Due to the high rate of recurrence, most pancreatic cancer survivors are closely monitored even after there are no longer signs of cancer. This usually involves scans, which tend to result in a great deal of anxiety. Scans + anxiety = scanxiety. And scnaxiety sucks.
For those who are going through it, this post is to let you know you are not alone. And for folks who have not experienced it, I hope to provide some insight into this phenomenon that is sometimes difficult to put into words.
Aren’t the scans a good thing?
Yes, they are a very good thing because they help catch any cancer that might have returned or spread. But think about how you might feel before going to the dentist (I hope they don’t find a cavity!) or getting an annual physical (I hope they don’t discover my cholesterol is too high!) or even getting a colonoscopy (okay, this one is similar because you don’t want them to find cancer in your colon after having to go through all of that pooping the day before).
Take the anxious feelings those events invoke and turn them up to 11. Scary, right?
Even if there is good reason to believe it will be fine, pancreatic cancer has such a high recurrence rate that all too often people do get the results they fear: the cancer has returned or spread. But at least the scans usually can catch it quickly improving the chances of getting rid of it.
I have every reason to believe my scan results will be fine, but I am still a mess for a couple of weeks leading up to a scan. And day of? I take the day off work because I can’t think well enough to be productive. Scanxiety is a serious bitch.
Why all the scans?
For most pancreatic cancer survivors, scans are an ongoing part of life, at least for several years because of — you guessed it — the high recurrence rate. In my case, I had the Whipple in April of 2021 followed by six rounds (about five months) of chemotherapy. My first scanxiety-producing scan was one month after chemo ended.
This particular scan was terrifying because I did not want to find out I had just gone through major surgery and months of putting poison into my body only to still have cancer. Thankfully, that was not the case and the sweet phrase of “no evidence of metastatic or recurrent disease” appeared on the report.
What is NED?
NED stands for “No Evidence of Disease.” Not every report words this exactly the same, like mine usually has the phrase mentioned above. From what I’ve read, doctors are extremely reluctant to say anyone is “cured” or “cancer-free” and I totally get it. I wouldn’t either. As a patient, I really don’t want to be told I’m “cured” or “cancer-free” because the finality that comes with those phrases feels like false hope. I want to have hope, but I also want to be realistic about what I’m facing.
What helps with scanxiety?
I am fortunate to have a husband who is a rock star at being supportive. He has patience and grace when I flip out over nothing or cry at the drop of a hat during the two or three weeks leading up to scans. He knows I am not myself. I have to say scanxiety kinda feels like PMS from hell on steroids with an attitude at times. God bless that man for sticking by my side.
On scan days, he takes leave from work to be with me. It’s nice that he goes with me to the hospital for the scans. It’s absolutely wonderful that he is with me while I wait for the results to pop up in the electronic chart. The waiting can be excruciating.
Having said all of that, the main thing that helps is just knowing I have someone by my side. I also know I have family and friends praying for me and sending good thoughts and vibes my way. If you know someone going through this, just let them know they are on your mind and in your heart. It really does make a difference.
The other thing that helps with the scanxiety is remembering that I am at least alive to have it.
Rhonda, are you a pro at handling scanxiety?
Hell no. As I type this, I realize I’ve had my orders for the next scans for three weeks now. I just haven’t scheduled them. The thought of making the call makes my heart beat faster and my throat tighten a bit. Stupid scanxiety.
Right before my fifth birthday, I found out was going to have to get shots so I could go to kindergarten. I didn’t want to deal with either, so I decided I would skip turning five and instead turn six to avoid the shots and kindergarten (in case you were wondering, it didn’t work — I still had to turn five and get the shots and go to kindergarten). I suppose I put off scheduling scans for a similar reason: if I don’t get a scan, I can’t possibly have cancer. The logic is just as flawed.
Oh, okay. I’ll call and schedule the damn scans. And I will know that I have people in my corner sending loads of prayers and love, regardless of the outcome. And I will still hope for those beautiful words: no evidence of metastatic or recurrent disease.