comscoreScanxiety and Metastatic Breast Cancer

Scanxiety and Metastatic Breast Cancer

Hear from women who talk about what scanxiety feels like for them and strategies they’ve discovered to help get them through it.
 

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to a cancer imaging scan, during the scan, and while waiting for results. This blog section features the voices of women who talk about what scanxiety feels like for them and strategies they’ve discovered to help get them through it.

 

April on scanxiety

I don’t fear the scans themselves. In fact, I have had them so frequently the last three years, that I often manage to nap while it is going on. It’s the waiting.

April:

  • had her original diagnosis age 31, and was diagnosed metastatic age 36

  • is from Visalia, Calif.

  • was diagnosed with bone metastasis throughout body

  • has a PET scan every three to four months

I typically do not receive scan results for 3 to 4 days following my test. During that time, I picture every possible worst-case scenario, even if I feel relatively fine. The fear is what makes it hard to function, because even if you are pretty sure this time will be okay, you know the time is coming when it won’t be. I try to deal with it by staying busy and plan things to do so I am not just sitting there thinking. The thoughts creep in and cause the most helpless feeling as you’re at the mercy of the universe.

I am fortunate. My oncologist will sometimes pop his head into the room while I am waiting for him to give me my results and say “looks great, I’ll be in momentarily.” The relief that floods through my body weighs me down before giving way to euphoria. It’s an indescribable feeling. Hearing the opposite is also hard. The word progression may be the most hated in my life and those of my friends. Scanxiety is doubt, fear, terror, despair, and hope all tied up into a big knot. That knot lives within you, hiding for those months of scan free intervals, but returning stronger and more influential each time. My way of coping with it is to continue living my life as fully as possible, giving cancer the middle finger as I go about my day.

April Doyle managed social media 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 wrote about her own experiences at The C Life. April passed away on September 12, 2020.

 

Rebecca on scanxiety

If there were 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.”

Rebecca:

  • was 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!)

  • is from Manhattan, N.Y.

  • was diagnosed with brain metastasis

  • has brain MRIs every two months and PET/CT scans every four months

  • enjoys scan-free intervals two months at a time

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 four months and a brain MRI every two 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 managed 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 was also a patient advocate member of the Metastatic Breast Cancer Alliance[VL6] and a fundraiser for the Breast Cancer Research Foundation. Rebecca passed away on December 18, 2018.

 

Susan on scanxiety

Scan day is by far the most unnerving and frightening part of being a metastatic patient. It’s when you find out if the cancer has progressed and outsmarted your treatment plan, which means a more toxic plan and one less tool in the box to choose from. It could also mean less time in between scans which means more anxiety and more fear.

Susan:

  • was diagnosed at 43

  • is from Rochester, N.Y.

  • was diagnosed with bone metastasis to the spine and ribs

  • has a PET and CT every three to six months depending

  • has a brain MRI every six months

  • enjoys scan-free intervals of thre months at a minimum, six months at a maximum

I am always aware of my future scan dates when I’m checking out of whatever scan I just had. The date is always in the back of my mind but the anxiety doesn’t really kick in until about a month before the actual scan date. That’s in large part because of the travel plans that need to be made in preparation for the scan. I live in western New York state and receive treatment and checkups locally, but I have my scans and other checkups at Memorial Sloan Kettering Cancer Center in New York City where my primary oncologist is.

I try to keep busy and continue to do normal work and household tasks in the weeks leading up to scan day. However, the nights begin to be longer and sleep becomes more elusive. I begin to emotionally check out with friends and family the week before as I mentally prepare for the possibility of bad news. This is a coping mechanism I have come to weave into my DNA. I don’t ever want to be caught off-guard with a bad report that I know will eventually come. I need to be mentally prepared for it so I can hit the ground running and be in a place where I can focus on a new treatment plan. If I am emotionally crushed by bad news, I won’t be able to focus on what I need to do to keep moving forward. In the few days before and the day and night before I listen to a lot of music and playlists that I have created to keep me in a good headspace. I have a few superstitions that I will keep to myself for scan day, but suffice it to say that so far, they have worked and the scans have come back unremarkable.

I just had an emergency brain MRI and my next PET/CT is in two months, so as I come down from a huge hill of overwhelming fear and anxiety, I’ll be charging up that hill again soon. It’s a never-ending roller-coaster of coping mechanisms and anxiety meds, but I’m thankful for my playlists.

Susan Rahn is the founder, publisher, and editor of www.theunderbelly.org, an online space for women and men to read and contribute honest, raw personal accounts of life with breast cancer. Susan is an advocate for Compassion & Choices in New York State. She chronicles her experiences with metastatic breast cancer on her blog, StickIt2Stage4.

— Last updated on February 10, 2022, 1:13 AM