Overcoming Scanxiety: The Reality of Cancer Surveillance and Recurrence

For the past six years, I have been receiving follow-up surveillance CT scans based on my initial rare neuroendocrine cancer diagnosis. What started as three-month intervals eventually turned into six-month scans. Even though the weeks leading up to the appointment are less stressful than they used to be, a few days before I go in, I still find myself getting anxious and irritable.

My mood changes. I get quieter. I am impatient. I don’t want to do much. I watch a lot of dumb television to keep my mind off harder things. And I expect everyone around me to recognize the moment that I’m in. Which, of course, isn’t a fair expectation.
The time between scans offers a chance, if you’re able to take it, to not be in the cancer vortex. But the reality is that once you’ve had cancer, you’re never able to assume you won’t get it again. In other words, for every question you ask in life, you have to be ready for the answer. Going in for scans is a hard question to ask because the answer could literally be life-threatening.

So, what is hard about heading into a surveillance visit? It’s …

• Hard to make the two-hour drive to the facility.
• Hard to check in.
• Hard to witness others’ pain.
• Hard to wait for your turn.
• Hard to have an IV stuck into your small veins.
• Hard to be reminded of past visits through the smell and taste of saline once your IV is in.
• Hard to talk pleasantries with strangers.
• Hard to drink oral iodine for an hour in prep for the CT scan.
• Hard to feel nothing but absolutely alone in the CT chamber.
• Hard that people who are closest to you don’t fully understand the trauma of being a patient with cancer and survivor that never goes away.
• Hard to wait for results that usually come quickly but sometimes don’t show up for hours in my portal.
• Hard to hear that they’re seeing something that could be a something.

As it turns out, my latest scan is showing something, and after six years of being cancer-free I’m now heading back into a world of fear and the unknown.

• It’s hard thinking about the potential suffering I might face.
• It’s hard thinking about your own mortality.
• It’s hard to think about the toll your health issues have on your family.

So, with all that is hard, is there anything that makes it easier?

Yes.

• Hearing caring and thoughtful conversations between healthcare providers and patients.
• Being offered a newspaper to read.
• Feeling grateful I have access to quality healthcare.
• Knowing that people who work in the facility try very hard to make the day as easy as possible.
• Treating myself to a bag of potato chips post-scan.
• Remembering all I’ve been through and that despite my very hard cancer journey, I’m still standing.
• Being comfortable with continuing to live, not just shutting down, no matter what tests tell me.
• Knowing I’ve got friends and family who have proven to me they know how to show up when I need them.

I’ve come to learn that most people in my life have health issues and that my cancer survivor status is not unique. I typically don’t find out about what they’re going through unless I ask. I, on the other hand, want everyone to know what’s going on. I want everyone to understand the moment I’m in, and I will take all the love, understanding and outreach to whomever is willing to give it.

This journey has been hard. It is my hope that the coming weeks will be easier than I expect them to be. It’s my plan to continue to find light and ease in between what’s dark and hard.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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