My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Saturday, May 23, 2009

Scanxiety

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.

9 comments:

Jill said...

I don't check on blogs too often, but I keep an irregular check on yours as I am fighting cancer ( breast )and I like your blog. This is a great post. My own experience is that I have to wait at least a week for results - and I'm seen privately ( we have a state NHS, and a private sector if you're lucky enough to have insurance here in England ) The wait for the result is bad, but I also find the time leading up to a scan a horrible time. And it seems the unconscious can't be fooled. This last time I was told I could wait longer between times - 6 instead of 3 months as I complained that I found it all very stressful and I've been stable for 2 years now. Despite this, at 3 months the worry and anxiety kicked in as usual. I get sensations as soon as my unconscious realises the times up - a mental alarm clock seems to go off ." OOPS, times up !! " it says. And little niggly pains and aches suddenly materialise to persuade me that there's a real possibility that the cancer's awake again. Isn't it such a waste of time ? Waiting for the scan and then waiting for the result. Scanxiety ! Now I have a name for it. Thank you !
And how insensitive of those clerks to put you through that scratting around for coins ! It's not a significant sum ! particularly when you think how much we pay one way and another for those scans. I'm so glad it was good news. I hope it is always the case and that the tests are just a reassurance of your health.
Jill B

Karen Ebert said...

Oh my, I forget how lucky I am. Even up here in the "north woods" of central Wisconsin, I get my scan results the same day, within hours. This doesn't eliminate the scanxiety (a really good word), but it compresses it a great deal. Thank you Marshfield Clinic for your speed!

And Carolyn - such relief for you. Such relief. But my heart goes out to your friend.
Karen

Anonymous said...

yes, oh yes, I know how this scanxiety works. Same with tumor markers....

My therapist doesn't "get it" why I'm still so scared.

Carolyn Langlie-Lesnik RN BSN said...

I have read that those of us with difficult cancer's like appendiceal, ovarian, pancreatic etc. have a lot of problems with anxiety, depression, post-traumatic stress disorder. I've known of several who have rightly sought counseling (I think it takes a very strong person to pursue mental health as well as physical health). I admire those people, but know they have had difficulty finding a therapist who can help them...we really need therapists who have walked our path and lived in our cancer world.

Anonymous said...

JUST found this website. My sister was diagnosed, just yesterday, with appendiceal cancer. Is there some way i can speak with you, via phone, and would it be possible for you to speak with my sister? Like you, she, too, is a nurse and has two kids (15 and 13) and she is scared out of her mind right now. She is waiting for a referral to MSK in NY (she lives in southern New Jersey, so the commute won't be hard). My name is Ronnie Polaneczky, my e-mail address is polaner@phillynews.com. Thank you so, so much for whatever help you might be able to provide us as we begin this frightening, surreal ordeal.

Anonymous said...

I just got my results yesterday from my last round of testing. The test was 3 1/2 weeks ago!!! I finally called the office and told them to nevermind my results....now I think I have an ulcer!! Anyway, the results are in and I AM clear for now. I was diagnosed in January of this year with appendix cancer. It has been an absolute roller coaster of emotions....you are good....BUT we want to do one more test....then one more.....good lord! I don't know if I should be happy I am clear for now, or if I should be dreading the next round of testing in 6 months.....scanxiety is a disease by itself. And Carolyn....congratulations on your results. Keep the faith sister!

Carolyn Langlie-Lesnik RN BSN said...

Anonymous whose sister was just diagnosed....you didn't leave an email address for me to contact you, but you can email me at carolyn@appendix-cancer.com if you'd like to communicate. I wish your sister the best....I know how tough it is.

Alice said...

I'm very fortunate with my scans. As an out-of-towner, my CT scans are scheduled at MSK in the morning, and my appointment with my oncologist for the same afternoon. I get my results the same day as my scan.

However, that does not lessen the anticipatory "scanxiety" which starts a couple of weeks before my scan. When is it coming back? Is this the time? Will I have to face surgery or chemo again?

Wishing us all clean scans!

Amc2288 said...

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