I found this article from the Philadelphia Inquirer “Beset with ‘scanxiety’, cancer patients feel a psychic pain” . I’ve come to learn within the cancer community a new term, “scanxiety”. All of us with appendix cancer have experienced it.
The article talks about “these tests that spy on cancer — telling patients when the disease is dormant and when it’s growing — give life a new emotional rhythm. For most healthy people, feelings pivot a little with unpredictable daily experiences — the grumpy boss who snarls an unreasonable order, or a friend who calls with a funny story.
But in the parallel universe that cancer patients and their families inhabit, CAT and PET scans, MRIs and blood tests, divide a life in regular increments of life-and-death fear, of ever-evolving hopes, and “new normals.” Every six weeks or three months or year, people find out whether they’ve hit another fork in the cancer-treatment road. Whether they’re closer to a cure. Or death.”
Cancer survivors really do live in a “parallel universe”, and our lives do involve life and death fears. I think now of days past when I was nervous giving a speech, taking a test, flying on a plane, starting a new job or losing a job in my “old normal” life. Cancer testing makes all of those fears trivial.
Cancer testing is essential, because the earlier we detect a recurrence the better chance we have of fighting it; but we all know our odds of survival decrease with recurrence. And we all know the potential for a test result to signify the end of our lives. I’ve always kind of felt waiting for a CT result was like waiting for a sentence from a court of law. Someone else will decide the course of our life based on the test results, and every test has the potential to be a death sentence.
I recently was having some pelvic discomfort (right side where my primary tumor had been, no less) at 8 years out. But I minimized it, as at 8 years out I was probably done, maybe even beyond remission, maybe even “cured”. Then a signet ring appendix cancer patient’s friend wrote me. Her friend was an eight year cancer-free signet ring survivor, but the disease was back, back in a big way. She’d had a massive surgery to attempt to remove the new tumors. So, I was back feeling vulnerable again. I had decided to quit CT scans and the vulnerability that comes with them, but went for another one after receiving that letter.
I’ve lost count of how many CT scans I’ve had.
It never gets easier.
I left my 12 hour midnight shift after my last CT to stop by the hospital medical records department for the scan report. I was in the medical records department in the basement; heart pounding, hands shaking waiting, waiting for my reports. It never gets easier. I heard the reports being printed. I asked, then, with trembling hands, to see the scan results. Then they told me I needed first to pay 25cents per page. I only had a few nickels and pennies in my purse, no green money, and a debit card. They didn’t accept debit cards. I was trying to decide which single page I could afford….maybe just the end page with the “impressions”. But they weren’t going to give me the report until I paid in full ($1.25).
I told them I was a cancer patient and the words on those papers would let me know if my cancer had come back, if I could plan my future. They were important to me. I was almost in tears (heart still pounding, hands shaking). They finally told their staff to give me the report for what pennies and nickels I had, they would be enough.
There were no masses, no tumors noted on the scan. Whew.
We need to develop tools to deal with scanxiety. Distractions work well, I’m sure to schedule long shifts at work while waiting for my scan results (12-16 hours). I keep amazingly busy after a CT scan, I find that helps a lot. I keep people around me; do things that require my brain to think of something else. An absorbing novel is good too.
I’m not good at waiting anxiously for a week or two for a doctor’s appointment to find out the results, so I get my own results from the hospital medical records department as soon as I know they are available (usually within 48 hours). You can do that…they are yours. You just sign a release.
I’ve learned to schedule CTs on Fridays and to go pick up the results at the hospital medical records office on Mondays. Then I don’t worry about hang up phone calls as on weekends as I know offices are closed and results still being typed up, so I don’t have to worry that someone hung up as they couldn’t leave the bad news on the answering machine as it would violate HIPPA law.
Of course, as one patient in the article said…”Ativan is wonderful, at least you can sleep”.
Maybe one day, as they have done locally for breast cancer patients at a hospital near me, they will have CT scan reports available at the time of testing. We’d still have scanxiety, but only for minutes instead of days and weeks. A breast cancer patient told me once about the terrible anxiety she felt during the 10-15 minute wait for her mammogram result. All I could think of was what I would give for ONLY a ten minute wait.