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A nervous cartoon face with the scanner moving into its eye.

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • katrinagamber
    2 months ago

    I was recently diagnosed with Stage IV Adenocarcinoma with no mutations but 90% PD-L1. First line treatment was immunotherapy alone. After 3 treatments I had a CT scan and it revealed the cancer was not responding to the treatment. Receiving that news caused anxiety about getting future CT scan results. Second line of treatment was immunotherapy and chemotherapy combination and radiation to 2 bone mets. After the 3 treatments of this regimen it was time for the new CT scan. The anxiety started about 3 days before the scan and lasted until I met with the oncologist for results. I am thankful that I have access to a patient portal so I can see my results prior to meeting with the doctor but now the anxiety continues because the scans revealed that I am having a mixed response (some areas shrinking and other areas growing). I am grateful that we are still moving forward with the chemo/immunotherapy next week because I don’t want to feel as if we aren’t doing anything but I am going for a second opinion at the request of my oncologist. I pray that I will get better with handling scanxiety.

  • Yolanda Brunson-Sarrabo moderator
    2 months ago

    Sorry to hear of the unfortunate scans and still mixed news. This is not an easy process; however, a second opinion is a right step in further clarity in how to move forward. Please let us know how things turn out. Best!

  • meag
    6 months ago

    Perfect timing to read this. CT scan taken yesterday! Yes, I feel anxious. I thought it was my own weakness to allow these dark thoughts to take hold again. I know see I am not alone with these feelings. I do really well between scans-atleast I thought so.Stay active, do things you love, eat healthy, live in the moment. I know the drill! Problem is I now have to wait 2 weeks to meet with my oncologist. THIS is what bothers me most. I wish the scheduling of tests and visits didn’t have this awkward zone to deal with.

  • Donna Fernandez moderator author
    6 months ago

    Wow, meag, that’s a long time to have to wait!!! I had scans today and I’ll see my oncologist on Monday. Some people that go to my clinic, I think, are able to have their scans on the same day as they see their doctor. I definitely think that would be ideal.

    Have you talked to your doctor about the long time between scans and visits? Maybe they can start scheduling them closer together. It doesn’t make a lick of sense to me for them to be spread so far apart (but, I’m no doctor…)

    Here’s hoping and praying that both of us get good news when we see our respective doctors!

  • SharonWalker
    7 months ago

    One of the nice things about living where I do, is that we aren’t as busy as those in big cities. I get my labs done in the morning followed by scan, and get results after lunch !

    I do feel for those that have to wait because it’s natural when you have to wait.. especially a prolonged wait.. to imagine all the worst.

    Wish all of you could get same day results.

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