A few years ago, at one of our “Living Well with CML” conferences, I met a woman with CML who, after sharing that she struggles with intense anxiety weeks before her routine appointments, asked me if I ever worry before a check-up. “Of course,” I said. “How can you not feel a little nervous?” It is much better than it was seven years ago after I was diagnosed, but there is still a small part of me that gets a bit nervous as the nurse is drawing blood, and I can’t help wondering if this will be the time that the numbers come back not quite right. A friend of mine follows the same routine before every check-up, right down to entering the hospital through the same door, taking the same flight of stairs and sitting in the same chair, as if that somehow will ensure a good report. If you feel worry or anxiety before a visit to your CML specialist, you know exactly what I am talking about. The good news is that you are not alone. In fact, there is even a name for it: scanxiety.
Check out this interesting article below that was posted on Medivizor last year called, “Keep calm and carry on: Seriously?” for tips for both patients and caregivers on managing check-up related anxiety. While the author refers to scans, scanxiety can refer to any test, such as a blood test or bone marrow biopsy.
From Medivizor: Scanxiety is the term coined for the pre-test and post-test fear that many patients diagnosed with cancer face.
Fear of cancer returning is the underlying source of scanxiety and it is the normal reaction to the life changing experience of a cancer diagnosis. Over 16,000 Google results describe the phenomenon, many of these written from the patients’ and caregivers’ perspective.
“And I cannot describe the torturing fear in that space of time between scans and review/results.”–Phillipa Ramsden
\”My ‘scanxiety’ is back. It manifests in clenched mouth, shallow breathing, and nauseated stomach… The ‘what if’ thoughts are frequent and my adrenal glands are on high alert.”–LiseyBendy
Scanxiety in Caregivers
Scanxiety is an equal opportunity fear–spouses and caregivers experience it as well.
“I want to tell her that we didn’t have to do any more, that it’s all over. But it’s not. So many people, when she finished treatment, shared how excited they were that we we done. And we are—with chemo and radiation. But “remission” is not “done.” It’s needles every month. It’s scans every 3 months. It’s making my sweet girl feel pain that I wish she never had to feel.”-Mediocre Mom
“It’s that time again; my husband is going in for scans and his second follow-up visit. He will have an MRI to monitor his spine…He’s relaxed; I am a basket case!”-Sarah
Advice from Patients and Healthcare Providers
Here is some excellent advice from bloggers and healthcare professionals on how to deal with scanxiety:
Before the scan
1) Don’t talk to “problem people” in your life: people who make you feel stressed.
2) Watch what you read…
3) Schedule your scan early in the day…there will be less waiting time.
Day of scan
4) Bring along a distraction like a movie, book, a game…
5) Take a friend with you to your appointment; someone who is calm and can help you laugh.
6) Schedule a day and time to discuss the results with your doctor.
To help prevent or reduce scanxiety
7) Think about this worry…do you have questions that you have not asked your doctor or healthcare provider? Unanswered questions need to be answered. Write down your questions and do some research to get the answers you need. Believe it or not, having answers reduces scanxiety.
8) Ground yourself in what is your reality now. Be in the moment. Write down what you ate this morning, evidence of how your children are coping, recent blood work, anything to get you thinking about your life now.
9) Exercise. Exercise is important for combating fatigue and reducing recurrences.
10) Deep breathing slows your churning mind and calms you.
11) Challenge the fear thoughts. Some professionals recommend cognitive behavioral therapy to help identify thoughts that are not helpful to you.
12) Medication can help. Your brain is an organ, like your heart. Anxiety or depression may be caused by a chemical imbalance in your brain. Depression, feelings of helplessness or anxiety are not uncommon for people who have experienced a huge life change like a cancer diagnosis.
13) Eat a healthy diet.
14) Be sure to do things for you. Listen to music, take a bubble bath, get a massage, treat yourself. Being kind to yourself helps to reduce anxiety.
15) Talk to a friend, support group or professional. You may be fortunate enough to have a friend with a sympathetic ear who can listen to you. There are support groups both in-person and online with people who have been where you are with scanxiety. One is #BCSM on Twitter. This tweet chat meets on Monday nights at 9pm ET.
It is reassuring to know that you are not alone. If you do not have access to either of these or if your condition is not improving, seek help from a professional counselor.
Being Supportive of the New Reality
If someone you know is afraid of scans and their results you need to listen and support—even if you don’t want to hear it again or want everything to go back to ‘normal.’ Because this is part of your friend’s or loved one’s new reality. Scanxiety can rear its ugly head at anytime. As Janet Freeman-Daily states;
“If I screw up on something important, I choose to think “I’ll do better next time” and I don’t feel frustrated with myself. This technique allows me to sidestep most negative emotions and continue moving forward instead of getting stuck. It even works with scanxiety. Usually. So why the heck doesn’t my scanxiety respond this time? I suppose recent events as well as past history have something to do with it. A neighbor who was diagnosed with lung cancer after me died from metastatic tumors in her brain covering a few weeks ago.”- Janet Freeman-Daily
Scanxiety Is Normal
If you are experiencing scanxiety, remember you are normal to feel scared.
“Scans, worry, being on top of every change in health—that’s not living in fear. That is the reality of being a cancer parent. That is how we found it the first time—it’s how we do our absolute best to keep it from coming back.”- Mediocre Mom