It starts with anxiety. Then it’s scanxiety. Then, fear of recurrence. These emotions can team up and avalanche into extreme cases of paranoia. How can we regain control of our fear before it becomes harmful?
Every cancer survivor knows that a diagnosis comes with a ten-foot long list of emotions, including anger, embarrassment, guilt, sadness, gratitude, love, resentment, and perhaps, the one that trumps them all: paranoia.
The cause of this paranoia is directly related to two emotional side effects that we can’t seem to escape: scanxiety
and the fear of recurrence.
If you’ve experienced those two, welcome to Club Paranoia. It’s definitely not a club I ever wanted to join, but I’ve found myself with an irrevocable membership, just like most of us who have been affected by cancer.
When it shows itself, the Club looks and sounds a lot like this:
"There is a lump on my face by my left ear," I inform the doctor, proud that my voice is clipped and analytical. There’s not the slightest inflection to betray my past three sleepless nights.
Oh Jesus, help me.
This doesn’t seem to impress her the way I expected. She routinely probes the side of my face with two clinical fingertips. She feels the lump for two seconds--tops--before pulling away and turning to write in her clipboard. "Swollen lymph node from your sinus infection,” she says to the paper.
Apparently two can play the analytical game.
"Isn't it large for a lymph node?" I ask, my fingers involuntarily reaching out to the offending bulge in question. It feels like trouble.
The doctor jerks her head up from its deep bow, her eyes carefully neutral. Maybe my voice isn't as nonchalant as I imagined.
Seemingly without breathing, she reaches over and feels the spot again. She knows my history. That’s why she’s being just as careful as I am, not wanting to lean too far one way or the other. She pulls away her fingers but stays close to me. She looks in my eyes and I see compassion. "If the lump is still there after you finish the antibiotic, come back and see me,” she says.
I nod numbly. The back of my mind, the part that’s not totally articulate, orbits around a particularly unforgettable fact: Dad's cancer diagnosis began with a lump on his face.
This happened four months ago. Hello and welcome to Club Paranoia! Here’s your complimentary badge of chronic anxiety and “What If…” bumper sticker.
Every cancer survivor understands the heart-stopping paranoia that can strike at the sight of any little bump, sore throat, body ache and tired muscle. We’re logical and realistic people, but sometimes nothing can dissuade us from believing the dragon is back, breathing down our necks. And don't even get me started on the stuff that may get stirred up when it is time to go in for another test or scan.
Scanxiety and fear of recurrence come hand-in-hand to wreak havoc on your doctor visits, battering you back and forth with thoughts intended to bring you back to the first day you were diagnosed.
The cancer is back. I just know the cancer is back. Maybe the doctor didn't get it all. I thought I was fine before and it was cancer. Will I ever be fine again?
These thoughts build into a crescendo that forms an overshadowing paranoia. It’s a unique fear we all struggle with every day from diagnosis onward, and it’s something that your friends and family may not understand if they’ve never heard those three little life-changing words. But I’ve been there.
My top 5 secrets to breaking down scanxiety, fear of recurrence, & all of the other emotions:
1. Make A Plan for Anniversaries and Other Triggers.
I always plan something fun after my mammogram appointment to separate my present from the past memories of discovering my cancer during a routine exam. Whether it’s a walk around the rose garden near the facility or a lunch date afterward, I make it a point to get out of my own head afterward. This keeps me from dwelling on what’s just happened and keeps me in physical motion, which in turn allows me to move on from thoughts that try to drag me down.
2. Be Gentle with Yourself.
Extend grace and kindness to yourself and your fears. This might sound a little too sympathetic to something that you consider a plague, but it helps to realize that the fears are normal. It’s a part of the recovery. Even if the anxiety doesn't totally disappear, the fear of recurrence does lessen in time.
3. Identify the Lie, Then Tell the Truth.
Many fears are based on the untruths we tell ourselves. Can you admit to telling yourself these lies?
I am the same age my mother was when she died. I'm going to die too.
All this (fill in the blank) is going to cause the cancer to come back.
The doctor looked at me funny. He knows something I don't know.
As a great cancer survivor once said, “Identifying and calling the fear by name is the first step in turning off the voice.” That’s Lynn Eib, taken from a book that helped me get past my own self-harming thoughts: Finding the Light in Cancer's Shadow.
4. Talk About It.
This is the part where you connect with people that will help support you. Join a support group. Try out counseling. Tell your story in a journal. Don't suppress the fear of recurrence or think you have to be positive all the time. Diffuse the power of the fear by getting it out in the open.
5. Don't Focus On What You Can't Control.
Let's face it: none of us counted on getting cancer the first time around, so knowing we can get cancer again is an unavoidable, at times paralyzing possibility. Focusing energy there is a waste of time because we have no control of that part of our future.
But we can take stock of our lives, accept our mortality and make positive changes, whether it is to choose a healthy lifestyle or seek deeper spiritual meaning. Personally, I have found prayer to be helpful.
We might not ever be able to cancel our membership to Club Paranoia, but at the very least we don’t need to keep renewing it. We’ve met each other there and we don’t need to go back to find that commonality. I’m returning my Club card for good--what about you?
What ways do you deal with paranoia, scanxiety, and fear of recurrence? Tell us in the comments below!