Scanxiety Is Real: What I've Learned About Living Between Scans

I have been living with stage IV kidney cancer for more than ten years.

By now, I have had more CT scans, MRIs, PET scans, blood tests and follow-up appointments than I could ever count.

You would think after a decade, I would have this part figured out.

You would think the anxiety would eventually go away.

It doesn't.

It gets different.

It becomes more familiar.

But it never completely disappears.

If you are a cancer patient, you probably know exactly what I am talking about.

The term is scanxiety.

That uneasy feeling that starts creeping in before your next scan. The voice in the back of your mind that wonders whether everything is still okay. The tendency to pay attention to every ache, every pain, every new sensation and immediately ask yourself the same question:

What if?

When Scanxiety Starts

For me, scanxiety rarely begins on scan day.

It usually starts a week or two beforehand.

At first, it is subtle.

A passing thought.

A quick glance at the calendar.

Then little things begin to happen.

I notice a pain in my back.

A headache.

A little more fatigue than usual.

And suddenly my brain starts doing what cancer patients' brains often do — trying to connect dots that may not even exist.

The rational side of me knows better.

The rational side knows I have had these same thoughts before.

The rational side knows that most of the time there is an explanation that has nothing to do with cancer.

But cancer isn't always rational.

And neither is fear.

One of the things I have learned over the years is that scanxiety isn't a sign of weakness.

It is a sign that you understand what is at stake.

The Hardest Part Is Often the Waiting

The scan itself usually isn't the hard part.

The hard part is what comes after.

The waiting.

For me, that has always been the worst stretch.

You leave the imaging center knowing that somewhere inside a computer is information that may significantly impact your future.

But you don't know what it says yet.

Someone does.

You don't.

And that is a difficult place to sit.

Your mind fills in the blanks.

You replay how you have been feeling.

You try to remember exactly what the radiology technician said.

You convince yourself you noticed a certain look on someone's face.

You create stories based on absolutely no evidence whatsoever.

I have done all of it.

Most patients have.

The reality is that waiting gives fear room to operate. And fear is incredibly creative.

Finding Ways to Move Through the Anxiety

Fortunately, over the years I have learned a few things that help.

The first is staying busy.

Not busy as a distraction.

Busy as a reminder.

A reminder that life continues to happen while you are waiting for results.

Cancer has already taken enough of my attention over the years. I have learned not to give it more than it deserves.

So, I stick to my routine.

I spend time with my family.

I work on projects I care about.

I stay involved in advocacy.

I try to keep living my life.

The second thing I have learned is to talk about it.

For a long time, I didn't.

I thought I needed to be tough.

I thought I needed to carry it myself.

What I have discovered is that simply saying, "I've got scans coming up and I'm feeling a little anxious," takes some of the power away from it.

My wife Liz knows exactly when scan week arrives.

My four daughters know too.

There are days that I think Quinn, our goldendoodle, even knows too.

I don't even have to say much.

After ten years, she can tell.

Most spouses and caregivers can.

And while they may not be able to fix it, they can help carry it.

The Importance of a Care Team That Understands

I have also been fortunate to have a care team that understands this reality.

One of the great gifts my Dana-Farber team has given me over the years isn't just outstanding medical care.

It is understanding the emotional side of living with cancer.

They know that the waiting is hard.

They know patients spend those days wondering and worrying.

And more times than I can count, someone from my team has reached out as soon as preliminary results were available.

Sometimes it's a phone call.

Sometimes it's a portal message.

Sometimes it's simply a quick reassurance.

To them, it may seem like a small act.

To a patient sitting in the uncertainty between a scan and the results, it's anything but small.

It's enormous.

Scanxiety Doesn't Mean You're Doing Something Wrong

Perhaps the biggest lesson I have learned is this:

Scanxiety doesn't deserve a second layer of guilt.

For years, I thought that because I had been doing this for a long time, I should somehow be better at it.

I should be calmer.

Less worried.

Less emotional.

But that is not how it works.

I have met patients who are newly diagnosed and patients who have been living with cancer for decades.

The common thread is that none of us are completely comfortable with uncertainty.

And that's okay.

You don't have to be fearless.

You just have to keep moving forward.

Life Happens Between the Scans

Even now, after ten years, there are moments when I hold my breath waiting for a phone call.

There are moments when my heart beats a little faster as I open a test result.

There are moments when the uncertainty feels heavy.

But there are also moments that remind me why I keep doing it.

Holding my grandson, Charlie.

Watching my daughters build their lives.

Celebrating another anniversary with Liz.

Experiencing milestones I once wasn't sure I would see.

Those moments remind me that while scans are important, they aren't the story.

They are just checkpoints along the way.

The story is everything that happens between them.

And that is where I have learned to place my focus.

Not on the waiting.

Not on the worry.

But on the life that is still unfolding in the space between scans.

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