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Let's talk about scanxiety


Joppette

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Since my CT scan time is next week, I got to talking about the anxiety that seems to come with getting scans, whether we are fearful or not of "it" returning.

It's been 3 years and 7 months since I was dx. I do not live in fear of the disease returning. If it does, we'll deal with it, like any tough stuff that life throws at us. I don't want to waste days or hours or even minutes thinking about that possibility, and feeling fearful of it.

And yet, I must be honest in saying that the day of the scan, I am anxious. It's not the procedure that makes me that way. I lay down on a table/whatever you call it, they put in the IV, take pictures, squirt in the contrast, take more pictures and your done. But when they tell me I can get up, I have to ask for help, because I am always dizzy when I get up.

I'm not dizzy when I lay down and get up otherwise. It's not that I'm terrified, or anything dramatic. It feels like my sub-conscience self is thinking things that I don't even realize and my body tenses during the test which makes me dizzy.

I'm fine afterwards to. But after the last one, no one called me, and after a week my mind was nuts, and I called them feeling a sense of dread. Why didn't they call? Is it so bad they don't want to tell me? Those kind of questions raced through my mind.

The response I got was, "we never call unless we see something on the scan. You should just assume everything is fine if you don't hear from us." Bull! I asked her if she ever had cancer, to which, of course, she said no. I told her that if and when she ever does, she will call patients back with their results.

I will politely but definitely insist that they call me back this time, no matter what!

What do you think?

Judy in MI

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My CT scan is coming up the first of March and yes I get scanxiety every time. I have mine done at the local hospital and then a week later have an appointment with my oncologist for the results. A year ago I decided that I was NOT going to wait a week to find out the results. Even if it's bad news I'd rather know than just worry. So I asked my hospital if I could get a copy of the results and they said yes. The same afternoon that I have my scan I go back and pick up the results and don't have to worry another week.

Paulette

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I have my x-ray coming up in February as well and always get that scanxiety. Usually I have to wait between 10 and 14 days for my results. I notice every little ache and pain during that time. I don't feel quite as bad this time. I had an x-ray on my back in December and the radiologist noted that there were no metastic lesions to be seen. I will still get the regular x-ray because they compare it to a previous one and can notice any subtle changes. But it should help with the scanaxiety.

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Judy - I think I want to be as almost anxiety free as you! I am still only about 1 and 1/2 years out from my second surgery. And even now I could work myself up to a good panic if my arm doesn't feel better (even though I know it's muscular from getting up close and personal with the ice). Doesn't stop the worry.

As I read your story about the scan I actually thought it might be more of an "over-whelming relief" rather than an anxiety since it happens right after the test. I know they don't monitor your blood pressure when you get a scan but it might be interesting to have it done "at rest" before the scan and "at dizzy" immediately after the scan. So ask some blood pressure like questions - is this the only time you lay flat and then get up quickly? (Don't try this at home though...) something to think about anyway.

Annette

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I'm 15 years out from my cervical cancer but I still get anxiety when I get my yearly tests and with every blood tests. The percentage was very high that it was supposed to come back...even told to expect a full hysterectomy and radiation within two years....but that never happened....every year at test time I worry....

I get yearly ct scans now too...and just recently got an X-ray to check for pneumonia....each time I sort of catch my breath and there's wonder and worry until I get results. With the CTs I always wonder if this time genetics kicks in and they will find something in my lungs....

I've gotten very good at worrying alone and not showing my fears to anyone...

I think it's just something those of us affected by cancer have to face.

Hugs

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I do not live in fear of the disease returning. If it does, we'll deal with it, like any tough stuff that life throws at us. I don't want to waste days or hours or even minutes thinking about that possibility, and feeling fearful of it.

That's been my attitude all along. I just don't get worked up about it. If it's bad news, I'll deal with it then. Until then, I consider myself cancer free.

Of course, I'm also the one who wasn't worried when they called me in for a CT scan before my lung cancer diagnosis...

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I have had Pap smears of "concern" on and off for as long as I can remember. I live in Canada and very little is quick with out medical system. I had a Pap just before X-mas and was told to call in for the results before the end of January. So it's the last Wed. of Jan. and that's when my gynecologist works at the gyn. clinic at the hospital where I go for my Paps since he always does a colposcopy too. It's on my mind on and off since Christmas (only on and off since I had a "procedure" in August and I really thought all should be good this time at least) but that morning, my heart is beating quickly. I swear I could feel my blood pressure up. I do feel dizzy. I call shortly before my class comes in for the results and get shuffled through 4 hospital nurses till I arrive at the correct one. She tells me that the test came in but Dr. A. has a busy day and will return calls between 3 and 5. I know that's going to be a long anxiety filled day and I'll have to really work at being extra patient with the kids (and teachers around me in some cases, even the ones I like who want me to undertake extra things when I have a one track mind). I give them my cell no. and say I'll have that on at 3:00 and mention I'll be at my home no. by 4. OOPS - I realize later, we're not allowed to answer our cells anymore if we're driving. What if he calls between 3:30 and 4:00. So it goes on. Finally talked to the doctor and all was good -- this time.

I also remember waiting for my Dad's scans and it was pure "hell". Most of the time I waited 3000 miles away so I'd get the info. from my sister. I used to put on videos for the class that day around the time I hoped the email would come in so I could sit at the computer and compulsively check my email.. Oh, it's not easy.

I don't know why most hospitals/doctors don't have a system in place where you can get your results ASAP. Waiting for scans definitely has to have a toll on your health. It's the worst jumping for that phone every time it rings.

I don't post very often but I come to this site each and every day and say my prayers for all of you. I hate this disease.

Gail p-m

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I have taken scanxiety to the extreme-for several years after my diagnosis and treatment, I could not even go to work for the week before the scan. I always have my appointment on a Wednesday, and I would take vacation days for the week leading up to the appointment.

If I was at home and controlling my environment I was better, but at work, when you never know what is going to happen, i was just too on-edge to cope. I would walk out of work every afternoon in tears just from the pressure of having to keep it together.

I took xanax as needed, and sometimes, the only thing I needed was to know I could take something if I got too anxious. I still have a bottle in my cabinet, but I haven't touched it for about 4 years. I just feel better knowing it's there.

Of course, I hate that the whole thing gets to take over my life like that for all those days every year, but I don't know how to control it. Last year, when I wasn't working, I was feeling pretty confident leading up to the appointment, and I really didn't feel extreme anxiety like I had other years. I hope this year goes like that as well.

I have no solutions for this--I think it just comes with the territory. It is not in my nature to take things as they come. If I can worry about it, I will!

Luckily, at my clinic, you get your scan or xray prior to the doctor's visit, which is the same day, and then the doc gives you the results during your visit with him.

Judy, I would never stand for the old, "If there's a problem, we will call you-otherwise we don't call" part. First of all, things have been overlooked in doctor's offices in the past. I don't even know if that's legal anymore. Weren't there laws passed about mandatory notification of test results because things were slipping through the cracks?

In any event, I would take the proactive approach and not depend on them to call you, but call them daily until the results are in and you have them. There are a lot of people who just don't get it because they haven't been through all this.

Cindy

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Wow, some of you guys have it so together at scan time. I have tried to tell myself that "what will be will be" and so on, but it just doesn't seem to work.

Cindy ... I can relate totally to the work thing. The last couple of years I was couldn't concentrate at work and felt totally inept as I wasn't sleeping well for the week prior to the test and then waiting the 5-10 days to get the results from my surgeon in Edmonton. This year I am hopeful it will be better as I am only self-employed at home now and set my own hours. As long as I'm not doing tax prep or paycheques I should be ok :) .

Paulette - you and I are the same - I was always waiting that extended period of time to get the results...so nervewracking. Anyhow, now I have the scan appointment (usually on a Wednesday) and then I make an appt. with my GP for 2 days after that. I still go see my surgeon, but I don't have to wait the extra week or two to know whether I have anything to be worried about in the first place. I can't see ever getting same day service, but I am happier with this arrangement than the one in the past. Good luck with your upcoming scan-keep us posted.

Judy - I never get dizzy before or after the test, so perhaps it is a blood pressure thing like Annette said? As to the "don't call us we'll call you" I worked in a surgeon's office and after one very close call of something getting filed by accident (the doctor unaware of results) that practice was changed immediately as humans can make errors and things do get missed (certainly not maliciously-it just happens). I ALWAYS get a copy of my reports too as I like to read for myself that I was told everything. I sound paranoid, don't I?!?

Bruce - good luck with the upcoming x-ray...keep us posted.

Katie - glad all was good on your end. Congrats on 15 years out...whoo hoo!

Bud - I have to work on getting myself to that Zen state like you and Judy. I know it's my mind, and I try to be reasonable, but then all reason flies out the window and I am left with a scared and nervous shell of myself. I think I truly believe I am cured, but in the back of my mind there is always that comment "With BAC it is not unusual to have it return 5, 10, 15 years later" ... that comment is always there and I don't get the all clear at 5 years. Oh well, I am fortunate that I have these years to worry about it.

Gail pm - glad your results were good too. I was sitting on the edge of my seat reading your post - the health care professionals only have to experience what we have and they would have a much different attitude, wouldn't they.

My scans are until May, and trust me I will be shouting out for support and love then.

Linda

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Judy I have you in my thoughts and prayers. What day is your scan? I am on 3 year 9 months since dx. We must have been diagnosed around the same time.

I have major scan anxiety right now. I go for a scan March 8th and I am already not sleeping and needing sleeping aids. I do not do well with it. I have already shut down and I pretty much stay to myself praying I can keep my composure every day at work. I wish I could have Bud's and Judy's attitude about it but I just can not get over the fear of my cancer coming back. Exercising does help but I don't seem very consistent with that.

Well enough of that, phew I feel better now...

Libby

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