Waiting On An Answer

Why A Negative Test Result Isn’t Always Positive
Carcinoid Cancer Survivor
Monday, August 8, 2016 - 11:10am

Imagine you're cold, but sweating. Time is moving slower than molasses, but your heart is beating faster than the bass line in a Beyoncé song. You’re not thirsty, but your mouth and throat are dry and your stomach is beginning to churn. Your fingers twitch, you shift in your seat, accidentally tearing some of that noisy paper covering the vinyl on the exam room chair. Minutes become hours as your growing fears form an invisible glass box around you, only to be shattered by three knocks at the exam room door.

This sweaty, hot mess of an experience describes my personal version of scanxiety, also known as the fear and anxiety that swells up around cancer patients, survivors and family members when the time comes to receive a scan that could help issue or reaffirm a clean bill of health.

Scanxiety didn’t flare up until after I went through surgery. For a few months, my OBGYN had done some blood tests and multiple ultrasounds to investigate my lower abdomen. While it took awhile to arrive at a diagnosis of endometriosis, the c-word was never put on the table. I was told surgery would make me feel better, and that was that.

"For me, the negative results meant we still couldn’t pinpoint what was wrong, and I'd have to be poked and prodded with more needles."

Five days post-op was when my doctor told me there had been a carcinoid cancer tumor on my appendix. Her grave expression and immediate advice to go get all kinds of scans with long, indiscernible names hit me like a ton of bricks that I didn’t fully process for months.

Because of how my insurance was set up, each test and scan I endured was treated as a step to an octreotide scan, which consists of a shot of radioactive fluid and multiple hour-long sessions for three to four days to see if there was evidence of carcinoid anywhere else in my body. That meant test after test and scan after scan with negative results.

This is where it gets confusing. Negative results mean that there’s no evidence of whatever bad thing the doctors were looking for - it’s not actually bad news for your body, but it can be for your mind.

For me, the negative results meant we still couldn’t pinpoint what was wrong, if anything. So every, “Your cancer test results were negative,” really meant, “Get ready for more scans.”

There were two fears - one of getting a positive result that meant something was wrong or a negative result that meant I’d have to be poked and prodded with more needles, and that answers weren’t coming anytime soon and I would have to continue waiting for results.

Even after getting the relieving news of being in remission, my mind immediately went to the thought of recurrence. Sure, my cancer was incredibly rare for someone in my age bracket, but did defying the odds in that instance make me eligible to defeat the odds again and experience a relapse despite good vibes from my doctor?

This is the vicious cycle of scanxiety. Even after getting the all-clear, all of those worries and fears can linger in the minds of survivors.

Here is a list of tips for coping with scanxiety. I encourage anyone with these feelings to check it out.