Anxious & scared

[Pekingese]

Hi all CLL folk , I had my yearly ultra scan 2 weeks ago. And they want me to have a CCT Scan for my kidneys. I will have the dye injected and also have to drink the dye. I’m still on watch and wait 4 years now . Has any of my fellow CLL golf had this done . Thank you 🙏

[MistyMountainHop]

I do understand your anxiety, but on the upside, you are getting tests done, and that is very positive.

I hope all goes well🤞

[Pekingese in reply to MistyMountainHop]

Thank you 🙏

[Horatio2]

I am so sorry you are having to go through this, and I can only imagine how anxious and scared you must be. Though I know it is easier said than done, try to remember you don’t yet know anything for certain. I’m sending good vibes and positive thoughts your way. Keep us updated!!

[Pekingese in reply to Horatio2]

Thank you I’m trying my stomach is in knots. It’s a week on Friday. 🙏 Ros

[scryer99]

I've had similar tests 5 times in two years -- kidneys were not specifically mentioned in my case but they've done neck-to-pelvis so covered that ground.

The injection is not bad, just feels a little weird when the dye hits but not painful other than the usual needle. The barium drink is fine, I got a berry flavor since I hate bananas. The CT is not a bad experience, just a little loud, but not claustrophobic like MRI can be.

Don't fret about the CT risk. Yes, it's better to not have one than to have one, but these things are relative. You'll take more risk driving to your appointment.

Good luck on the results. Radiologists, at least in my system, tend to be conservative interpreters, so go over results with your doctor, don't just read them.

[Pekingese in reply to scryer99]

thank you it’s the canular that I’m Scared of 😢 it’s just the unknown and the waiting for CC T scan. I wish I didn’t worry so much. Ros

[Gradyboy in reply to Pekingese]

I have one next week. I am having it to check progress of treatment. I feel like it's overkill since I am doing fine on treatment and numbers are good. I totally understand your anxiety mine is through the roof. I keep worrying they will find something else wrong with me. I know if everything comes back good I will be happy though. Good luck to you.

[Pekingese in reply to Gradyboy]

I’m the same always thinking the worst. Good luck with your results 🙏🙏 Ros

[Pekingese]

No I’ve never had it before, They didn’t say what they were checking for . I have heard some have a reaction. The letter just said Renal 😏 Ros

[rcusher]

I just had a CT scan and a PET scan both on the same day last week, both with contrast. Had to have drinks both times and injections. I had no problems at all.

I find the hardest part of the whole thing is waiting for my results.

Good luck,

Jack

[Pekingese in reply to rcusher]

It’s the waiting and wondering what the outcome may be, I hope it’s ok for you . 🙏🙏 Ros

[rcusher]

I had both these scans done and lots of bloodwork because I have been on a clinical trial since Jan. of this year. Last bloodwork was extremely out of normal and my doctor was afraid that I might have Richters transformation. All the test came back confirming I did NOT have Richters and my bloodwork went back to MY normal and we are proceeding with the trial. The doctor figures I must have been fighting some kind of infection which seems to have cleared up.

Scary few days.

Jack

[Pekingese in reply to rcusher]

That’s great to hear, you must of been so worried, mine is for my kidneys, they haven’t said what they are looking for, I’m just hoping it’s not to serious. Best wishes Ros .

[SofiaDeo]

Please remember many times these tests are done to make sure you *don't* have something going on, not because they think you *do*.

A few years ago I had a severe cough, where I could taste blood, but my lungs were clear. CT scan showed granular opacities. I had a Covid test, it was negative. They checked again in a month, to make sure things weren't changing like a malignancy would. They didn't change like a malignancy would. Next was the "rule out another infection" with a Pulmonologist. He watched me a few months, things slowly cleared up. It was finally decided I had an irritation to a number of things/chemicals in the air: wildfire smoke, construction dust, sewer gas from a leaky toilet seal, leaking AC in a car. So I started monitoring air pollution and avoiding being outside at the worst times, got the toilet and AC fixed, and got someone else to clean up the construction dust.

But *if* I had Covid, or a second malignancy, or an infection, they would have caught it earlier. I had clear lungs, but a few symptoms that made them want to double check everything.

You are having some tests likely to verify there isn't the beginning of a problem, not because they think you have something awful. Please try to think of tests/scans this way. I do think if a doc suspects something serious is going on, they mention it.

[rcusher in reply to SofiaDeo]

My doctor used the the term " Out of the abundance of caution ".

[Pekingese in reply to SofiaDeo]

Thank you Sofia, beautiful name my new Granddaughter has the same name. 3 years ago when I had my first ultrasound I had a small heptatic cyst and an aniomypolipoma so I’m not sure from my last Ultrasound if they have grown ? Or something else on my kidney. My bloods are all ok apart from my HG which is 113 . It’s just the unknown. Best wishes Ros

[SofiaDeo in reply to Pekingese]

I had a hepatic cyst during my initial workup the docs wanted to investigate further. Since I was dealing with a potential acute leukemia diagnosis at the time, it wasn't high on my priority list, and I never followed up. A decade later, it's still there, doing nothing as far as I can tell. When a second group of docs noticed it on a scan they did, they also got concerned until I got them the data showing it was there for years and years, it wasn't anything new. IDK how any of your labs related to kidney function are trending, or if you have any other diseases like diabetes where kidney function can cause problems. But just because we have a few abnormalities that happened to get caught on a scan, doesn't mean something awful is going on. If anything from earlier tests showed something was near a kidney, this may just be verification the kidney is not being affected.

[Pekingese in reply to SofiaDeo]

Oh I do hope so Sofia, I’m the words worst worrier. My family keep saying stop worrying easier said than done, night time is the worse my mind races 🙄 I’m awake 5 o’clock in the morning. I try to keep myself busy during the day.

[tonyfrench]

I've had Multiple CT's over the past 35 years for my Kidneys(I'm a Stone Factory), ask the Radiologist if the Contrast is Ionic or not, also, when they're done with the Scans, make sure you DRINK a Gallon of Water to flush the Barium out of your system, if not, you'll get Very Constipated(I've got the T-shirts too)

[Pekingese in reply to tonyfrench]

thank you Tony I’ll ask the question, what is Lonic ?

[SofiaDeo in reply to Pekingese]

"ionic" contrast media, not Lonic. "ionic" ones tend to have more adverse reactions, and in the non ionic ones, as the concentration of iodine increase, so does the risk of adverse reactions. Ideally it's good to double-check that the lowest strength, non-ionic contrast media is being used for whatever one is scanning. With healthcare being so stressed nowadays, and even computers not 100% reliable, it's good for us patients to verify what's being used, as a double check. Even a 99.99% score means there is an error somewhere. If we advocate for ourselves, and double check what we can, we can avoid being in that error. We act as another safety "layer of cheese".

ncbi.nlm.nih.gov/pmc/articl...

[Pekingese in reply to SofiaDeo]

thank you Sofia I will double check . ☺️

[Pekingese]

hello again, I’ve just received a letter from the hospital, my ct scan is for a fatty Lump on my right Kidney . Ros

[skipro]

hi

I had CT neck chest abd and pelvis with IV and oral contrast a few days after my CLL Dx. I was told it was a standard part of the work up

God bless

[Toothdoctor in reply to skipro]

skipro I’m a little confused about your scan. Did you take both IV contrast and oral contrast agents?

Was it a PET/CT? Or just a CT? I ask because I had the PET/CT but only IV contrast

Best always

[skipro in reply to Toothdoctor]

hi

They were regular CT scans. And they were with both iv and oral contrast

Are you a dentist?

I’m on V + O after failed FCR and have some big problems with my teeth and have a lot to sort out on things like partial denture v implants and bridges as it pertains to infection risks and odds for success

Thx