Scanxiety

  • 6 replies
  • 42 subscribers
  • 952 views

Hi all.

i guess I’m not really looking for specific replies, I just want to know that there are people there who ‘get’ it. I have already been told that the cancer (THE cancer, NOT MY cancer) - DLBCL is incurable and I could have just months to live but with every course of treatment comes hope. In October I had radiotherapy on 3 tumours in my leg - groin, shin and foot - and I want to know how well it has worked and if it is anywhere else and if so where. I had a PET-CT yesterday. 2 issues. 1 is I hate waiting for the results. I always have some level of hope that they will find nothing (sometimes that happens) but 2, when I arrived for the scan she told me it was a half body scan. I queried it because I assumed they would be checking the areas that had had the recent treatment, but she said ‘I’m just the technician, I can only do what I’m told’. I was rather annoyed by this. Anyway i never know how to live my life when waiting for results. I try to carry on but part of me can’t. I hate the not-knowing. I am convinced I have it in my lungs. I have been short of breath for a while now. 

  • FormerMember
    FormerMember

    Hi  I think most of us can relate to this . Despite our best efforts there's a build up of anxiety around scans even though they don't always reflect how we feel. There's so much riding on the results.  used to say as we can't do anything about the results we have to try and deal with the anxiety. I know some people use the 'headspace' app for meditation and relaxation. I did a CBT course many years ago and find some of the practices very helpful when everything's running around in my head. Being breathless can raise your anxiety levels, there are lots of breathing exercises on line that might help.I had pneumonia and pleurisy twice in 2019 and still get breathless at times.

    I hope you don't have too long to wait for your results and that they'll put your mind at rest. It does seem odd that they scan didn't the areas recently treated. The technicians don't get the implications for us, I remember going for a scan to see if I was stable enough to go on a family holiday after a spell in hospital and a terminal diagnosis. The technician couldn't get a line in and said I'd have to go home and come back another day! Thinking of you xx

  • Hello Lellynelly. Waiting for results has got to be the worst part of our treatments. We all get so twitchy leading up to the scan then get even worse after it.

    At least the medical team are still investigating and then treating you according to their findings. This has to be good. We love a plan on here!

    I do find myself forgiving the technicians because if they deal with many people like me they would feel like changing jobs.

    Before I get on the couch I am asking what they will see, how soon will I find out and can I phone someone up for an early result! When the scan has been concluded I ask the same questions over again, it is no wonder they can become a bit curt. Compassion fatigue I shouldn't wonder.

    We all just carry on, no secret to it I'm afraid, but fingers crossed for good results.  Xxxx

  • Hi Lellynelly, Yes we all "get it" and no matter how long you survive against the odds, there is still that niggle in the back of your mind, "it could be THIS time"" However trying not to worry is the best thing you can do for yourself as it is not going to change the results after all!      It makes you anxious, gives you a headache, high blood pressure etc etc

    I wonder has anyone else noticed that just as scan time is approaching, we seem to get lots of niggly pains, in strange places, that convince us something is going on!!? At any other time we would just ignore them probably.

    I really sympathise with problems getting canulas in for blood or to get contrast dye for scans. My veins are so bad now (although they were never good) when they send me for Scans, they do the MRI and the CT on the same day, which means only one person has to find the vein and it stays there while a nurse takes me to the other department and is only removed once I am finished and ready to go home! I hope you get positive results.

    We fear the worst but hope for the best!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to Norberry

    Hi everyone

    My nine month from diagnosis scans are imminent and I was wondering if anyone was aware of C-19 cancellations or are all/most scans proceeding as normal?

    As much as this is the worst part of the process (the week or two leading up to the scans and the dreaded waiting for results) it can be an opportunity to breathe a sigh of relief for the time being at least...

    Thx in advance

    SiT

  • I should think it probably depends on the hospital and the pressures on them at the time. Its seems to be changing daily,  I think it may be down to a little  bit of luck.

    Hopefully with your scans so close they would have let you know if they foresaw problems?

    Give the oncs secretary a call perhaps? Best of luck.

  • FormerMember
    FormerMember in reply to Norberry

    My next infusion (14th) is next Thurs and onc calling on the Tues preceding so methinks I can wait until then - but thx

    SiT