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Has anyone asked for a change in scans?

Hi! Am I the only one that gets sick on scan contrast? I had a long conversation with the Onc nurse this morning...she says CT is the only scan for MBC...no one gets a PET scan...the lack of empathy just got me mad! I tired of getting sick...my s anxiety isn’t the results it’s getting sick on the contrast...been doing this for 3 years...and basically get u should be happy to be alive type of answers! 😡

Anyways needed to vent! 😀

I’m only 48 so I’m looking at potentially another 10 or so of these scans that make me sick! 🤦‍♀️

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Hi there

I’ve never heard of anyone feeling sick with scans

Do you have water before scan or that disgusting thick white drink?.. I had that on two occasions and I felt queasy due to that...not from the contrast that is injected into the vein

I wasn’t sure what you said made you feel sick

Barb xx

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Yep the drink! I got them to do Iodine drink the last 2 times...and to let them let me use the bathroom before hand...It actually says in my scans “extensive loose stool in colon” and I’m like see that’s how my stomach feels! 😂😱🙈😂

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Is it the contrast they inject or the stuff you drink to prepare? The prep stuff makes me violently ill so they switched me to EZCat and now I don’t get sick

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Of course they do pet scans. But I’ve only had 1. The initial scan. Now I get CT’s and thank goodness do ok. Maybe talk to the doctor.

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I know! I think sometimes they forget that there’s internet nowadays!

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And whatever the case, they should NOT make you feel any worse about being there than you already do. That really makes me p'd off.

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Pet Scans are also more expensive than CT Scans.

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Yes, and they usually don't do them routinely. In 5 years I've had one.

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Hi Heather. How do you feel sick with the contrast? Are you talking the oral or the IV contrast? If it's the oral one I would ask them to do without. I never get that because as long as they have one on file it isn't required for chest, abdomen and pelvis pictures. If it's the IV contrast the only real thing that could be an issue is that it is iodine based. Sorry you get so anxious about this. Depending on how you feel sick there has to be something they can do to prevent it. Personally my oncologist feels the CT gives a better picture of mets than a PET.

Sandra

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That’s what they tell me at the scan center...which I think makes the cancer center 😡 mad because they don’t like to be wrong! (But they are 😂)

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Yes, some people feel sick from the CT IV contrast dye. It has to do with fluid exchange in your body.

If it’s the Oral, ask to skip it (it’s rarely used by ED doctors)

If it’s the IV contrast, ask if you can be hydrated/ drink water.

Ask them to have a ginger ale ready post scan.

I happen to be one of these people who feels ill too.

Good luck

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I feel so badly for you. It's bad enough to have to go for this test without feeling sick.

I would ask not to have to drink that junk or maybe try the plain clear kind. I never get flavoring cuz that would turn my stomach.

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Hi,

I have MBC to bones and lymph nodes.

I get a PET every 5-6 months, it shows how active the cancer cells are. I do get a CT once in awhile to see the size of the spots on the bones. I was told to try to drink the oral contrast for the CT, but only as much as I can. It always upsets my stomach. I am talking about the clear oral contrast, the radiologist said that it helps with the pictures of organs but that I could skip it if I want. I try to drink about 1/5 of it.

I was given the milky contrast only once, and my stomach was upset for days.

Lisa

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You are not alone. I have MBC and get CT every 2 months at this point while undergoing chemo treatment. I get dizzy, nauseous, and vomit from the clear and chalky barium drinks given before CT scan. I am okay with the injection. If your having difficulty with the drink like me there are a couple things to do that helped me. First you can refuse it and only do the injectable contrast. This is your right as a patient. But you must do the injectable. I was told by my oncologist and radiology techs that the radiologist can read them almost as well as with the oral or drink contrast. Out of 11 scant this year I refused 9. I drank it on the first one and got sick. I spoke to and learned from my oncologist that it was okay to not drink it and in fact he ordered no oral contrast with the other 9 scans. We were successful at reading and seeing the good changes going on. Then because I was coming up to my 10th and possible final chemo round he ordered the oral contrast. So I asked the radiology techs for advise. One you might want to drink a bit of protein drink since it is fluid and it might help since you cannot eat. Two ask for the clear drink and bring raspberry crystal light. This hides the gross flavor. Three drink it as slow as you can Over the hour. It is not necessary to drink it all. Just drink as much as you can the more of course the better. This really helped me out a great deal. I did not do the protein drink, I forgot. But the clear drink with the raspberry crystal light and slow drink worked out. The choice is yours. I hope something helps.

I would contact your insurance provider and ask if the doctor orders a Pet/CT if it is covered for restating of your breast cancer. I was getting them for a while. I have had MBC de novo or at original diagnosis in 2007. I am not sure if you are being told the right thing. It’s best to directly talk to your insurance.

I wish you the best of luck.

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Oops when talking to the insurance ask for re staging of breast cancer. Sorry auto correct. I remember this was how my Pet/CT’s were ordered.

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Where are u at? I was told that if the doctor orders it that way u have to take it...but another nurse did mention u have rights....and then another said that they can tell if u didn’t drink enough and they’ve stopped scans and sent people out of the room to drink more...(did I mention I live near Youngstown and the mob mantality still rules 😂😱🤣)

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As a tech, the only time a scan would be stopped until the Oral contrast has reached entire colon is for Appendix Protocol. Looking for appendicitis. Tell the tech you did the best you could (or vomited) but first ask the doctor to order the scan IV contrast only.

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Hi Rhwright...first, I have to admit that I scanned, didn't fully read, the other replies. So forgive any repeat. But I am ALLERGIC to the contrast, and this is not uncommon. So they treat it as such, gosh, I wish I knew the specifics, but they swap something out and/or I do benadryl pre-treatment, with everyone on guard. If it is an allergy, please take it seriously, long before I got cancer I had many serious, i.e. close to death, episodes with anaphylactic (sp?) allergies, e.g. foods, drugs, etc.

Before they changed my contrast dye protocol, i.e. the episodes that led us all to conclude that I was allergic, what would happen was I would feel flushed, hot, generally ill, and had to rush to the restroom re: really urgent diarrhea. and then for several/many hours afterwards I had hives on my face. It was my selfies of my hives that told the docs that this was an allergy.

Please do take this seriously, if you think it might be an allergy. Gosh, we are fighting every day to live, going up against one foe, it'd be awful to be ambushed by another!

Take care,

Lynn

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It’s the prep drink that I have problems with...upsets my stomach (diarrhea)...I feel warm but they say no fever...last time went to Panera’s afterwards. Had a salad because of my issues and still ended up in the bathroom halfway through the meal...😱

Just frustrated with the lack of ability to work with me on this situation!...

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Ask for EZCat. It doesn’t make me sick but the regular one did.

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If you are allergic to the iodinated CT IV Contrast, perhaps it would be better to have a PET Scan, which uses a different IV Contrast ?

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I had anaphylaxis the first time I had CT dye...I don't remember much about it but it was quite an event I guess. Freaked my husband out of course. My oncologist prepared me with the next scan by pre-medicating me with 150 mg Prednisone and 150 mg Benadryl. Of course there is no way I would react with that amount of steroids on board but I felt awful later than evening from the steroids....gittery, restless and heart palpitations. I told her I wouldn't take that dose again so we developed a plan to reduce dosage of each with every scan(she wasn't totally sold on the idea but knew I would do it anyway so worked with me) and get myself desensitized until I didn't require anything. She was present along with the code team for the first 2 downsizing and all went well. I now can do it without anything so I am pleased. As she always tells me I'm stubborn for sure but usually right in my choices.

Sandra

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So true. I am allergic to contrast dye too.I broke out in hives all over my body. Since the pet scan was not an option we tried the MIR with contrast dye. Since the dyes are different . After the 3rd MRI I developed a resistance to the dye and started with hot flushes and hives. next MRI they gave me predizone and Benadryl . I still had a

Reaction . I now wear a medical alert bracelet. My onocoligist orders pet scans ever 4 to 5 months so she can watch the progression. Take care shelley

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It’s actually the oral contrast that bothers me...but I’ve beat my head against the wall enough times with this and other issues...enough is enough I need a new team 😀💕 Any suggestions? I’m in Ohio...

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I don't understand why they told you no one gets PET scans, those are the only scans I get. A total of 5 in 1 yr, next one plan for june.

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I get only PET scans. My cancer is so diffuse that it doesn’t show on a CT scan.

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My first scan was a combo Pet/Cat scan to have a baseline. Six months later a Cat scan and I’m due for another (6months) Cat scan in two weeks 😬. Maybe because I’m in Medicare they only approve certain tests? Not sure why but feel I’m getting good care.

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I am sorry I hadn’t responded sooner. There are several patients rights spelled out by our government. There are also state written patient bill of rights. I do not believe any patient rights would state you could not refuse medicine for testing and or treatment.

I am in Southern California.

I was able to talk to my radiology tech and others in radiology that take care of me during my CT and most importantly my oncologist regarding not wanting to take the oral contrast because of the effects it had on me.

I learned that when orders are written they are written with contrast as every CT must have one contrast. In general if you are not allergic to the iodine they will do the injection not the oral so long as you either refuse oral contrast or as my doctor did write IV contrast only on the orders for abdomen and pelvic CT.

The oral contrast is provided to see better your internal organs of your digestive system. The injection will light up other tissues in your body. If you need a clearer picture of the digestive organs it’s highly recommended to do the oral contrast. In my case the radiologist and my oncologist were in agreement that the scans could be read accurately without the oral contrast. I believe it was because of the machines scan quality. It was a newer machine. On the last scan we all were in agreement that drinking the contrast would be a benefit. To have the best quality picture to quantify better the tumors I have.

The least I drank was about 20 ounces of the 36 they offer. This was on my last scan. At the hospital where I go I get 1 hr to drink before the scan. Of course it could be longer if I get bumped. One time i was bumped and didn’t have my scan for 3 hrs after my drink. The pictures on the scan were not effected. I am not sure but there might be other reasons that a patient might have to drink more. One possibility is their metabolism and not having or having to much time before scan after last drink. Another is it might be a different type of order where they are looking at a specific organ that needs high contrast. It’s a good question to ask your care team especially in radiology as to why they will not allow you to refuse the drink and only have IV contrast and why you might need to stop imaging to drink more for the kind of CT your doctor ordered specifically.

It is truly is best to talk with your health care team. To be comfortable with testing procedures, medicine and what the outcomes you are expecting from testing. If you feel pushed around stand up and advocate for yourself. You are to important to be doing things you don’t want and or understand. After all as part of your patient rights you have the right to informed consent. You must be informed in your language and in terms you understand that helps you make a decision regarding your healthcare.

I hope that wasn’t to much but, I thought it important.

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Thanks for your response! My mets are in my bones...and I had a local reoccurrence on the right side...I wonder if he thinks one of them will light up from the contrast? 🤷‍♀️Haha!

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They give me something like water mixed with Crystal Light. Tastes okay, but gives me the runs. Last time, I had to wait until I was sure I could stay in the machine for 10 minutes without having to run to the loo. Doesn't make me feel bad - just the runs.

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That’s me! 😂

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There are two brands of stuff to drink before your scan. The regular one makes me vomit and feel awful. They give me the second brand now, I believe it’s called EzScan. It doesn’t make me ill at all. Ask your radiology department.

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Hi

I do, I can only take the pet scan contrast. I believe it’s glucose. The one for bone scan make my BP drop real low and I have weird neurological symptoms. They do a pet/ct scan with the glucose and I’m good.

Robin xo

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I myself get sick from the white drink. I refuse to take it and the doctor doing the scan said that is fine. They do Ct scan and follow up with the pet scan. It is on my chart now does not need to drink. But I am ok with the injection.I have Ct scan and pet scan every three months.

Barbara

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Does your doctor have to preapprove u not drinking? It’s just so upsetting not being respected as a person!

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Always remember that you are always in control of your body. Tell your oncologist to mark ' no oral contrast ' on all future requisitions. They can do this for you. Mine did and it is never an issue. Good luck.

Sandra

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I asked my onc if I had to have ct scans to take ibrance and he said no. I told him I prefer bone scans and chest xrays, he said ok. He's very agreeable and I like that. It's my life and at stage 4, I WANT TO MAKE THE CHOICES, and I don't think that is rude at all. Granted, it could be to my detriment, but the key word is MY! peace! <3

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