Overcoming Scanxiety

"Scan, treat, repeat"- a common phrase in the world of advanced cancer. Scans are significant because they tell us if our treatment is working. I like to think of being a full-time cancer patient as my job, and my scan as my "paycheck."

All of that hard work, those trips to the hospital, and days tinged with lingering fatigue are worth it when I get that good scan result. It keeps me going for another three months until it’s time to scan again, and again, and again.

Scans can vary

Depending on your cancer type, subtype, and location of mets, your scans may vary. There are PET scans, CT scans, bone, and brain scans! Some are done annually, quarterly, or as-needed.

First post stage IV scan

The result of your scan can be bad, good, or what my dear friend and mentor calls a "mixed bag". My first post stage IV scan was what most would consider being "bad". The cancer had spread outside of my lung and into my spine, hip, rib, and femurs, as well as an innumerable lymph nodes. This told my doctor that I was not responding to treatment and needed a new one fast.

Second scan was good news

My second post-stage IV scan was what most consider to be "good." The cancer was "resolved" in all of my bones and lymph nodes. All that remained what the original met-in my lung. This told my doctor that my current treatment was working! We all breathed a sigh of relief to learn that I was finally responding.

Third scan was a mixed bag

My third post-stage IV scan was what my friend would call a mixed bag.There was no new cancer, but the one met in my lung had grown slightly. Not enough to be considered unstable, but nevertheless-it grew.

This occurred after I took nearly one month off of treatment for vacation, and told my doctor that as soon as I miss even one cycle of chemotherapy the cancer starts to "wake up again."

Managing Scanxiety

With so many variables and potential outcomes, it is no wonder that many people experience scanxiety. Once you have advanced cancer, a part of your new normal is accepting that scans will play an enormous role in your life forever. These are some useful tips to help you adjust.

Planning the day

Every hospital is different, but I know that mine gives me my results on the same day. Knowing this, I plan for that day to be as stress-free as possible. That way when the call comes in, I can sit down and focus. If it’s "bad" news, I am comfortable, and not caught off-guard. This last time I was playing Jenga on the porch with boy son when the call came in.

Some people might like to be family or friends, alone, busy organizing their sock drawer! Whatever will make you feel calm is what matters. It’s your day. Really.

Being cautiously optimistic

After being the recipient of both good and bad scan result calls, I have learned to rely upon cautious optimism. I take a deep breath, relax, and remind myself that the scan is my weapon, it is telling me exactly where the cancer is, and how to fight it! No matter what the result, it is a powerful tool in my arsenal. This shifts my mindset from anxious to grateful.

Preparing for a plan b

Lastly, once I remember that I have this incredible tool at my disposal, I remember that I have other treatment options, too.

Technology is a wonderful thing! I know that one day that might not be the case, but as of today, it is. For most of us, if our treatment is failing, we have other methods ready to try. I have learned that the hard way, when I found out the cancer spread rapidly in only three months in between scans.

Instead of panicking and thinking I am doomed, I mentally prepare myself for my plan b. It might ease your anxiety if you discuss your hypothetical plan b with your doctor, so you know you are ready for whatever comes your way.

You are not alone

Scanxiety can be very real and frightening, but please know you are not alone. It is normal! There are ways to cope. Please talk to your doctor if you feel you need other management strategies. In the meantime, good luck with your next scan. I hope you walk into it feeling calm and empowered!

How are you managing your scans or monitoring?

Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.