By Alison Mayer Sachs, MSW, LSW, OSW-C, FAOSW, Director, Community Outreach & Cancer Support, Services, Eisenhower Lucy Curci Cancer Center, Eisenhower Medical Center and lung cancer survivor
“Scanxiety” is a term that people with cancer use to describe the anxiousness and fear they experience before, during, and after scans to diagnose cancer, monitor treatment progress, or to determine whether it has or hasn’t recurred.
How do I – someone who is both a lung cancer survivor and an oncology social worker – manage scanxiety? I’m the expert and I’m the patient. That does not give me the edge over anyone else. As a matter of fact, it often contributes to my anxiety as my annual lung CT approaches. After 14 years I thought I would be past that fear, that feeling in the pit of my stomach. But the truth is, every time I’m scanned there is the possibility I will once again hear those dreaded three words “You have cancer.” And for that reason, I continue to feel anxious.
So, what do I do? Over the years I have built a “scanxiety tool kit” – an assembly of tools that provide me with some sense of comfort and calm. I hope it will do the same for you.
Prior to a CT scan
- Tool #1: For me, it’s some form of exercise. Whether it’s swimming, walking, riding a bike, or even cleaning the house, movement keeps the churning in my stomach to a minimum… at least for a while. It’s as though the fear recedes and is replaced by a sense of control in my body for the time being.
- Tool #2: I keep occupied with my favorite pastime: watching movies. Whether I’m seated in a movie theatre or streaming a season’s worth of TV shows, I find getting lost in the entertainment gives me a reprieve from my way-too-active cancer imagination. And, full disclosure, a bowl of popcorn helps!
- Tool #3: I do a reality check-in with myself: What did I do at other times in my life when I was anxious or fearful? How did I cope then? I can then use some of those techniques to get me through this anxious time. I often remember that I needed help from my family, friends, doctors, and more, and that reminds me to ask for help this time, too.
During a CT scan
- Tool #1: Guided imagery – or the use of words and music to evoke positive imaginary scenarios to bring about a positive effect on a person – was, and is, a game changer for me. From the moment I lay down on the CT “bed” I close my eyes and choose what I will be “doing” during the scan. My favorite thought is golfing with my dad. With my eyes closed, I start getting ready to play and then go step by step: getting my clubs into the car, driving to the golf course, parking, sitting and putting on my golf shoes, getting my bag out of the trunk, walking to the first tee, teeing up the ball, hitting a perfect drive, and then off my dad and I go for our uninterrupted four hours of father-daughter time. I never get past the third hole before the scan is over and I’m sliding out from the CT machine, often feeling calm and relaxed from my “imaginary time” with my dad. I try to hold on to that feeling for as long as possible.
- Tool #2: Once the scan is finished, I head straight to a pre-arranged treat. I meet up with my husband, a friend, or a family member to go someplace quiet and lovely for a special meal. This gives me something to look forward to and is a reminder that I am still here, and life is good, even if it’s just for now.
Waiting for results
This is the time I often refer to as the “Damocles Sword” period. That’s when it feels like the sword is swinging over my head, slowly coming closer and closer, impending doom creeping towards me.
- Tool #1: I have found I always feel better if I reach out to my Primary Care Provider (or whoever has ordered my lung CT) to communicate how frightened I feel waiting for results and let them know how important it is for me to receive results as soon as possible to help me get out from under that dangling sword.
- Tool #2: I return to my tool kit and pull out the “prior to CT scan” tools that helped me gain some sense of calm and normalcy before I went in for my scan. And I wait.
- Tool #3: Today, as I wait to find out if I remain “cancer-free,” I remind myself of one thing. One very important, positive, life-affirming thing: I am still here. Fourteen years later and I am still here. Now, some don’t like the word “survivor.” Me? I cherish that word. I share it, use it to comfort, and remind myself of how profoundly grateful I am to be, right now – for this day, this week, this month – a lung cancer survivor.
Recognized nationally for her leadership in the field of Oncology Social Work, Alison Sachs served on the board of The Association of Oncology Social Work and presently sits on GO2 for Lung Cancer’s Scientific Advisory Board, Zero Prostate Cancer’s Medical Advisory Board, and Coachella Valley’s Desert Cancer Foundation’s Board of Directors.
In her current role, Alison and her team are responsible for the development, design, and implementation of community outreach events community education programs, oncology social work services, and disease prevention and health promotion programs at Eisenhower’s Lucy Curci Cancer Center. She facilitates several support groups across types of cancers. Alison has lectured extensively on the importance of support and education for cancer patients, their loved ones, and the community in general.
Alison is adjunct faculty in Eisenhower’s Graduate Medical Education Residency Program, is the co-author of a chapter in the Oxford textbook “The Handbook of Oncology Social Work,” and serves as a reviewer on the Editorial Board of the Journal of Psychosocial Oncology’s special section “The Art of Psychosocial Oncology.”
I thought it was just me. Yes, I have great anxiety prior to my CAT scan. I’ve been cancer free for almost 4 years from stage 3 lung cancer. Frankly, I never thought I’d be here now. I credit it to God. I have many friends and family that pray for me. When I’m in the machine I pray the rosary. The scan is so quick I never finish it…then. But I do before the day is done to thank the Lord.
Thank you for these tips! One thing that I have found helpful to tell myself before scans is, “This is just to confirm that I have no cancer.” NOT “This is to look for more cancer.” For whatever reason, that seems to help me. I also use a dab of peppermint oil below my nose (or I dab it on my mask, which works great by the way!) I have come to associate the smell of peppermint with relaxation. It also helps me remember to take deep breaths through my nose.
As someone with lung cancer, who experiences scanxiety each and every year (I still have tumors to be reckoned with) I find it disconcerting that, we do not talk about, plan for, and find some personal reconciliation with the fact that we all die. None of us wants to die– yet if a person can emotionally and spiritually say, “If I die from this disease, my life was good and it was enough,” then the scananxiety would be quieter. While we take on the battle of cancer, we must simultaneously find ways to be filled with gratitude, reconciled to the fragility ad impermanence of this life, and have in place all the safequards we can for the beloveds who we leave behind. To omit these discussions just feeds our fear.