Scanxiety

I was at my second home UCHealth - thinking about doing a change of address with the post office. This week I had not one but three scans. That is my new world now that we are moving into the maintenance phase. Seems like a good time to discuss scanxiety.

When I got my cat scan on Tuesday I was sitting in the little women’s waiting room in my giant blue scrubs and hospital gown - quite the look. There were 2 other women sitting there waiting as well. At first we were quiet but then one of the women asked us what we were here for, you could just sense she was worried and needed to talk. The third woman, bald from chemo, indicated very tersely that she was getting a cat scan and MRI after 3 rounds of chemo. She barely made eye contact. I told them I was getting a scan for a maintenance study equally as terse. The original woman who first asked said she was there for an MRI, they had found a lump in her breast, she was scared. Scanxiety in action.

The next day I had a renal lasix scan in the nuclear medicine machine, they injected me with radioactive isotopes to check my kidney function. I was scared, nervous, and stressed - scanxiety, what would the results show and would I get super powers?

Pre cancer I did not know that scanxiety was a thing. What is it? It is being stressed, nervous, scared, worried, and/or anxious before, during, and while waiting for results of a scan. For some people it can be really bad, for others less so but I think all cancer patients and cancer survivors have moments of this during scans and blood tests. So much is at stake with the result - you know like our lives, that it is just overwhelming. This is a different feeling than being scared of the MRI machine because of claustrophobia. This is that fear that you will discover the treatment is not working and the tumor is not shrinking. This is the worry that cancer has returned or has metastasized. This is not knowing if the results will be a death sentence or another year clean.

I have talked to people who are ten or even twenty years cancer free and their yearly scan brings back all the fear. In my support group I have seen the results of that fear become real, cancer free for 6 years, now it is back. I don’t think it matters if you are just starting the scans or have been cancer free for years. Those feelings of worry, fear, anxiety don’t go away or get easier.

If you know someone who has had cancer and gets their yearly scans, be aware that they may struggle with this stress as the appointment draws near. They may get cranky, be sleepless, stop eating - or they may seem fine. Everyone’s path is different.

What can we do about scanxiety? Let your doctor know ahead of the scan about your concerns, they might have some strategies for you. Trying to make the appointment near rather than far out, this gives you less time to worry. Don’t try to be a doctor and read the scans, wait for your appointment and look at them with the doctor - this is hard now that test results pop up in your patient portal very quickly - let them be, the doctor is going to give you a clearer picture of the results. And my favorite solution for scanxiety for the day of a scan, use pharmaceuticals. I am a big fan of Ativan. Feeling chill and relaxed as you get put in a tube or injected with radioactive isotope is okay, just make sure you have someone to drive you.

If you have a friend or family member who has had cancer be aware of scanxiety, they may not have mentioned it, it may be all internal but it is real and it sucks.