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Ronny Allan
OPINION
The internet is full of blogs and articles about a subject which is described as ‘scanxiety‘ – the joining of the words ‘scan’ and ‘anxiety’. I also noted some authors using the words ‘scanxiety’ and ‘anxiety’ interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names – at the end of the day, it’s just anxiety regardless of whether it is waiting on the results of a biopsy, blood test, urine test, or anything else related to an illness. No-one goes around saying ‘blood-testxiety’ or ‘biopsyxiety’. Why just scans?
‘Scanxiety’ – I just don’t get it ……or more accurately I just don’t get overly anxious about having a scan or getting the results of a scan. Why? Because testing (scans in particular) is the one thing that’s going to keep me alive for as long as possible. I was diagnosed in 2010 thanks to the trigger of precautionary tests including a scan. I now live with the knowledge (and I accept this fact) that there are still bits of cancer inside me. If I am not regularly tested, there is a chance I will eventually succumb to a serious or irreversible problem which should have been spotted earlier. Even in the event of ‘not so good news’ following a routine surveillance scan, I still see that as a positive because it means the surveillance regime has worked and an investigation can be commenced to more accurately localise and treat the problem. Even if you are in the diagnostic phase and a scan is ordered, you need to get right inside that machine and get it over and done with. It just might save your life.
The test results will be what the test results will be and personally I try to save any worry until I know if I have anything to worry about.
Many cancer patients are under surveillance for a long time and are tested regularly. As an incurable cancer patient myself, I sometimes feel like I’m in a perpetual state of testing. I suspect if I was to let anxiety get the better of me, perhaps I’ll end up being a perpetual state of anxiety. That’s not a good place.
I’m not that insensitive to forget that some people do probably get anxious about actually climbing into a scanner, particularly if they are claustrophobic but that is already a recognised anxiety issue rather than so-called scanxiety. I also suspect people will be anxious about their relatives having scans, particularly the first diagnostic scan, worse when young ones are involved and I totally get that. Anxiety (as opposed to so called scanxiety) is a pretty natural reaction. However, to control your fears, you need to face them and then try not to let your anxiety filter down to others. I think people naturally and automatically try to do that without thinking.
‘Scanxiety’ – I just don’t get it. As for the 51,600 search results on the internet, I just don’t get that either!
Some people might think the above post is a tad harsh. If that rings true for you, please see this post published almost 7 years later.
Thanks for reading.
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Personally, I like the term “scanxiety” to describe the uneasiness that one might feel in the days leading up to a scan or while waiting for its results. “Anxiety” works too, of course, but I feel that “scanxiety” is more precise because it indicates the reason for the anxiety. For the most part, I’ve been at peace and have approached each of my treatments and scans with little or no anxiety, but I did experience some pretty intense “scanxiety” on one occasion early this year. I’d been having some symptoms which led me to wonder if my cancer was spreading or growing. Worry began as a little thing, but it fed on itself until soon I was carrying a heavy burden of anxiety. It was, of course, totally pointless as no amount of worry will change an outcome, but it didn’t help to tell myself that. Fortunately, my worries were unfounded and the test results were good. On a more recent note, I had my fifth Lutetium treatment yesterday and this morning’s worry free scans yielded excellent news… my primary tumour, which has been shrinking for awhile now, is tiny compared to its size at diagnosis two years ago and a second tumour has also started shrinking. The others are unchanged and there is no sign of new growths.
That’s fine, if it works for you 😁 But what next ‘bloodtestxiety’, ‘biopsyxiety’, ‘Injectionxiety’, ‘chemoxiety’. Why not just use ‘anxiety’ ?
Great news on the test result, I’m really happy for you.
Thanks!
I have to say that I try and take the same attitude as you, in that whatever the results are – I’ll deal with it when I know.
However, I still find that I worry in the days leading up to the scan and getting the results.
My first scan after treatment was in March this year, I wasn’t worried then because I felt so well that I reckoned I must be cured, unfortunately the opposite was true and my cancer had spread and no further treatment was available.
I put myself onto a regime consisting of diet and supplements (http://tryingtobeatcancer.org.uk/) and my scan scheduled for July was the only thing that would give me any indication that this was working or not. I was quite anxious about this scan, but encouragingly the results showed the spread of my cancer had slowed dramatically.
My next scan is tomorrow and I’m anxious again! I hope it backs up what the last one showed but if it doesn’t I know I’ll find it very disappointing.
So, I try not to be anxious but I know I’ll worry until I get the results in a couple of weeks time. If they are good I hope I’ll get a grip of my scanxiety fr the next one 🙂
Hmmm…every thing you say is logical but I think some people tend to be less rational when faced with the “C” word. I agree with you. I am the logical type. As for the word…..I think it’s just a play on words that people find expresses how they feel. It’s like when people call themselves carcinoid or net cancer survivors. That drives me crazy…. but, maybe they are expressing their hopes rather than the reality of the cancer being incurable. Also, “noid” drives me nuts. 🙂 Too flippant in my book but hey….everybody has to be themselves and I try to accept everyone at face value. 😀
Ed – I just don’t see the need for another word for something known for hundreds of years as “anxiety”. What next, ‘bloodtestxiety’, ‘biopsyxiety’, ‘injectionxiety’. As I said in another response, a trendy blogger noticed the two words joined nicely and used it. Sheeple then copied it and annoyingly use it interchangeably with anything anxiety which is clearly wrong. Those who understand and get my ‘modus operandi’ will have spotted the key point I made – i.e. there is a danger of being in a constant state of anxiety as a NET patient and that is simply not good for the person concerned.
p.s. I don’t like ‘noid’ either, it’s even more outdated than zebra.
Funny. 🙂 You’re right about everything. As long as they don’t call ME a “Noid” or a “zebra” then we’re good. 😀 as far as their own life. To each his own. 😀
I think the notion of scanxiety was developed and thrives in the context of a cancer that people “beat” (e.g. breast cancer), and they have a lot of anxiety at scan time because the scan may show that their cancer has recurred. If you have incurable, terminal cancer, a scan is more like getting your temperature taken when you are feeling sick. It is good to have the chance to have more information about what’s going on inside of you. I am more likely to get anxious the week after scans, knowing it will be two or three months before I get more such information.
thanks, I sensed it was invented in the breast cancer world. However, many people in the incurable world still get anxious for precisely the same reason but rather for the fear of constant recurrence and /or further progression. This is particularly the case with Neuroendocrine Cancers where people can live with it for years and be scanned around 2 times per year forever. Living with constant anxiety cannot be good for anyone let alone a person with incurable cancer.
I agree with you completely Ronny well said.
“Scanxiety” is that vague uneasy feeling I have between when the scan is complete on Friday and I receive the report on Monday. “Fear” is the Yikes! I need to crawl into a hole now! feeling I have when my husband approaches me with the latest credit card bill and says “Honey, we need to talk about your internet shopping….”. Seriously, though, I don’t think the word increases people’s fears, I think it just gives us another way to communicate that over-eating, can’t quite read a book phase of vague discomfort when you don’t know if or how your life is about to change. For better or worse, humans feel stress at the thought of change, and are better at adapting to it than they are at thinking about it.
I get what you say but I don’t see the need for ‘scanxiety’ as a word when we should be addressing something called ‘anxiety’
Thanks Ronny, I’m of the same mind as you, unfortunately, my wife is a bit of a worrier, and she can (especially if there’s a long weight for the scan, or other procedure) start to have a negative effect on me. I try to keep positive, but sometimes she seems to almost need me to be worried too.
Good point Jim, I did touch on the effect on relatives.
Reblogged this on Tony Reynolds Blog and commented:
Why you have to take the fear out of scan, it does not fit!
I hate an MRI machine. Absolutely hate it. I can do PET, CT scans but not an MRI. I have had 6 months of therapy to help me get inside an MRI and I still haven’t gone in one in 8 years. My last MRI was 8 years ago. Has nothing to do with results. I am very claustrophobic. Just because it doesn’t bother you, doesn’t mean it doesn’t bother someone else. I love your articles but I think you are being a little flippant on this one. Yes, I need to get over it and get an MRI and I guess I will ONE DAY. Need lots of drugs to go in that machine.
I’ve not done an MRI Teresa but I’m not claustrophobic so I don’t see it being a problem. I did register my empathy with claustrophobia in the blog. Good luck if you take the plunge 😊
I also don’t necessarily believe we need trendy words which only contribute to fear and confusion. I like precise accurate data that more than one person can agree upon. medicine is not just a science. It is an art and often subjective and evolving. My point I’m trying to make is that all we can do as patients is to gain as much knowledge about this disease as possible. blind faith can be just as devastating to survival as being so stuck in fear that that you enter into a phase of psychological denial.
Ultimately it’s about finding that balance and it’s very individual.
Finding a balance is important
Ronny,
“Scanxiety” is more tied to the anxious feeling caused by fear of what the scan will reveal and is the info reliable. And is complicated by the broad experience of many patients that the interpretation by the radiologist is highly subjective and contingent on whether the correct protocols are used. MRIs can be done on older 1.2 tesla machines and the patient may not even know it. ct scans may be ordered that are not triphasic and the patient could be told all is well when in fact all is not well. Some patients are given the incorrect oral contrasts. Patients typically are not given an opportunity to question radiologists directly. All of these factor into what is a very broad term of “scanxiety”.
Yes all of those things can influence the mind of an intelligent patient (most patients will not know of such detail). You could extend that argument to every single test and every single treatment but can a patient actually control all of this? No.
Why has ‘scanxiety’ been invented? There is no ‘bloodxtiety’ or ‘biopxiety’ or ‘chemoxiety’ etc. There has to be an element of trust otherwise paranoi creeps in surely? In this blog, I stopped myself saying that ‘scanxiety’ shouldn’t exist as a word and was invented by trendy bloggers who cleverly noticed the words joined together nicely. All they have done is to increase people’s fears.
Hi Ronny. I do sometimes get anxious before a scan – especially MRI. Not because of what it will reveal (although the last one revealed some growth) but the actual physical business – being inside the machine. I was fine up until a scan at the end of last year and just before I went into the machine I started to feel a bit panicky. I knew I could press a buzzer and they could remove me quickly. On that particular occasion my nose seemed very close to the top of the machine, even though I usually close my eyes. It took a lot of deep breathing and telling myself off to get myself calm. I got through it without pressing the button but the last couple of times I have got a bit jittery beforehand. The last MRI (in August) I was much better. But I know I have another one looming in November. Just have to remind myself that all will be fine!
I did hear they were very noisy. I’ve not had one but I’m getting one soon apparently
My feelings exactly. What will be will be. Better to know asap. I usually try to nap during scans.
great attitude. Napping is the best thing for an Octreotide scan but no fidgeting allowed 🙂
After 4 years of awful abdominal pain and treatment for IBS I eventually got a CT scan in 2006 showing large carcinoid mass in my small bowel and had approx eight feet removed. I have since learnt scans don’t even show up a tumour until they are a certain size and just because they don’t show anything doesn’t necessarily mean you don’t have a tumour. In January this year I had total hysterectomy and bilateral oopherectomy with tumours on both ovaries and other slight spread that was removed. During the operation the surgeon found a new tumour on my small bowel approx 5 mm in size. I recently had another scan that is clear even though we know I have actually got a NET slowly growing. I have no anxiety about scans or the illness itself. In 2005 I had another secondary on my lung which was resected which I recovered well from . I believe I will never be free of this cancer so just live with the knowledge these squatters continually invade my body and hopefully I will eventually die WITH the cancer and NOT from it.
sorry to hear about your late diagnosis, it would have been interesting to see what a scan would have shown earlier though? Do you think the small bowel the primary? Did they biopsy it? Seems to small to have done so much damage though? Apparently many people have small nodules of carcinoid which never cause any problems and are only found on autopsy. However, sometimes useful to get them out if found during surgery.
Sorry Ronny think I may have confused you…….in short my first diagnosis was March 2006 being carcinoid of intestines (ileum) quite large with secondaries in lymph glands. Had 8 feet of intestines removed and resection and was then fine. Biopsy showed carcinoid. Yearly scan in 2009 showed small tumour in lung, that also resected. Yearly chromogrannin A test in 2014 high and continued that way for few months and further scan showed tumours on both ovaries. During surgery for that,, January this year, surgeon noticed a further small tumour yet again on small bowel so did a biopsy that shows it to be carcinoid again. Therefore I know I have this tumour but a recent scan doesn’t show it because as yet it is too small. I live quite happily with it nowadays. It certainly isn’t worth getting anxious over a scan. At the end of the day it is just a picture of a moment in time which a week later could be different.