Scanxiety tips and tricks

Posted by isadora2021 @isadora2021, 3 days ago

I was declared NED for stage 4 appendix cancer in mid 2022 after diagnosis in 2021. Treatment was brutal. I came through pretty much unscathed. Very lucky.

Since then I have regular PET-CT scans plus CEA blood tests. Initially that was 3 monthly but is now usually 4 monthly (but I’ve had one occasion when tests were brought forward to 2 months because something was not the same in my scans). Turned out to be nothing to worry about but just some inflammation in my colon resection site.

In a sense I now live 4 months to 4 months. My next tests are due next week and I can feel my anxiety rising, including in my dreams.

I know things can change for me “just like that”. My cancer isn’t curable under current science. I could have died “statistically” some time ago, but I plough on, making the most of each and every day. I’m doing well - except around scan times.

How do you all deal with your scanxiety?

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Hi, @isadora2021,
I understand the anxiety surrounding upcoming tests and scans. I, too, struggle with that.
I hope that you can get some relief from this current bout of anxiety and pray that your upcoming tests next week yield good results for you. 🙏🏼

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@hopenjoy2024

I am sorry you are going through this. I believe is distract, distract, distract. The mind can only focus on one thing at a time so staying positive is #1. Unfortunately, the subconscious is harder if not impossible to control (but hey, if you have/had cancer you learn about the lack of control quickly if you are to get through it). Even talking about it helps because I realize I are not alone and it does take the focus off me. And the dogs, talking about living in the moment and pure joy and love.❤️

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@hopenjoy2024 So true. I think I do need a therapist to be able to talk freely. I think my family are in denial that I could possibly get sick again! I am so well. I can totally understand where they’re at. They went through my bad time with me and want to leave it in the rear view mirror. I wish I could keep my eyes focussed ahead too. I usually do - except around scan times 🥹

Finding the joy each day has been so helpful through treatment and recovery. I think that’s the thing: to focus even more heavily on that on the Scanxiety days.

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@my44

Hi, @isadora2021,
I understand the anxiety surrounding upcoming tests and scans. I, too, struggle with that.
I hope that you can get some relief from this current bout of anxiety and pray that your upcoming tests next week yield good results for you. 🙏🏼

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@my44 Thank you and the same to you 🙏❤️‍🩹

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@j0318

This post is well-timed and appreciated as I have my scans again next week for CNS lymphoma to ensure there is continued remission. Thank you @stevecando54 for sharing a great mindset for this issue that so many of us deal with. I agree that knowing my doctor is keeping an eye on my current remission and that he has a plan for any recurrence is all I can ask. Below is a great comment from a post by @kt2013 about survival statistics that I saved in my journal because it is so inspiring:

“One thing I learned and held dear was that the prognostic/survival statistics they share with you belong to other people….your story hasn’t been written yet. So, I my head, until proven otherwise, my survival was 100%.”

Sending best wishes to all for the best health possible.

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@j0318 Wonderful attitude. Prayers for good results and thank you for sharing 🙏❤️‍🩹

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@lisay1

You are such a trooper and so strong. My cancer was nothing compared to yours. I'm sorry I don't have any great advice but keep up your positive attitude. I prayed a lot and did not think about the future. Today is today and I try to make the best of it.

Sending you hugs and strength. Keep fighting! Your amazing! 🌺

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@lisay1 Thank you 🙏 I think that’s the thing - to focus extra hard on just the here and now when the Scanxiety kicks in.

I have a great medical team who have been with me now for a few years. That helps too.

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@isadora2021

@my44 Thank you and the same to you 🙏❤️‍🩹

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Thank you, @isadora2021.

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@isadora2021 You have had some great replies to your query, haven't you? It's definitely a mind-body connection, in my mind.

Today I had my monthly testing with both my oncologist for multiple myeloma, and my dialysis clinic for their own review. Two appointments, two blood draws, two sets of results. This happens each month. There are certain numbers I go to first, as they are the most important. I keep a spreadsheet to log all results, and watch trends. Do I worry about what each month will show? Absolutely, no doubt about that! But I know that keeping ahead of any potential problem is important, and my two specialists speak to each other to coordinate my care and treatments. What I do about the anxiety is knowing we are balancing a fine line, and watch to do what I can by eating right, moderate exercise, journaling my thoughts, sharing my experience with those who want to listen. We are each teachers and learners!
Ginger

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@gingerw Absolutely. People have been wonderful in commenting. It’s such a great safe community.

Oh my goodness, Ginger. That’s amazing and I am so inspired by your attitude in dealing with your situation including monthly testing. I hope you continue to stay on top 🙏

I was so glad to be done with the fortnightly blood draws during treatment. I must confess I never checked my results and I told my oncology team just to let me know if we might be heading towards 2nd line. I still don’t read my results ( blood or PET-CT) myself and meet with my oncologist after the tests for him to say there’s nothing or there’s something! The routine of catching the train and walking through the hospital to the medical centre is calming in a weird way.

I have been surprised at my hands off approach. I am normally someone who likes researching and analysing information - the more the better. When I first saw the statistical prognosis for my diagnosis on Dr Google I headed in the total opposite direction and “decided” I would be fine. The resultant peace and lack of stress was tremendous. Also in my job people paid me a lot of money to take on their business problems, do the worrying for them and fix them. I am reversing that now!

I don’t know why I can’t be in the same headspace now I’m in remission! It’s weird.

I do continue to control what I can such as my diet, exercise etc. You’re so right that to do so is so important.

Thank you for sharing. It is very inspirational.

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@isadora2021

@gingerw Absolutely. People have been wonderful in commenting. It’s such a great safe community.

Oh my goodness, Ginger. That’s amazing and I am so inspired by your attitude in dealing with your situation including monthly testing. I hope you continue to stay on top 🙏

I was so glad to be done with the fortnightly blood draws during treatment. I must confess I never checked my results and I told my oncology team just to let me know if we might be heading towards 2nd line. I still don’t read my results ( blood or PET-CT) myself and meet with my oncologist after the tests for him to say there’s nothing or there’s something! The routine of catching the train and walking through the hospital to the medical centre is calming in a weird way.

I have been surprised at my hands off approach. I am normally someone who likes researching and analysing information - the more the better. When I first saw the statistical prognosis for my diagnosis on Dr Google I headed in the total opposite direction and “decided” I would be fine. The resultant peace and lack of stress was tremendous. Also in my job people paid me a lot of money to take on their business problems, do the worrying for them and fix them. I am reversing that now!

I don’t know why I can’t be in the same headspace now I’m in remission! It’s weird.

I do continue to control what I can such as my diet, exercise etc. You’re so right that to do so is so important.

Thank you for sharing. It is very inspirational.

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@isadora2021 You're welcome! It is a 2.5 hr drive each way for me to get to those appointments. I usually am able to coordinate them onto one day, to avoid unneeded miles on me and my car ;)) That drive time allows me to hash and rehash a lot in my mind. There have been a few times when I stop and do some writing.

Analyzing, recognizing trends, understanding the how and why a set of labs might be "off" makes it a challenge to me, and helps offset the scared feelings and all. My case is an admitted "complicated" one according to all my team, and the more information I can get, the better, the fewer dark corners.
Ginger

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@gingerw

@isadora2021 You're welcome! It is a 2.5 hr drive each way for me to get to those appointments. I usually am able to coordinate them onto one day, to avoid unneeded miles on me and my car ;)) That drive time allows me to hash and rehash a lot in my mind. There have been a few times when I stop and do some writing.

Analyzing, recognizing trends, understanding the how and why a set of labs might be "off" makes it a challenge to me, and helps offset the scared feelings and all. My case is an admitted "complicated" one according to all my team, and the more information I can get, the better, the fewer dark corners.
Ginger

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@gingerw That’s a big drive and a good time to think. I totally get why following and understanding your test results would be so very helpful to you in dealing with your complex situation. Maybe when mine does come back (hopefully years from now) that will also be my approach too. I have learnt how flexible we need to be to deal with the swings and roundabouts 🙏

We both have our routines which help us cope mentally. It would be interesting to know what routines others have too.

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