- 36 years old
- Diagnosed at either 32 or 33 (Biopsy came back malignant at 32, PET scan showing metastatic de novo at 33, so it depends on what you go by as diagnosis. It was a fun birthday week!)
- Manhattan, New York
- Brain mets
- Brain MRIs every 2 months; PET/CT scans every 4 months
- Scan-free intervals: 2 months at a time
If there was a slang dictionary for cancer patients, to me the definition of scanxiety would read: “The anxiety, fear, and/or stress that patients feel while waiting for impending cancer-detecting scans, tests, or their results.”
As both a metastatic breast cancer patient and a teenage leukemia survivor, I am all too familiar with this feeling. I have had to have almost every possible tool to detect cancer, including PET scans, CT scans, MRIs, spinal taps, biopsies, ultrasounds, and x-rays. I have had pre-planned cancer detecting tests, tests scheduled at closer than normal intervals based on the results of the last one, tests done in urgent care based on unusual symptoms, and scans done during hospital stays.
Out of all the cancer testing tools I have had, the easiest ones to cope with are the regularly scheduled ones. As a metastatic breast cancer patient with brain involvement, I have PET/CT scans every 4 months and a brain MRI every 2 months. Scans that are pre-scheduled and anticipated, I can plan for and know that they are just part of the horrible routine that is metastatic breast cancer; scan, hope for the best, treat, and hopefully repeat. However, I never know which ones of will show “stable” or “regression,” the two best things a metastatic patient can hear, or “disease progression,” the scariest scan outcome.
I definitely feel scanxiety, but for me, it usually doesn’t set it in until the night before a scan. I just try to distract myself with bad TV, call a friend, read a magazine, and calm my mind. When I arrive for my scan and while I am in the machine, I feel an unusual sense of calm. Somehow, I am just able to relax. I tend to focus more on my weekend plans, things I have to do at work, and more mundane things than the actual results.
I usually go right from having my brain MRI to meet with my neurologist to get my results. Sometimes I get my PET/CT scan results from my oncologist right after, and other times a day or two later over the phone. After they call me in from the waiting room to the patient room, or when my phone rings and I see that caller ID, that is when my scanxiety goes through the roof. I can literally hear my heart pound through my chest. I tell myself that I have literally done everything in my control to prevent cancer progression; taken all of my Xeloda and Tykerb pills, received my Herceptin infusions, gone to all of the doctors’ appointments, and reported any unusual symptoms right away. I also remind myself that if the scan does show progression, it was beyond anybody’s control and there are still a lot more drugs and clinical trials left in my arsenal to try.
I just look at the doctor’s face or listen to her voice and hope for the best so we can continue as is and say, “Until next time…”
Rebecca Scheinkman manages the outreach and marketing for www.theunderbelly.org, an online space for women and men to read and contribute honest, raw personal accounts of life with breast cancer. She is also a patient advocate member of the Metastatic Breast Cancer Alliance and a fundraiser for the Breast Cancer Research Foundation. You can follow Rebecca on Instagram and Facebook.