Scanxiety

[margie1]

Hi

sorry I've not posted in a while but family issues have kept me busy But while I'm on the site may I ask if anyone gets scanxiety when they know their ct scan is due and while waiting for results? Or is it just me !

[patchworker]

Hi Margie, I don't get scanxiety, because I don't get scanned, I just get checkupxiety. I think my surgeon has xray eyes, he can tell if I'm ok by just talking to me!

[strangetimes in reply to patchworker]

I'd imagine it's only human to be anxious and I guess all of us ,having had our original shocking diagnosis ,will always live with a slight feeling of " anything could happen now ".

On a slightly different note ,I too am one of the unscanned . Apparently because statistics show it makes no difference to detecting future re occurence .

I wonder ,a great deal ,about which bits of the body would have to be scanned to catch any spread and where a reoccurance would/could happen . Presumably anywhere in the body ? In which case they'd have to scan the whole body ?

If the oesphagical cancer reoccurs where are the likely places ? Stomach - because original site was junction of stomach and oesphageous ( in many cases ,mine being one ) ? Higher up near the throat where a bit of the oesphageous was left ?

I'd really like to hear people's views .

[patchworker in reply to strangetimes]

My surgeon said if it comes back, it's likely to be stomach, liver or lungs.

[strangetimes in reply to patchworker]

Ok thanks ,that's interesting .

Anyone else get this guidance ?

Cue at attack of breathlessness .... -)

[haward in reply to strangetimes]

I didn't want to know!

[strangetimes in reply to haward]

Yes ,I can understand that !

Unfortunately my imagination is always worse than reality and is best kept in check .

[sms80]

I am simiar to patchwork, I am not given any scans, just "is everything ok" checkups every 6months. Now 2.5 years post op. My husband, who had bowel cancer 4 years ago has regular ct scans and, although he is fine before the scan, is like bear with a sore head waiting for the rsults.

[margie1 in reply to sms80]

I can relate to that I get very ratty lol

[Hidden]

'Scanxiety' is absolutely normal! My mother-in-law used to think that having a negative scan was effectively permission for her to live for another six months, but it is not meant to be like that. It does tend to crystallise all the fears about potential recurrence. Some people like the idea of periodic reassurance; others worry about it, and the latest thinking is that perhaps the whole thing ought to be more flexible, and take into account the individual patient's attitude to it. The thought is that we should ask for a check up if we feel anything has changed, or have a problem that needs attention or advice.

There is no guarantee that there won't be a problem with cancer again. Sometimes this does show up around the original site and the surgical joint, especially if the original tumour was in a very difficult position and it was impossible for the surgeon to apply the normal margin for safety. Sometimes it has spread, often by means of nymph nodes (which is why the surgeons try and remove a good number of nodes for safety), and sometimes it can be a completely new, different sort of cancer. The same principle applies to the original problem in that catching it early does tend to give more options about treatment; I know a number of people who have had more cancer found at check-ups and have been successfully treated.

I think check ups are another one of those mental resilience challenges that come back to test your strength of mind when you have finally got round to putting the worst behind you.

[paintersteve]

Hi Margie, I must admit I get the same as you , I get checked every 6 months ,, blood tests , so far all has been good , have another next week so I tend to get worried and anxious , but I must admit so far when I'm told all is ok the feeling of ,,, that's another out the way ,,, is bloody good and it gives me a nice lift.

[margie1 in reply to paintersteve]

I'm the same Steve I have to go for blood test before the scan too every 6 months it's the results that worry me but as soon as I get the all clear I'm fine until the next time

[hilr]

Hi, I am another if the u scanned, presumably based on the same hypothesis as the others. At my two year check up I had a CEA blood test and even got anxious about that. To make matters worse it took over two months for the all clear letter, by which time I had rung to chase results.

I think it's perfectly normal for us all to feel anxiety, about scans, about no scans and above all over whether it will return or recur. Still worrying rarely helps, so let's all try and live for today and celebrate every day that we've evaded this horrific disease.

And this site just gies to evidence how many of us do beat it! Hilary x

[spanner16]

Yes!! I'm terrible for that - it's crazy how I can live in contentment until I find out when my scan is due - but I have decided that I don't want to live my 'last' carefree days (if the scan is bad news) in fear and worry so I really try to live those weeks to my best and decide that the scan isn't the thing that will change the situation - so really try and think happy thoughts!! All the best!

[haward]

My first few checkups involved a chat with my surgeon, a poke with a stethoscope and a blood test. His view was that if it comes back "you'll know" and that a CT scan, which I requested , may do more harm than good (there is some US evidence of over use of scans actually causing cancer). I also had a rerun of my fitness check three months post op but the clinic insisted on a major cardiac check first. The blood tests were all clear and my next chat is in 12 months time.

When diagnosed I was told that I had a 60-70% chance of being around in five years time. That was the figure I kept trying to revisit. This time, two years and three months post op I was told that my chances were more than 90%! That was some relief.

[sallym]

I also have never had a scan since my operation, just relied on knowing my usual abnormal self. When things started to change recently I went to be checked out. A colonoscopy revealed a 5cm polyp pre cancerous which was completely removed. Knowing your own body and any changes to it can be more helpful than relying on scans and tests. It saved all the build up and anxiety. Having already had an extra 21 yrs, now looking forward to a few more without any further anxiety Trust all will be well when you get the results sally