammering sounds. Next time, I just have to make sure I adjust into a more comfortable position before the procedure begins.

So I mentioned that I’ve done this a few times, and there were two things that were different this time around. There’s a sign posted that advises I can get a copy of my images on a CD, on the spot — no charge. They’re proactively giving me access to my data. Brilliant!

Typically, the images are read by the radiologist and sent over to my breast prevention specialist, and she calls me with results a day later. This time, I get a voicemail directly from the radiologist at the facility one hour later. My eyes well up holding back tears, as my heart feels as if it’s going to explode from out-of-control palpitations. I return the call and the receptionist patches me through immediately. Obviously they’re expecting me. Memories of my mother on life support, with four young and confused kids at her bedside, flash before my eyes.

CANCER has finally come knocking on my doorstep. I’ve lived and breathed everyone else’s cancer through my parent’s experiences, as well as through my career in cancer research, education, navigation, and advocacy. I know exactly what CANCER is, what it does, the path it takes, how people react to it, but I don’t know what it’s like to have CANCER.

The radiologist speaks slowly as she confirms my name and procedure. “Thank you for calling me back. I wanted to call you with the results of your bilateral breast MRI that you had here at our facility today. Well, I read your images and we will send over a report to your referring physician. ”

Get to the point. Tell me what’s wrong — I want to scream, but I remain silent.

She continues,”I did want to let you know that everything came back perfectly fine. Do you have any questions for me?”

At that point, I felt as if I had been underwater for about 5 minutes drowning in the unknown, and I gasped as I came up for air.

“This is the first time the radiologist has ever called me directly. Is this something new? I thought you were going to tell me I had cancer,” I exclaimed.

“No, nothing new,” she replied.” We are not required to call, but I always call my patients with results as soon as I read the images. I’m sorry I alarmed you.”

I thank her for being proactive and as I walk down the city streets with a bit of skip to my step, I think to myself the participatory medicine movement is spreading, a contagion where it’s only a matter of time before it becomes a household name. Like windblown seeds of a bloom dispersed around us,”dandelion snow” is making its way through healthcare and it’s only a matter of time before that check in phone call to convey good news or access to results becomes “just an average day in the life of a patient.”

Copyright: © 2013 Sarah Richards. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.