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Scanxiety

Flufff's picture
Flufff
Posts: 57
Joined: Apr 2019

How do you deal with that? 

I’m having my CT scan this Tuesday and I’m already now so nervous. 

Does it ever get any easier??

MAbound
Posts: 1063
Joined: Jun 2016

You'd think that when you are finished with treatment that life would return to normal and be easier, but it doesn't always seem that way.

Scanxiety is just one of those things that is part of the new normal we all have to cope with. The trick is to live the heck out of your life between scans and follow-up appointments because what else can you do? It takes a long time of NED to start trusting that maybe you are going to be ok, but there will always be some degree of anxiety as tests and check-ups loom large because you've lost that innocent belief that cancer happens to other people and not to you.

oldbeauty
Posts: 251
Joined: May 2012

It is different for us women who have recurred.  Then, you are told that you are treatable but not curable.  So scanxiety hits overdrive.  I've had this disease going on 15 years in August.  I've lost count of the imaging I've had in those 15. years  To me, looming scans have been like waiting for the governor to grant you a reprieve when you are on death row.  The most recent was 10 days ago, and I actually was noticeably more under control.  I got snippy and snappy a few times but I've been to therapists and am surrounded by very supportive and empathetic folks, and I hope I have finally reached a place where I can be more serene and allow myself to have faith that science will keep me alive for awhile.  My single pulmonary nodule is still growing but not big enough yet to biopsy.  At the rate it's going maybe I can get a biopsy in December.  I really feel like I'm embarking on a 6 month vacation (rather "staycation"); I'm happy and engaged in home improvement and gardening projects.  There's no one I'd rather be homebound with than my darling hubby.  I miss traveling but I'm not going to be a Covid volunteer to get sick to promote herd immunity, thank you.  I'm surprised by my attitude.  I believe that I can be treated when the time comes and I'll reclaim NED status for the 4th time.  So, I agree with MABound.  Living well and allowing yourself to be entertained are good coping mechanisms.  Easier said than done but well worth the effort.  Fluff, best wishes for the wait until your scan, and all of us here, I have no doubt, are sending out positive vibes for a good result.  Best wishes, Oldbeauty

 

 

ETA 15 years, not 20 (which I fully intend to ring in also!)

Fridays Child
Posts: 179
Joined: Jul 2019

Thank you, oldbeauty.  It is encouraging to hear that you're almost 20 years out.  The "treatable but not curable" concept can be tough to absorb, but we have no choice and continue hoping for the best possible outcome.

CheeseQueen57's picture
CheeseQueen57
Posts: 927
Joined: Feb 2016

Well said MABound. 

ChessieMae's picture
ChessieMae
Posts: 5
Joined: Feb 2020

MAbound that was the best thing I have read today, or ever on being a cancer survivor .....thanks

janaes
Posts: 800
Joined: May 2016

I just had a scan this last week. Its been 3 and a half years and although th accual scan was ok, I am now a bit nervous for the results. I think your right also MA bound that anxiety is just part of having cancer. Sad but true.

 

teranarmstrong's picture
teranarmstrong
Posts: 11
Joined: Apr 2020

I'm stage IV still in chemo and suffering scananxiety. I read Psalms, do Bible study, and meditation found on YouTube. I also take Xanax. The fear of unknown is my demon so I focus on faith. It's hard but helps center my heart

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2772
Joined: Mar 2013

It is very real!  Heck, I can still get my blood pressure rising when I visit the gyn onc's office for an annual visit!  

I admit when a "Calm" app commercial comes on, be it 15 or 30 seconds, of the rain falling on the leaves I can stop what I am doing, focus on listening on that and can adjust my inner being.  I think it is wonderful.    

It is really good to hear from you ladies.  

Donna Faye's picture
Donna Faye
Posts: 413
Joined: Jan 2017

I think of scans as my friend as I would not be here today if not for them. That appears to be the only way one can find out what is going on with me. I have one due in June and actually look forward to getting it and the result. That way the doc and I stay ahead of the game.

teranarmstrong's picture
teranarmstrong
Posts: 11
Joined: Apr 2020

What a wonderful way of looking at scans! Information is just that: information. It's what we do with it that matters and we always have a vote! Bravo for your positive attitude!

 

oldbeauty
Posts: 251
Joined: May 2012

Seriously, I have strived to adopt your attitude.  Like they say...fake it till you make it!  Best wishes, Oldbeauty

CheeseQueen57's picture
CheeseQueen57
Posts: 927
Joined: Feb 2016

Despite my current situation, Megace bought me 3 years of NED which is almost unheard of. I wish you at least that and more b

Donna Faye's picture
Donna Faye
Posts: 413
Joined: Jan 2017

That is what I am hoping. Hoping the combo is working for you, too.

Flufff's picture
Flufff
Posts: 57
Joined: Apr 2019

THank’s a lot for all your replies. They really help me so thanks a lot  :)

 

Scan is done now. So now the waiting game begins. :(

 

jan9wils's picture
jan9wils
Posts: 117
Joined: Mar 2017

I'm on the every three month PET scan regimen since I keep recurring. I get anxious, still, although as Donna Faye said, I probably would not be here today if not for them. CA125 has never been an indicator for me. So it's the scans that help find the tumors.

Theskinnyscot's picture
Theskinnyscot
Posts: 25
Joined: Dec 2019

trying to enjoy my 60th birthday today but.. I have my first CT scan after treatment tomorrow. The part I am freeking out about is the contrast dye, at least for now, but if that goes well then I will freek out for the appt with my oncologist the next day. I have to premedicate with steroids and benydril as I have had a reaction to the dye before. I have zero confidence as they keep giving contradictory instructions. They want to do a chest ct and a pelvic/abdominal ct. When I asked about the timing of the doses of methylpredisone they couldn't give me a straight answer!! It says take first dose 12hrs before injection and second 2hrs prior with food. Then they said don't eat anything for at least 4hrs before drinking the dye but be sure to hydrate for at least 6hours prior. Still with me? I asked at what point/ time they would do kidney function test, the dye is harsh on kidneys especially if you have had kidney issues before. They said they would draw blood when I got there which is when they said I would start drinking the 32oz of the dye solution!? Because it must be drunk 1 hour before the CT for pelvis/abdomen. Injection of dye for chest CT? If you don't hear from me again it will be due to this.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1673
Joined: Jun 2015

Happy Birthday! So sorry you are having to deal with the anxiety. Scanxiety is hard enough but it sure sounds like you have extra issues to cause concern. Please come back and let us know you made it through safely. I'll be thinking of you and sending major cyber hugs your way.

Love and Hugs,

Cindi

Fridays Child
Posts: 179
Joined: Jul 2019

First of all, congratulations on your 60th birthday, and may you have many more.

As for the CT, yes, the premedicatioin is a pain.  I have to do that, too.  The stuff that I have to drink is one type of contrast, and then they do one scan without the IV contrast, then do the IV contrast and do another scan.  For me it's two separate types of contrast. 

I also had a reaction long ago so have to take the prednisone and benadryl.  The schedule they give me is:

13 hours prior to scan, first dose of prednisone

7 hours prior to scan, second dose of prednisone

1.5 hours prior to scan, drink first bottle of contrast (I reached the point I couldn't tolerate the barium so now I take one called Breeza.  Easier to drink, but still feel lousy for days after)

1 hour prior to scan, third dose of prednisone, plus the benadryl.

Half hour prior to scan, drink half of second bottle on the way, then finish after arrival when they tell me to drink it.

They do the blood test for kidney function when they put in he IV for the contrast.

As for eating, I think (can't find instructions) they say not to eat anything for 6 hours prior to the scan.  I can have clear liquids until time to start drinking the contrast, after which I can't drink anything but it. My prednisone instructions do not say to take it with food.

 

Your instructions are slightly different since it sounds like you only take two doses of prednisone.  I hope you can get some clarity before time to do anything!  I think my scanxiety has more to do with the pre-meds and the subsequent side effects from the whole procedure than it does worryhing about the results - although there is a bit of that as well!

Best of luck to you!  Hope to hear from you afterwards that everything was good.

 

 

Theskinnyscot's picture
Theskinnyscot
Posts: 25
Joined: Dec 2019

Thank you Friday's child, I think I read that methylpredisone is more potent than prednisone but don't quote me, I have been reading so much. I am so annoyed as this could be avoided if my doctor had just requested a pet scan instead, I know it is more radiation but I think I would take that trade off. I am ready to tell them to forget about it if they don't clarify things when I get there tomorrow. Thank you for letting me get this off my chest, I think it helps.  

CJM1948's picture
CJM1948
Posts: 4
Joined: Jun 2020

I have found Methylprednisone MUCH easier on my body than regular prednisone. Good luck to you!

Theskinnyscot's picture
Theskinnyscot
Posts: 25
Joined: Dec 2019

all done for 3mos. CT clear except for some spots on my spleen. He will check in three months with a pet scan. I had typed a long winded post but it kept coming up with error message. So I am going to see if this goes through

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1673
Joined: Jun 2015

Sounds like good news Miss Skinny! Now, how about celebrating your birthday again out from under the clouds?!

Love and Hugs,

Cindi

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