How do you deal with scanxiety every three months?

[Jpl5036608]

Just need guidelines or help

[Barbteeth]

Hi there

I can’t deal with it...for me it gets worse as I’ve had a few where there’s been progression and I’m terrified every time what the results will be

I think it’s something we have to accept as it will always be there

Even after a good scan result I’m then panicking about the next one

Maybe other ladies on here deal with it better than me...wish I could

All the best

Barb xx

[Barb5 in reply to Barbteeth]

Agree

[diamags in reply to Barbteeth]

I'm about the same. It never goes away.

[mariootsi in reply to Barbteeth]

I am the same way Barb!

[Sky_Writer in reply to Barbteeth]

I'm usually okay until after the actual scan. I get a lot of anxiety over the review and waiting for the report. It's not better, I just don't react until afterward. Then it's worry worry until I know exactly what the status is.

[Aimee95]

I agree with Barb. You never get over the anxiety of them. I have been very lucky with scans lately-no progression...I know I should feel relieved and not be so pessimistic...but I also know I am at just about the time (24 months) when this line of treatment will fail and I will have to progress to the next toxic cocktail. I have been told I need therapy....perhaps but I am also a realist and those that tell me I need therapy do not have a terminal illness hanging over their head like a big blinking neon sign. I am due for scan in late August and have been having scanxiety since I got my last results in April. I apologize for not having a more uplifting response. I am certain others will have a better one. I do take comfort in knowing I have all of the wonderful ladies on here who know what I am going through. Hugs ♥️

[Jpl5036608 in reply to Aimee95]

Reality is good to hear too!

[mariootsi in reply to Aimee95]

I take solice in this group too!

[Timtam56]

Hello Jpl.

I am 2.5 year person in the knowledge of mbc.

2 years on treatment. Ibrance and letrazole.

I just had an appointment where I’d waited two weeks after my scans. Last Friday I received results.

It wasn’t hard at the beginning. But by the beginning of the second week it had become very difficult. It’s been a longer wait because of covid and all the mess around times and ease of going in Etc.

Because I’m doing well, I feel lulled into a sense of security that is not false ........ yet. Hopefully it will stay this way for some time yet. That’s how I look at it. It’s how I get by.

And yes. My onc told me, I’m stable yet again.

I think we are all different. And our level of anxiety is different.

Take care. And just be yourself in all this.

You are unique.

[mariootsi in reply to Timtam56]

Glad you are stable!

[Hidden]

Hello!

I also suffer from extreme scanxiety...not only the pre and post wait, but much more acutely re: the scan itself...I'm needle-phobic and claustrophobic, so I need a small fistful of xanax (which is kind of enjoyable) to get through the scan.

Re: the waiting parts...I'll share my experience/what works for me, not sure if they're "guidelines" and of course everyone is different...

Needless to say, I'm always kind of anxious/antsy/kind of jittery pre and post. But it's not an entirely negative feeling, I look at is more as "big things are afoot..maybe good, maybe bad, isn't life exciting!". I give myself those days "off"...zero expectations...and treat them like a vacation. A bit of self-indulgence, float in the pool, make a pina colada (sp?). If I have reason to believe that results might not be great, which was the situation prior to my most recent scan, I convince myself to enjoy TODAY, it could be the last one on this plateau, feeling this well, etc. Maybe like really appreciating what might be your last day of work prior to layoffs or your last day before a child goes off to college...

Now that your good question has made me think about it more, I'll add that I used to try to distract myself...I found this completely ineffective. I've done much better since I started to almost over-process it...thinking about how next week (after) might be different, getting comfortable in that scenario, etc.

But, again, and obviously, e-v-e-r-y-o-n-e is different, has a different psyche, etc. So I guess my only real suggestion is to deliberately try different things until you find what works for you? And even with that, it's horrible...the waiting is the worst part!! (It just occurred to me that I'm much more stressed waiting for labs, in large part because I know it's unnecessary (my current place delays them for days, whereas most places post on the portal really quickly...so I think it might be a control-freak issue)).

I'll also note that in a lot of ways it gets better over time, especially if you're stable, you know your body, and maybe your labs look good in between scans...Then it's like being ready for the big test...A chance to prove how well you're doing...

I hope your scans (upcoming and in the future! ) go well...

Lynn

[MyMiracle13]

I am actually very anxious at the moment since I am due for blood tests next week. Waiting for the results is even worse. I believe that with MBC, we will have to live with scanxiety for the rest of our lives. To alleviate my anxiety, I pray. I’m a believer in God’s mercy. Praying doesn’t totally take away the anxiety but makes it bearable. The scans and blood tests are definitely ordeals we have to go through every 3 months. I have to be honest with you and tell you that when the anxiety gets so bad, I pray for God to take me because I can’t deal with the anxiety anymore. Not knowing how many more years we have to experience anxiety and the roller coaster ride of hearing good news and bad news makes it worse. Yet, I am still here so I believe I am here for a reason and that it’s not yet my time.

And it’s only on this forum with all these wonderful people that I get to share what I really feel. Not just physical but emotional pain. Somehow, even our closest and dearest do not understand the gravity of our pain. Thank you everyone for being here - understanding, caring and loving❤️

[mariootsi in reply to MyMiracle13]

Thank God for this wonderful group of women.

[Rhwright12]

Hi! I’m 4 years this month...I’m bad! It became to much...So about a year and a half ago I moved Onc to every 9 weeks. Scans to 6 months. And I get my scan results in 24 hours. It would drive me batty waiting 2 weeks as some do! (I’d need Prozac to wait that long) I also buy myself a scan outfit...I mostly wear jeans so I buy myself a little Nike jogging pants and sports bra to wear during scans...😀

[diamags in reply to Rhwright12]

I do the same for the scans. It just makes it that little bit better not having to change into a hospital gown for the scans.

[AvidBooklover]

I loved your advice about this the other day...whatever it is, you already are living with it. I am going to adapt and think the scan is a way to figure out what to do with whatever it is!

[hdhonda]

Jpl,

The cancer marker blood tests don't bother me, because it is believed they don't work on me. I don't even keep up with them. But, the scans scare me. I get very grouchy about a week before one and stay that way until I get the results. I am kind of like Lynn - bring on the xanax. All I can say, it appears to be normal to stress about them, so you are definitely normal. Blessings Hannah

[mariootsi in reply to hdhonda]

I get grouchy too about 2 weeks before and am a nervous wreck waiting for results.

[Teddielottie]

I can relate to several of the ladies comments above ...I have, so far, been fortunate to be stable from my very first Ibrance ct scan for low volume bone mets over 2 years ago , so maybe been lulled into a false sense of security. However , I am a realist and I know from being on this site , that at some stage I will have to change treatments , and one day it might involve chemo , but I put it to the back of my mind and tell myself its not happening yet and could be a long time away . So worry about it when the time comes ! There could be new treatments by then too !

I am having 6 monthly plus scans ...this I think helps me too ...I don’t seem to dwell on my next scan . And here in the U.K. NHS , (which country are you in?) it is normal to have to wait 2 weeks from ct scan to results , so I have accepted that , and I cope ok with it .Keeping my mind occupied (distracted!), keeping busy and gettting outdoors/exercise probably helps me too . My e-bike has been a godsend during lockdown !

My main anxiety comes on the actual results day , when sat in the hospital reception , and I usually have to gulp down a bottle of water and I feel jittery ...I just want to get it over and done with and get out and back home to my place of safety ! This forum has been a great help too ! x

[Jpl5036608 in reply to Teddielottie]

I am in the USA. So happy to hear you are stable! Wonderful! Thank you for your input!

[Teddielottie in reply to Jpl5036608]

Which treatment are you on and how long have you been on it ? Take care ! x

[PJBinMI]

I'm fortunate to have very good inner resources and got over scanxiety after a couple of years. I'm at year 16 with mets now so maybe having done so well is part of the reason I've gotten past that. One thing that I do that might resonate for others is when I have scans/blood work whatever, I make a point of hoping that the tests will show anything we need to know. It also helps to trust my onc. When I have had progression, it has not surprised me when the tests show that. My body has "known" that the cancer has grown, with symptoms.

[mariootsi in reply to PJBinMI]

16 years is just amazing!

[diamags]

Dear JPL, scanxiety never goes away. However, don't beat yourself up over it, just let it go. Remember that there is extremely good reason to have it and you wouldn't be "normal" if you didn't. With that said, the next step is what to do with it and that's the hard one. I've been blessed with some years of no progression. As PJBinMI pointed out, that helps. A lot. But as so many others have pointed out, if you have trust in your onc, no matter what, s/he is going to help you to go to the next step when it's time. It doesn't make it easier, but the hardest thing I had to concede to this disease is that it's going to do what it's going to do and I can't control it. That and Coca Cola. Coke helps.

[mariootsi]

I don't deal with scanxiety well at all. I have tried so many things! It's the element of the unknown that kills me! I do alot of praying and I trust my onc!

[Totheriver]

I have it right now. Heading out for my ct scan today and bone scan tomorrow. I am really nervous.....

[Jpl5036608 in reply to Totheriver]

Best of luck and lots of prayers! Keep us posted!