Scan question

[LovesLife]

I have yearly scans (CXR at 6 months) and my next appointment for CT scan is already scheduled for May 26th. However, this time the radiologist (not my thoracic surgeon) has requested a scan with contrast. I haven't had this test done since prior to my diagnosis. All my previous scans have been fine. I contacted my surgeon's office and the receptionist stated that it was the radiologist that made this determination as they simply requested a regular scan.

After repeated calls to the radiology department to find out why (I was told the radiologist wouldn't tell me why - only the doctor!) I told her to tell the radiologist that I refused to get the contrast unless he could explain why. Do you think I am being ornery? Having worked in the medical field for many years, perhaps I am a little more tainted than others and don't just follow along and do what I am told. I am just nervous about putting stuff in my body when it isn't necessary.

Anyhow, give me the truth folks - if you think I am behaving badly I will listen and back off.

Thanks,

Linda

[Bud Baker]

Linda,

I've always had contrast with my scans. I have no idea why they didn't use it on you before or why they would now, but I don't think there's ever anything wrong with demanding an explanation on why they want to do a procedure on you. It's your body.

[jstdzy]

Linda,

Ditto! I always get contrast. But I would be just as onery too, if they changed everything all the sudden!

Dana

[recce101]

Every one of my scans has been with contrast. They always ask about allergies first, so I guess some people don't get contrast because of that. Otherwise, it seems to be standard. They usually run me through the donut twice, then inject the contrast, then do a third run.

Ned

[Muriel]

I was told that they get a much clearer picture with contrast. I'm surprised that you've never had it before.

Muriel

[beatlemike]

My last two yearly scans were without contrast. Even if they did detect something early on I dont think surgery would be an option for me. Where if they caught a small spot on one of yours they may be able to cut it out before it would progress. I heard contrast helps pick up early spots better. You might ask I did notice a price differance between with and without.

[jaminkw]

I got in a spitting match with the first tech who was giving me a CT with contrast. I have a shellfish allergy and had been told at another facility that I should not have contrast. I had also had it without contrast at this facility. But this tech was insistent saying that how the orders read. She also said the way they do it now, shellfish allergy was not really a problem. But ornery? I did finally let her do it. When she was in process, she asked if I was o.k., I wasn't having any breathing problems? I told her no, but she was very lucky I wasn't.

I don't fight it anymore because my daughter, the RN, said take a benedryl if I was worried because contrast does give a much better picture. But still, I don't think they should throw us curve balls. It's all stressful enough without worrying, why are they choosing to do it this way now????

Judy in Key West

[LovesLife]

Thank you SO-O-O much to everyone who replied. Much to my delight I received a phone call after I got home from work tonight from the hospital. The girl I had been dealing with told me that she went to the radiologist and explained my concern as to why was it being done with contrast this time around - she told him that I was now worried that he had seen something untoward that was missed by the previous radiologists. She told me that he immediately asked for my file and all ct scans and read them then and there. He told her that I was absolutely right and that there was no indication that I would need a contrast CT.

I apologized to her again for being so persistent and she very kindly told me that she appreciates a patient who stands up for themselves - as you guys said - it is my body! She agreed that there is absolutely nothing wrong with getting more aggressive testing IF it is needed. Luckily in this case it wasn't. Perhaps this doctor always orders them with contrast (I have not had this radiologist before even though I am going to the same facility), but I feel better that he has actually looked at my previous scans and is agreement that I can continue as is.

So, 4 months until I can really start my scanxiety stressing. I'll be looking forward to you all propping me up and getting me through at that time once again (does it ever get easier?!) Thank you all for making me feel better (I really wasn't sure anymore if I was being ornery for no reason )

Again thanks guys - you're all the best!!!

Hugs,

Linda

[Melanie86]

Haha, Linda, You sound exactly like my Aunt Martha... and she's AWESOME!!!! Never follow blindly unless you are at peace doing so. You have a gut instinct for a reason. I'm glad you're using it!

Who cares what people think!!! It's their job to look after you, not just body, but giving you peace of mind and doing what's in YOUR best interest.

Don't lose that attitude! You can be persistant and kind at the same time!

Sincerely, Melanie

[Melanie86]

Linda,

Haha, sorry, I got carried away. I read your first post and had to quickly reply. I just read your latest post, and I'm SO glad that it was all sorted out for you!!!

My Aunt Mary has a phrase, "it's the squeaky wheel that gets the oil" or something like that haha.

Anyways, good job!!

Sincerely, Melanie

[LovesLife]

Melanie - you are such a hoot! I'm sure I would love your Aunt Martha. You, at such a tender age, have such wisdom inside you. I certainly wasn't anywhere near as mature at your age ... your family must be so proud of you. I am trying to teach my two teens to stand up for themselves, yet to always do it with dignity (even though sometimes I really, really want to yell my head off - especially when I think someone is not listening to me!). I only hope they have it as together as you do.

No word yet on the surgery I take it? Ahh, the waiting, it just sucks - no doubt about it. Where do you live in Canada (if you don't mind me being nosy - is your Aunt Martha a tad nosy too?)

Anyhow, I always love reading your posts and always look forward to hearing from you. You didn't get carried away - your enthusiasm is contagious and just makes me smile!

Luv,

Linda

[Melanie86]

Linda,

Thanks for the compliment!!! And yes, my Aunt Martha does like to be kept up to date on most things haha, I just see that as her wanting to be an active part of my life, which is always a nice compliment!!

I live in Ontario, Canada! It's a great place!

Actually, yesterday afternoon my surgeon called me!! Not her secretary, but she called me herself!! Isn't that so nice?! She said she's been thinking a lot about me lately, said that she'd like to take a look at my windpipes herself before the surgery, just to get a better idea of the location of the tumour. She said my surgery will be early to mid. february at the LATEST! So I'm very excited about that!

She said her secretary will call me shortly with the dates.

I'll let you know when I get them!!

Love, Melanie

[LovesLife]

Melanie - believe it or not I grew up in Thunder Bay Ontario - we moved to Edmonton, Alberta when I was 10; however, I still have many relatives there. I know Ontario is a huge province, but it still seems like a small world sometimes. I haven't been throughout all of Ontario, but the places I have lived and seen are beautiful. Much nicer lakes than Alberta, that's for sure! In 2005 we rented a house on Lake Superior (my parents, sister and her family and my family) and what a blast we had.

Isn't that nice of your surgeon - see, it's that personality of yours that draws people to you. She sounds very caring - a nice trait (and sometimes a rare one) in a surgeon.

I'll keep everything crossed that the surgery is earlier February rather than later February! It might be difficult to walk that way but it will be worth it if it works - sure hope that secretary calls soon though-ha ha!

Luv,

Linda

[Melanie86]

Hi Linda!!

The secretary just called!!! LOL!!! Not about the surgery, but about the bronchoscopy... Feb.11 at 7:30am... she said she'll move it closer if she has an openning, but for now, that's all she's got.

Still, dates are nice!!! hahahaha

Love, Melanie

[Debi]

Linda -

Sorry, just read this post and I know its resolved but I had to say I'm proud of you - question question question!!!!!!!!

Just to add--- I always get my CTs without contrast as I had an allergic reaction to the dye years ago and although I eat shellfish now, I don't want it intraveneously pumped into my body. However, I can't tell you how many times a Tech got annoyed with me because I told them no contrast. A few of them have told me "well, we're at a hospital in case you have a reaction, we'll have help".

I have asked several doctors and radiologists if I am hurting myself by not having the contrast and have been told that I'm not. Although the dye makes the CT clearer, the Radiologist can see the same thing without the dye- he just has to spend a little more time examining the scan. I'm not sure but I think what the Radiologist charges more than covers the few more minutes he spends scanning my scan.

Good to hear it all worked out for you!! Keep asking those questions g/f!

[LovesLife]

Debi - thanks for giving me the peace of mind that I am not hurting myself by NOT getting the dye. You're right - it's not our job to make their job easier and if it takes a few more minutes to read the scan then so be it.

I don't think they are used to being questioned and I told my sister I may have quite the wait come scan day if they have a good memory and remember this ! I don't much care though - I 'll just bring a good book and smile knowing that I got my own way!

Take care my friend,

Linda

[jstdzy]

Linda,

Now here is the problem with all this . . . WHY HAVE I BEEN GETTING CONTRAST THIS WHOLE TIME?!?!?!? I hate needles and I really hate I.V.'s! That is the major problem with my scanxiety. GRRRRR!! They are setting themselves up for one rude awakening! My ONC wants ANOTHER MRI in April . . . well forget it! They also want a CAT with contrast in April well guess what?!? They can forget that too!

Dana

[LovesLife]

Hi Dana - no, please don't get me wrong. The whole thing with my questioning the contrast CT scan was simply because I had not been getting the contrast CT in the follow ups since surgery. I had the CT with contrast prior to surgery (which is when they diagnosed possible carcinoma); but since surgery have only had non-contrast CT's. I questioned the whole issue because it changed. Had I been having them all along I am certain I wouldn't have thought twice about it. As well, it was the radiologist who made the changes - not my surgeon. That was another red flag for me. If my surgeon had made the change he would have explained why and I'm pretty certain I would have been just fine with it because I trust him.

So, I am not against whatever tests are needed - I just knew that for me it changed this time around and I wanted (and demanded) to know why.

If you read all the answers from the other members Dana - almost ALL of them get CT with contrast. So please, please don't NOT get the testing because of my issue. Have a talk with your doc and ask him why you get the contrast - he should be able to explain this to your satisfaction. Keep in touch and let me know how it goes.

Hugs,

Linda

[Patti B]

Linda-

Good for you for demanding answers to your questions. Its your body and you are allowed to ask ANYTHING (at least in my opinion but then remember I was the one who got fired by my last onc for asking too much).

Anyway, I have always had the contrast, too. The doc has to mark on the request with or without contrast - wonder if your doc just doesn't know what box to check - LOL!!!!

Glad you won that one!!!

Hugs - Patti B.

[LovesLife]

Patti - so great to hear from you!

Perhaps you're right and he simply checked the incorrect box - sounds like an easy mistake to make.

I am with you on the opinion it is our right to ask questions (and not get fired for it mind you ) - I wonder how your onc would have felt if that was a loved family member and the treating doctor got upset when he/she asked questions - jeez! I think you are way better off anyhow - I know I couldn't have any kind of trust in someone with those kind of control issues (I need some control myself-little bit of a freak that way )

Take care Patti,

Hugs,

Linda

[Patti B]

Linda-

I couldn't stand that onc. When he told me that he was "terminating our doctor-patient relationship" If not for the IV in my arm I would have done cartwheels across the chemo room!!! Abd I did tell him once when he was acting like God - "I can't go home at 5 pm and turn the light off - I live with this 24/7".

We have to be our own best advocates or have someone who will be - should be our docs but it doesn't work out that way!!!!

Good luck with your scan!!!

Hugs - Patti B.

[jstdzy]

Contrast update:

Dr. Weiss and Dr. West are neither one that attached to using contrast. They both agree it is helpful for seeing smaller lesions in the lung and the liver, but not that necessary.

So I will talk to my ONC about ditching the contrast on my CAT's, since I have such an I.V. phobia.

Dana

[LovesLife]

Dana - thanks for getting a further update on this issue. I am so happy to hear that we are headed in the right direction! I haven't been on GRACE in over a week so I will check out your posting. Thanks so much again.

Linda