Recurring follow up scans, dealing with the buildup of anxixety

[lofwyr]

Hope everyone is doing well.
I had a question for anyone monitoring a condition with scheduled tests, whether it is annual, monthly or what have you.

I am coming up on an annual scan to check and see if I need surgery on my aorta and aortic valve yet. It will happen, but it could be this year, it could be ten years.

I find as I get closer to the annual scan, my anxiety ramps up. It is not really fear of the surgery, so much, but general fear of the unknown. I find myself putting all post appointment plans on hold, just in case. I find it essentially shuts down my life, and puts it on pause, because if this is the year, I will need three month recovery time minimum. I plan, project, and anticipate hundreds of possible outcomes, and really struggle to put what ifs aside.

Anyone out there have a sword of Damocles hanging over their head, and found a good way to deal with it? Really struggling this year to feel normal and carry on normally. CBT stuff seems harder to apply this year than last, and I am not sure why. I was actually super calm last year, now I am really ramped up with worry and can't really decipher why. Not much has changed, and I have no more reason to worry this year.

[RadioGaGa]

This is somewhere I'd be a bit out of my depth in that I don't have any chronic illness which requires monitoring.

However as I work in a hospital with a large cancer centre attached to it, this is known amongst them as 'scanxiety'. This occurs even in those without health anxiety, so imho unless you're worried 24/7 365, this isn't really a symptom of health anxiety - or need to be treated as such.

It's perfectly normal to worry about an upcoming scan or procedure, even if you don't have health anxiety!

Hopefully Fishmanpa will be along to answer this question, as I think he's had experience with this and will be able to offer better words than I can

Good luck

[Shadowhawk]

Hey lofwyr!

I am really sorry to hear the anxiety is getting worse; hopefully we can help out.
While i can't say my worry is as strong as yours, i go understand the anxiety and thoughts that go into upcoming tests (also my heart, and monitoring my LVH). Even though we don't have a specific reason to worry (no new symptoms, nothing has been worse), we are able to create scenarios in our head where we fear and expect the worst, and the anxiety follows.

If i can, perhaps what may help is a slightly different perspective. Look at all of this from two ways -
1) On the good side, your issue likely hasn't become worse, and you have been able to (hopefully, but again, i know anxiety) enjoy life despite things. You are a walking success story, in that you haven't let this slow you down, and you keep right on going

2) Visualize the end result - once this is all said and done, it will never be a worry again. You can go through life without it hanging over your head, and things will be better for you. The surgery may suck, but its worth it in the end, and will lead to a better life overall.

That said, the problem is now, you (like me with some of my problems) are stuck in limbo (the sword being an excellent metaphor). Because of the inherent risk from the problem, you can never let yourself truly be at ease, nor do you know when you will get the relief from being able to have the surgery. I really can sympathize, and would just reiterate to try to keep the day to day in perspective; live the good life you have, and try not to let the future and stress overwhelm you.

Sorry if that wasn't any useful advice, but i hope at least a friendly voice might help. Hang in there, and keep on fighting. You got this. :)

[pulisa]

Very helpful advice from both of you for what would be a worrying time for anyone regardless of whether they have HA or not.

I suppose the fact that you have an annual scan is reassuring in the fact that you are "allowed" to go all this time without repeated checks? I think it's only natural that you should bear in mind that there is always a possibility that this time you will have to plan for surgery so sort out that plan in your mind and then "put it away" until your actual scan and go from there? Then you'll be in control of any practical plans and can concentrate on your surgery and recovery. You can't influence the scan results and it's always the unknown which is so frightening so maybe you will feel better just having the scan and then dealing with whatever is advised..

It's very hard though and I do empathise with you. I'm coming up to my 6 monthly scan for a minor issue which may need surgery but hopefully won't.

[NervUs]

I used to have to get imaging every 3 months for a chain of nodes that appeared benign but could have been lymphoma or mets from breast cancer. That went on for 2 or mor years.

I think the best thing you can do, if making plans is a problem, is to make them. I used to get the same way and think I have no future so why bother. But, eventually I realized making plans was challenging the catastrophic thinking. And really, what's so hard about canceling if you have to? I think that little switch in perspective is a big FU to anxiety and it does help with mood and being able to function. Good luck!

[Fishmanpa]

"That's what I called "scanxiety" and I went through that every three months for two years and every 6 months for a few more pertaining to my post cancer check ups. After the cancer, I did some one on one therapy and practiced some CBT techniques and that helped but I was also given a non SSRI (Buspar) and a low dose chill pill that really helped around appointment time. For me, the key was keeping busy as idle time meant rumination.

Positive thoughts

[lofwyr]

Thanks guys, everything you said makes loads of sense. I brought in some CBT stuff today, and it helped quite a bit. Also, the bit about planning as combating catastrophizing really struck a cord with me, so I doubled down doing the Just In Case stuff, better to be prepapred than not.