Any tips for dealing with scanxiety?

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Just needing a bit of advice from someone with a bit more experience of managing scanxiety! And to park this somewhere.

I started chemotherapy and immunotherapy treatment in January, first CT scan to check how things were going in April. Cue the anxious wait from hell until I saw the oncologist. I was really wound up by the time I got to see the consultant, and was very surprised to be told it was good news, no evidence of disease. Pre treatment it was all doom and gloom and stage 4, one in six chance of stabilising it etc. In effect, I felt like I'd been given a death sentence. Although they didn't give me a sell by date, thankfully.

I've done a further 5 rounds of immunotherapy, had another scan and am now back in limbo waiting for results. No matter how positively I talk to myself, I can't get rid of the awful sense of dread I get, waiting on results. I'll need sedating for the visit to the oncologst at this rate. I try to tell myself it went well last time, you feel well etc, but I am getting myself very wound up again. Constantly thinking 'What if...' It is so hard to keep positive, yet I know that I've not had any evidence of disease since my biopsy in November. Hope is a tricky customer, I am frightened of feeling it. The last time I dared to hope, I was diagnosed, and that was pretty crushing. I know I should be grateful that things seem to be going well.

I've got to get used to this, the plan is 2 years on immunotherapy. I am definitely triggered the minute I get scanned, it's like a clock starts ticking in my head. In between scans I function normally. I can withstand the physical effects of treatment, it's the mental battle I have with myself that is the hardest part.

Any advice please from anyone who has been there? Thanks for reading, allowing me to dump my brain content here, and for any pearls of wisdom. 

  • I really cannot answer this, as such a lot of people get uptight, before results, it is only natural.

    I just go along with it, i think all the worrying in the world will not change my scan results, i have done my bit, treatment and scan, and i am making myself ill.thinking of what might be.

    I know when it starts up again what treatment i then have, i was told,

    I was stage 4 from day one, had same chemo as you are having, and i did two years same immunotherapy the same one your having.

    I finished entrapment 2018 and in 2022 i had 13 sessions  of radiotherapy.

    Take control and tell it to f off that is what i say to it.

    Hope others come along, and let you know how they deal with their stress emotions.

  • Thanks for responding Ellie, I'm so glad to hear about you managing the treatment and persevering with it. You are right, worry doesn't hurt anyone other than us. Waste of mental energy. Feel better about posting, it is an outlet. Some days you just got to let it out to make sense of it! It will pass. 

  • That is why the groups are here, to rant, have a moan, what ever you fill like at the time.

    Worry does not change a thing, trust your oncologist have faith in them, it is their job, to keep you going as long s possible.

    Glad you posted.

  • Hello! I was diagnosed last October as having mesothelioma NSCLS lung cancer. I too have been treated with Carboplatin and Pemetrex (together 4 cycles) And up to now, 9 cycles of Pemetrexed. But not the others you have mentioned.

    The way I deal with the anxiety is that I go very quiet and just keep on doing what I normally do. It's my battle so I just need to face it alone but of course I have the support of a loving family and friends who have learnt to leave me alone to get on with it. I can't deal with pity.

    This may not be helpful but it's my way of dealing with it. I do have a faith which helps me hold it together. I'm due to see my oncologist soon. And like you I daren't hope too much as just because I don't have the symptons associated with my cancer it dosen't mean everything is going to be ok when I meet up with him.

    Glad you felt you could share with us


  • Hi Judy, thanks for your reply. We're at exactly the same point in terms of treatment. I did 4 combined chemo and immunotherapy, and just had a further 5 immunotherapy rounds. 

    I think I just needed to write it down to make sense of it.

    Hope is a tricky one, it's important to try to keep it, but equally you also want to be ready for worst case scenario!

    Oncologist on Thursday, may ask him to shorten the gap between scans and meeting to make the wait shorter next time. 

  • Hi Newbie

    Just wondered if you have tried distracting yourself or mindfulness, yoga, breathing properly etc? Last week I went to a singing mantra class when I was down in Cornwall. I found that the hour went so quickly and have since found out that the breathing required is excellent at reducing anxiety. Anything like that that helps control breathing would probably help, Pilates, yoga, singing. Even when it’s only an hour it’s an hour out of the day when you’re not thinking about it. My anxiety was reduced for the rest of the day, felt so chilled. Other than that walking helps me and when I was in Cornwall swimming in the sea everyday though that’s not helpful if you’re nowhere near the sea! I did see that you’re feeling less anxious after writing it all down so that’s good news. What about keeping a diary? Sorry if I’m patronising you, it’s what I’d be telling myself 

    Jac x

  • Hi Jac, writing it down actually helped, it has improved my mood. You aren't patronising me - thanks for your reply. Unfortunately, I'm rubbish at anything mindful - I have ADHD - I can't sit still - lol! I think I might journal for a bit, try to balance some of those wonky thoughts! Helen x

  • I should have mentioned the things I do like walking my dog at least twice a day. Go to my excise class every Monday. I always have a coffee and cake out with friends or friend. And I read a lot now I have the time. So I just keep on doing stuff. 
    do you have any interests? 
    Judy xx

  • Yes, you know what you are right. I do take my dogs out twice a day, but for some reason I've not been for a swim yet this week. I usually go 4 times a week. I am letting my worries / mind run the show. And that's not helping! Thank you. I'm just journalling now, I do find writing to organise my thinking helps. My action plan tomorrow includes a swim, catching up with a friend for coffee and doing a bit of cooking which I enjoy. I've not been on this website in months, it is obviously one of my strategies, just having a natter with other people. I think if I keep busy that'll help. Thanks for taking the time to reply. Helen x

  • Glad writing it down helps you anyway. 
    Jac x