Scanxiety
Let me be very clear: the opportunity for a scan is a privilege, one outside the realm of possibility for millions of people around the world. Scanners possess a near-miraculous ability to peer inside the body, and their machinations have become a critical part of cancer staging and treatment. And yet these procedures are so famous for their nerve-wracking qualities that a term to describe their use is common parlance in the cancer community – scanxiety. Every part of the process produces an overflow of apprehension, from gaining insurance approval to the experience of the scan itself, followed by what seems an interminable wait for the results.
Scans are expensive and few will proceed until insurance has authorized their use. Often the insurer appears to stall the approval, creating havoc in appointment scheduling. I’ve had scans canceled, rescheduled, and canceled again because insurance demanded more information before granting their blessing. In my experience, insurance companies rarely deny scans outright, and yet the oncology teams spend copious amounts of time begging for approval for something a highly trained and experienced physician deems a medical necessity. Nurses and PAs have often worked overtime to push through an order on my behalf.
On several occasions, my oncologist wanted an MRI to assess treatment progress but knew there was no chance of approval only months after the last one and decided the best option was to wait it out. It seems timing is everything. Once, my doctor ordered an urgent scan and scheduled it for the following day. We cheered her ability to get me in so quickly because it seemed too good to be true. It was. Insurance didn’t consider it urgent and wanted more details before issuing their decision. When I protested the delay, the insurance company representative responded, “Unless you are going to die tomorrow, it’s not urgent.”
This wasn’t a request for a ride aboard The Good Ship Lollipop, and I don’t know anyone who enjoys the experience of a scan. Although insurance companies need to manage expenditures, the cost of healthcare is completely out of my control. In the cold light of a cancer diagnosis, my goals are crystal clear; I want to stay alive and I’ll sign on for whatever it takes. I was knee-deep in scanxiety before any scan had even been approved.
Waiting for a PET scan, alone in a semi-darkened room, I tried to meditate. Attempting to quiet the mind while waiting for a test that will reveal whether cancer has surged within the body is a set-up for failure, or at least an indication that I am eons away from achieving meditation nirvana. Eventually, I was allowed to call my sister under the condition that I didn’t look at the cell phone, even with my eyes shut. The scan itself is tolerable because there is no enclosed tube although it takes nearly an hour to complete. Lying on my back while being shuttled through another donut-shaped machine, I watched numbers on the machine light up and shuffle like a deck of cards, having no idea what any of it meant.
Then the hard part begins– waiting for the results. As truth-telling machines, scan reports deliver unvarnished results. Those who are newly diagnosed wait for news about where they will fall in the staging matrix. Many patients with Stage IV disease measure time in the weeks or months between scans, planning only as far ahead as the next procedure. For me, the days between the scan being completed and the receipt of the results are a cross between holding my breath underwater and surfing a wave in sunshine. The results could indicate a devastating progression and a need to double down on treatment. Fear often pokes me awake at night, whispering in my ear of worst-case scenarios. Will tomorrow bring a call that changes my life forever? Was the cough worse or was I overly tired yesterday? With my mind drowning in misgivings, I fight for control and push to the surface for a breath of fresh air.
Alternatively, there is a freedom and lightness in not knowing. I choose to believe, with no current evidence to the contrary, that a healthy future lies ahead. Everything about the world is more intensely beautiful; its value heightened by my magnified awareness of its fleeting nature. The sun glowing as it drifts through leaves, the laughter of children, a purring cat curled up on the couch, chats with treasured family and friends. These may be my last “normal” days before contending with life-altering news and I want to savor ordinariness for as long as possible. I refuse to allow anxiety to suffocate joy. Hope skims the glassy water, shimmering in golden light.
When the call finally comes, the voice on the other end of the line tells a lot about what is to come. Generally, the worse the news, the higher up the chain is the person delivering it. I enjoy hearing from my oncologist, but a personal call after a scan sets off alarm bells. Too cheery of a greeting and I am suspicious of what will follow. The results are always presented in the best possible light, even when the findings are gloomy. The PA who called about the pathology report after my second mastectomy chose her words carefully. The favorable findings came first; the chemo had cleared nearly all the cancer in the breast and I had clean margins after surgery. She paused – and I caught it – before putting the best possible spin on the rest of the report, which wasn’t as rosy. By the time she was done, I found myself saying, “I’ll take that as good news,” when informed that 27 of 38 removed lymph nodes contained residual cancer. At least it wasn’t all 38!
With the advent of the 21st Century Cures Act and years of patient advocacy that sought more transparency, it is now possible to learn the results of a scan from an app on a phone instead of from a member of the oncology team. Most facilities will not upload a report until there is an opportunity to speak to the patient personally, but it doesn’t always happen that way. I know people who learned they had cancer after innocently opening a report in an online patient portal. In at least one situation, a woman discovered she had breast cancer before her doctor had a chance to read the report herself.
How we transmit information in the “information age” will continue to be a subject of wide-ranging debate. But when it comes to potentially life-altering medical news, I prefer it served clear and clean, and as personally as possible. I want a chance to ask questions pending that I am actually able to formulate any at that moment. Mostly, I hope for words of reassurance that will inspire confidence about future treatment options. The means by which the oncology team and I connect in the frightening moments cements our bond and sets the tone for everything that comes later.
As a member of the cancer club I struggle with scanxiety and anxiety, and there is difference to me. I now try to focus on the scans and tests as a means of surveillance. Its observing and gathering data to form trends and try to predict what might happen so the doctors can be a step ahead of the disease if it decides to rear its ugly head again. I try to avoid the patient portal when I see “new test results” as it reminds me of a slot machine in Vegas and waiting for it to stop spinning as you never know what you might get!
I like the analogy of the slot machine in Vegas. It DOES feel like that. Thank you for your comments!
Full disclosure: I’m Clare’s mom. Clare has used her talents of observation and explanation to lead others who have received a similar diagnosis through the painful process. Although my words come with a bias, I believe she is performing a great service to women and their families. Good work, Clare!
Thank you, Mom! I very much appreciate all your support, especially for this blog project!
So much has changed since my DIL was DX in 2004. There were so few scraps of information for IBC. I love seeing the new technology, the information shared, the survival!! I remember the incredible news of a survivors symposium and thinking it was amazing that survival of IBC, and the treatments of it, was possible. I’m sad that insurance people still don’t get it. Or they pretend not to? It’s an absolute joy to see you reaching out to walk other women through the fog of diagnosis and learning to cope. That is a gift beyond compare. May you continue to thrive.
Thank you so much for your comments. Your DIL is always on my mind and in my heart. Morgan Welch is forever remembered, most especially by those of us who are so fortunate to receive treatment at MDA. Because of the clinic dedicated in her honor, I am alive today. I greatly appreciate your kind words and support.