Anyone that has battled cancer, is currently battling cancer, or is a close family member of someone with cancer knows this term all too well.
Scanxiety refers to the worry and anxiety associated with upcoming scans (MRIs, CT scans, ultrasounds, PET scans, etc) and the results of these scans.
It doesn’t go away.
It gets better at times, but it’s always there lingering in the back of your mind. In fact, research in Psycho-Oncology suggests that between 4 percent and 22 percent of cancer survivors have a risk of developing post-traumatic stress disorder (PTSD) at some point during their lifetimes. Like we didn’t already have enough to worry about.
I always used to get really nervous right before a scan, not to mention the gut-wrenching stress while waiting for results. The stress can be quite overwhelming and debilitating at times. Why do they take so long for the results- maybe that must mean that everything is fine? Why are they calling me back so quickly? Why do they want me to come in to the office – it can’t be good news. I used to play all of these scenarios in my head. With five cancer diagnoses under my belt, you can imagine how much time and energy Scanxiety has taken from my life. Way too much.
I remember very vividly that ill-fated morning back in February 2014 when I was first told that my cancer had metastasized. It was the usual 3 month follow-up of my neck MRI as well as an X-ray of my lungs (to make sure there was no funny business going on in there). This was the standard protocol for my osteosarcoma: an MRI and X-ray every 3 months for the first two years, then every 6 months for the following two years, and then once a year…unless something went wrong in the interim, that is.
I was always jittery and on-edge when I had to go see my oncologist for results, but that morning, for whatever reason, I wasn’t too bad. All my previous scans had come back clear, so I kept thinking to myself that everything was going to continue this way (although part of me didn’t always believe this to be true).
That day I was sitting chatting with my mom until the oncologist came in while my cousin waited for us in the waiting area. We were supposed to go out for lunch to celebrate my good news that I anticipated receiving. Eating always made me happy.
My oncologist and I have a good relationship. She spends time chatting with me, and she had been rather upbeat on previous visits (as my prior results had been boring, just like we liked them). However, this day she came into the room with a look of despair in her eyes. Almost like a grim reaper of sorts.
She said “I need you to go and get a CT scan and then come back here and we will look at the results together.” WHAT?! Why do I need a CT scan I said, I just had an X-ray of my lungs, what did the X-ray find? “The X-ray came back clear she said, but your MRI (which was of the neck) happened to catch the upper part of your lungs and we see some ‘spots’; I just want to make sure these ‘spots’ are nothing to worry about.”
Right at that moment I wanted to crawl out of my body. Run as far away as possible and never look back. When was I going to wake up from this terrible nightmare? I suddenly had a knot in my stomach that was the size of a beach ball, I couldn’t breathe, and I felt like throwing up.
I was shaking all the way to the CT scan area. Spots in my lungs? For sure I have cancer, what else could it be. I am so surprised that I didn’t faint. This was my worst case of Scanxiety thus far. My mom looked really worried, but like always, she was trying to be strong for me.
The CT scan took all of 2 minutes, but those felt like the longest two minutes of my life. I wanted to cry but I didn’t want the technician to freak out and come over to console me because then this thing would take longer – I just wanted to get it over with.
The technician told me to take a deep breath, and all I could think of was Lady, I can’t breathe…I am just about to get told whether I have cancer in my lungs or not, which means I could die, I can’t breathe. But I mustered up the courage and took a deep breathe. All I kept muttering in my head was please don’t let this be cancer, please don’t let this be cancer, please don’t let me die.
As we all know now, those “spots” were indeed cancer that had metastasized.
As soon as the oncologist uttered those words to me, I went numb. My chest and throat instantly tightened up. I didn’t have any words, tears wouldn’t come out either. I felt like throwing something across the room or smacking someone.
I wanted to scream in that room, like this
But nothing came out. Instead, I probably looked like such a bad ass, like nothing can get me down, not even some metastatic cancer.
Of course we didn’t go out to lunch to celebrate that day, as everyone in the car felt sick to their stomachs. Eating was the last thing on our minds. I hardly said a word the entire car ride home. As soon as we got home, I ran upstairs to the bathroom, turned on the tap (so no one would hear me) and I burst out in tears. All of those built-up emotions that I was trying desperately to suppress came pouring right out. I sat on the bathroom floor while hysterically crying. I think if I had been hit by a truck that day instead, I would have felt better. Well, maybe not.
Similar to every other cancer patient out there (and their families), I continue to feel anxious every time I have a scan and am awaiting the results. This is completely normal. You are not crazy. There is constant fear – fear that the cancer has spread, fear that the cancer has gone somewhere else, fear that the cancer has now become terminal, or for those in remission, the constant fear that the cancer has made a comeback.
Although Scanxiety is quite normal, there are some things that can help you to cope with this overwhelming feeling of stress. Here are a few tips:
1. Try to surround yourself with positive people (close family and friends) before your scan and before receiving any results. Bring a family member and/or a friend with you to these appointments. This can be a good distraction, try to laugh and talk about un-cancery things (That’s not a word, I know).
2. Do something fun that you enjoy – this can help you take your mind off of things. Recently, I have been watching movies (especially funny ones) the night before. Do yoga, exercise, dance, take a bubble bath, engage in some hanky panky – whatever floats your boat. It’s all good 😉
3. Engage in relaxation and deep breathing techniques. This really helps! Just try to take a few deep breaths whenever you feel anxious or your mind starts playing out awful scenarios. As you exhale, imagine you are exhaling/letting go of all of your stress and fears. Deep breathing will help to center you again. It’s amazing how relaxing deep breathing can be. Plus, it’s free and it can be done literally ANYWHERE!
4. Pray, meditate, and repeat positive affirmations over and over to yourself (either in your head or out loud, the person next to you on the subway might think you’re crazy, but who cares).
5. Try to schedule your appointments in the morning if possible, this can reduce waiting times a bit, which helps.
6. DO NOT GO ON THE INTERNET AND READ ABOUT CANCER! (Unless it’s my blog, of course, that’s a given!)
7. Make sure you write down all of the questions and concerns that you would like to discuss with your oncologist or treatment team at your appointment. Having all of your questions answered can help put your mind at ease and make you feel less anxious.
8. Have faith in your treatment plan, whatever it may be. Be confident in the choices you are making with respect to your health, life, and overall well-being. Try not to second guess yourself. Trust your gut, it knows more than you think.
9. Play games on your cell phone, chat with family members, do a crossword puzzle or sudoku, or bring a good book or some meditation cards with you to your appointments to help ease stress and distract you.
10. (This one is hard to implement, but it makes sense.) Try to remember that the scans and the results will be the same whether you worry about them beforehand or whether you don’t. So, why waste your precious time and energy? Save it for something way better than cancer.
Hopefully some of these tips that I have tried and continue to implement in my own life will help all of you lessen your Scanxiety. Whether it be the stress of cancer, any other chronic disease, or hospital visits in general, we could all use some help. And please feel free to reach out to me if you would like more information or advice.
Love and relaxation to all! xo