The Reality of Dealing with Scans and Scanxiety
I hear people talk about scanxiety all of the time. Most live in fear of having the regular scans that are required when you have been diagnosed with cancer.
In fact, nearly 90 percent of people responding to Health Union's Lung Cancer In America 2018 survey said that waiting on the results of scans, whether they are X-rays, CT scans, PET scans, or MRIs, causes them distress. Some people are nearly paralyzed with fear of what the scans will reveal.
Fighting through worry
It makes some sense to me that people would experience some fear. Fighting lung cancer is no walk in the park. I guess all of us worry that our next scan is going to show that our cancer has grown, spread, or that new tumors have appeared. It would be impossible to not worry at least a little bit about that.
I have been living with my cancer for six years. During that time, I have had so many scans I have lost count of them. For four years, I had two CT scans (one of my lungs and one that focused on all of my other organs) every six weeks. I got so accustomed to drinking barium that I could guzzle it without gagging.
Now, I have moved to only one scan (lungs) every four months. The reprieve has been nice. I mean, you have to wonder sometimes if all of the radiation from the scans themselves isn't dangerous.
The wait leading up to the results
My oncologist prefers that you not learn the results of your scans until you see him which means I have to wait a couple of days. The delay is a little nerve-wracking, but I try to keep busy so that I don't have much time to dwell on what-ifs.
Plus, I have a little different attitude about learning the results of my scans. By the time it is scan time, I am ready to get an update on how I am doing. Am I still "unremarkable?" (Have you ever been so happy to be unremarkable as when you are hearing results of your scans?)
Making sense of the scans
I tend to look at the scans much like the doctors probably do. I want to know if everything is still stable. If something has changed, then I want to know so we can figure out what to do about it.
Twice during my journey, my scans have shown growth. The first time was after I had completed traditional chemotherapy and had had a brief respite from treatment. The scan revealed that the tumors had regained all of the ground we'd made against them with chemo. I had to make some treatment decisions. I chose to go into a clinical trial. That was the best decision I have probably made during my time with cancer.
The second time my scans showed change was during 2017. A tumor in my lymph node that had been sitting quietly for five years had begun to grow. It took me a little longer to decide on a course of treatment this time, but I ultimately chose to have the tumor radiated. That was probably the second best decision I have made during my time with cancer.
Don't let scanxiety stop you from living
My most recent scan was in January and took place days before I left for my first-ever international trip. At the time, I had hoped to put it off until I return so that I wouldn't have to worry about making any potential treatment decisions until after the trip. But, I decided to let the appointment stand. I figured if I was still "unremarkable," then I could enjoy the trip knowing that the cancer is still stable. If the scan revealed that I need to make some treatment decisions, it would be nice to give my brain a chance to decompress before choosing the next path.
Have you had biomarker testing done?