Scanxiety tips and tricks

Posted by isadora2021 @isadora2021, 2 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?

Interested in more discussions like this? Go to the Cancer Support Group.

j0318 | @j0318 | 1 day ago

In reply to @my44 "Hi, @j0318 Praying for a good report for your scans next week. 🙏🏼" + (show)

Thank you @my44! Sending you and Maisha best wishes for good health as well.🙂🌻

verena | @verena | 1 day ago

I deal badly with scanxiety. The last time, in December, was especially rough because I was not sure I would get the results before the holidays. I usually start to fret 2 weeks before the scans and it takes 1-2 weeks for the results to come back. Rinse repeat every three month . Which leaves 2 month between misery to try and live my best life possible. Not enough. Some things help: I am in a cancer specific online support group. I got such an overwhelming caring response to my “ dang scans over the holidays “ post, it helped a lot. I am okay to not feel okay, it does not mean I am not strong. I trust my medical team. Lastly, one thing about survival statistics is that they look back 5 years, I look forward. Best wishes to everyone here.

my44 | @my44 | 1 day ago

In reply to @j0318 "Thank you @my44! Sending you and Maisha best wishes for good health as well.🙂🌻" + (show)

Hi, @j0318,
Many thanks...from Maisha and me. 😊🦋

my44 | @my44 | 1 day ago

In reply to @verena "I deal badly with scanxiety. The last time, in December, was especially rough because I was..." + (show)

Hi, @verena
You make a good point. It's not just the anxiety leading up to the tests and scans. Waiting for the results is just as stressful. Years ago I'd had a breast lumpectomy because of a "suspicious" spot on my mammogram. I waited to get feedback regarding the results but didn't hear anything for quite a while. Meanwhile I became more and more anxious. When I called to ask about the results, I was told that the my surgeon had left for a vacation in the Virgin Islands right after my procedure, he would not be back for another week or so, and his office was closed. Can you imagine my level of anxiety? In any case, a very compassionate nurse at the hospital was able to contact someone who was able to call me with the results. Fortunately, the lump was benign. But the anxiety while waiting for that result was torturous.
To this day, I still have that period of anxiety while waiting for test and scan results. So, you're not alone in that. Hugs.

louisejewell | @louisejewell | 1 day ago

My anxiety occurs related to blood draws and infusion needles. All my appts. are in one day so I take an Ativan when I arrive and it relaxes me enough for pet scans and needles. My libtayo imunotherapy is tolerated well enough. I don't have many/any real side effects after 6 months other than frequent uti's, I guess w/my compromised immune system.

isadora2021 | @isadora2021 | 1 day ago

In reply to @louisejewell "My anxiety occurs related to blood draws and infusion needles. All my appts. are in one..." + (show)

@louisejewell I’m so glad to hear your treatment is going so well with very few uncomfortable side effects other than uti’s. You’ve hit on a great way of getting your tests over and done with and dealing with your anxiety and needle phobia while they’re being done.

isadora2021 | @isadora2021 | 1 day ago

In reply to @verena "I deal badly with scanxiety. The last time, in December, was especially rough because I was..." + (show)

@verena Best wishes ❤️‍🩹

You make a very good point about how long the period of scanxiety can last for, and the chunk it can take out of our “free time” between getting a good result and the next set of tests.

It is so helpful to be able to turn to others who totally get it during that time. I also belong to another support group and I love the way people do support each other both in celebrating each good result but also in providing positive testimonials from their own experiences when a bad result comes through to help push through.

There also seem to be so many breakthroughs in cancer treatments (eg immunotherapy and targeted therapies). I also try and remember that too, and have confidence in my medical team to be across them as they were with my HIPEC.

stevecando54 | @stevecando54 | 14 hours ago

I wanted to add, although I don't worry much about the data they are getting, I did want to mention the stress of some of the tests. I've had two MRI's,, not usually claustrophobic , but it get rough in that tube for me. The first time , the tech kept talking to me, was very comforting and relaxing. The second one, the music they play couldn't drown out that banging noise,. time was at a standstill and I did wonder at times if everyone went home for the day. Lately I've been going for CAT scan and that has been much better. I guess it's what we have to go through. Best to all.

isadora2021 | @isadora2021 | 14 hours ago

In reply to @stevecando54 "I wanted to add, although I don't worry much about the data they are getting, I..." + (show)

@stevecando54 You’re so right that the MRI tube can be very challenging and it’s very comforting to have the operator speak. The PET-CT tube is so much shorter, roomier and less claustrophobic.