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How scary is the rai scan ?

MarinMark
Posts: 139
Joined: Aug 2011

I couldn't tolerate an mri scan because I have claustrophobia. How freaky is the rai scan ? Is it scary ?

sunnyaz
Posts: 582
Joined: Oct 2010

It's nothing like an MRI. It is just a box about three feet by three feet that comes down about five or six inches from your body and moves slowly from head to toe. It takes about twenty minutes. Then they do a shorter scan of just the head and neck (with your head tilted back slightly) that takes about ten minutes. It's not enclosed like an MRI. I told them about my claustrophobia and they put a blanket on my chest so that the scanner wouldn't come too close to my face. The first scan that was done at different hospital, they used a Kleenex box on my chest. The scanner senses how close it is to an object and won't go closer than a specified distance. They will let you bring an iPod to listen to music also. I took a Valium and brought my iPod and was very comfortable. I think I even drifted off for a while. Just calmly let them know that you are claustrophobic and they will stay close and help you. Nuclear Med tech's deal with people like us every day. They are prepared. It's sort of how I deal with people who are needle phobic. I just talk to them all the way through their blood draws or injections (distraction techniques) and then it's over before they have a chance to be afraid.
Blessings,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

Thank you so much !! Nice reply. So what is the scary part ? Drinking the rai liquid ? Is there an injection of anything ? How does the patient know the dose is correct ? Blind faith ?

It might be scheduled for three weeks from now and no one has told me about isolation, plastic mattress covers, laundry---- nothing.

Did you meet the nuclear docs days before your scan ?

amorriso
Posts: 186
Joined: Oct 2010

My RAI came in pill form. They may not fill you in the isolation etc until things are actually scheduled. By then you'll know what you need to do anyway from chatting with us here.

I met with my nuclear docs when my RAI was scheduled, and again before I got the actually dose. They were quite nice and open to answering questions.

Cheers

Andrea

MarinMark
Posts: 139
Joined: Aug 2011

I live alone, but no doc or nurse has told me anything about any things which should be done at home. Is there a list somewhere ?

teamwink
Posts: 97
Joined: May 2011

To address the first question, the scan is not scary - however, I did keep my eyes closed. It was actually a bit relaxing, but my folks told me not to open my eyes since the instrument was literally very close to my face. I listened and it was just peachy.

The RAI folks were incredibly awesome in helping me understand precautions - the only crappy part is that they don't meet with you until the day you take the pill (at least where I am). I actually looked them up and called them - they were super helpful. I wanted to plan in advance. I don't think that they get many calls on this, so they were glad to help. they were far more helpful than my doc was regarding anything related to RAI. There are all kinds of lists on the internet, but it may help to get the info from your specific docs at nuclear medicine.

You're going to do great - hang in there!

MarinMark
Posts: 139
Joined: Aug 2011

Good idea.

sunnyaz
Posts: 582
Joined: Oct 2010

I had a consultation before my RAI. You should be scheduled for a consultation. My dose was also in pill form (about 5 or 6 pills). They rarely give it liquid form unless specially needed for people who can't swallow pills. Mine were capsules about the size of a Tylenol.

If you are taking a treatment dose your scan will be seven days after you take it. I met with my Nuclear Medicine Doctor one week before my treatment dose, he gave me all the instruction and then I went back for my dose. Seven days later I went back for the scan.

I was in isolation the entire time because I was a bit overly precautious. I used one trash can for all of my trash then tied it up and threw it away so nobody could touch it. I stayed in one room of the house with my own bathroom. You won't need to worry if you live alone. Just wash everything you touched after the seven day period and don't let anyone in your place until you have thoroughly cleaned everything you came in contact with. You should flush you toilet two to three times after each use. I washed my laundry twice (as with my sheets/towels) and anything else I used. Then I washed out my washer in a flush rinse cycle to be sure everything was out of the machine before my family used it. I didn't do the plastic mattress cover, I just washed my mattress cover and sheets twice. The following is a list that they provided to me. I got most of my information on this site and from thyca.org.

1. Remain at home for at least the first 3 days after treatment. (I did seven days)
2. Use a separate bathroom for at least 3 days. (Also 7 days for me)
3. East separately for 3 days. (Again, I did 7 days)
4. Minimize time with other people for at least the first 3 days. (once again, 7 days)
5. Sleep in a separate room/bed for at least 7 days.
6. Avoid public transportation or prolonged auto trips with others for 3 days. (did 7)
7. Drink plenty of fluids for at least 2 days. (I kept drinking for many days)
8. Avoid all contact with minors (under age 18) and pregnant women for at least 7 days.
9. Daily showering is recommended for at least 3 days. (I shower at least twice a day anyway)

Some doctors recommend a full seven days on all of these points. I had 178 mCi's on my second dose and this was what they recommended. I personally think it's not enough time for some things. As you can see I did 7 days on almost all of these points.

As with the dose, it's kind of an educated guess of what they think will work for your body mass, type of cancer and staging. I think 150 mCi's is a fair/good dose. They know what they are doing when they decide your dose so not to worry. If they give you too much you will pass everything you don't uptake in the first three days.

Hope this helps. I really rather enjoyed my isolation time. I have become somewhat of a loner in my older years so it was almost like a little "me" vacation. Sometimes I wish I could do it again just to get the time alone to sleep and do whatever.

Blessings,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

You write so well. Think I'll request 150. Saw the scanner today. Doesn't look intimidation like the MRI tunnel and head-neck cage. Will meet a Nuc Med doc at least a week before the scan.

CherylMike
Posts: 118
Joined: Oct 2009

Are you referring to the head-neck "mesh type" mask? My husband had this for his head and neck cancer. Do they use this with thyroid cancer? He had EBR.

MarinMark
Posts: 139
Joined: Aug 2011

Not sure what you mean. It was not a mesh, but rather a stiff plastic had and neck cage. That plus the small tunnel looked very imposing.

CherylMike
Posts: 118
Joined: Oct 2009

The mask is fitted to the individual (it is pliable when being fitted, immovable when finished). It is meant to screw to the table so that you can not move when receiving treatment. Is this used on patients with thyroid cancer?

MarinMark
Posts: 139
Joined: Aug 2011

No, the mask is used to get better images of the head and neck. It has sensors. It is supposedly not to keep the head and neck still.

sunnyaz
Posts: 582
Joined: Oct 2010

He is having a RAI body scan, not the Mask. The mask is for direct External Beam Radiation when all else fails. If someone is no longer RAI avid and Chemo isn't an option. I am sure there are other instances where the EBR mask is used. I hope I never have to have that.

MarinMark
Posts: 139
Joined: Aug 2011

No Sunny. The mask to which I was referring is only diagnostic. It will not treat. Perhaps I misunderstood the question or gave the wrong answer.

CherylMike
Posts: 118
Joined: Oct 2009

I did not know they would use that for thyroid cancer. My husband had a mask and EBR for head and neck. I do not want to EVER have to do that. It was something that I do not even want to think about. Thank you for clarifying that it is a last resort, not a "standard". My doctors know what I went through with my husband and assured me that this cancer was SO different from his and his treatment.

ceanna
Posts: 11
Joined: Oct 2011

It shouldn't be scary. You are not in a narrow space but on a table with a box about 2 feet square moving over your body so at times your head is clear as it scans lower on your body. My hospital had a very nice picture on the ceiling and I could see it most of the time so made it more pleasant. Relax and think good things!

imelda
Posts: 9
Joined: Aug 2010

I'm not trying to scare you, just want you to be prepared - to keep it short, I also have a problem with claustrophobia and anxiety, and I really wish I'd taken my Xanax before my scan last time. Definitely tell them ahead of time that you will probably need some anti anxiety meds if possible for the scan.

MarinMark
Posts: 139
Joined: Aug 2011

OMG ! After reading the Internet forums I thought I was gonna go nuts. But the scans were easy and I had no side effects from thyrogen or radioactive iodine. The whole process in retrospect was easy and almost entertaining and fascinating.

sunnyaz
Posts: 582
Joined: Oct 2010

I hate to say I told you so. But, "I told you so." Unless you have been through it; you don't know. Everyone has their own perspective and react to things differently. Hindsight is 20/20 and the fear of the unknown is the worst part. Glad to hear you did okay.
Blessings,
Julie-SunnyAZ

snoopy100
Posts: 9
Joined: Oct 2011

I just want to thank everyone for spending their time and energy helping us newbies through this scary stuff. My RAI has not been scheduled yet. I am scared and looking foward to when it's over. I live alone and my cat will stay at my friends house for a few weeks.
Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Barbara,

There is no need to be afraid. You won't really notice a difference in your physical being. It's a simple treatment and as a bonus you get a little alone time. I really enjoyed my isolation time. I admit I was a little weirded out before my first treatment because I didn't know what to expect, that's normal. The second time around I saw it as a nice vacation. No dishes, no laundry, no having to go to work. I lead a very hectic and busy life, so when I had to be isolated it wasn't like punishment, it was a joy! Oh darn, can't be around people for a while;) I know it sounds crazy, but I took full advantage of the time to myself.

You are going to be fine.

Blessings,
Julie-SunnyAZ

Thyca78
Posts: 3
Joined: Nov 2011

I just had my RAI and my WBS and CT and Now I am just waiting for results. This seems to be the worst part.

Here is how it went for me.

TT over the summer. 15 central lymph nodes removed 6 tested positive for papillary cancer.

Endo wanted me to do RAI but there was a shortage in the thyrogen injections. She said it would be ok to wait a few months. I had RAI 4 months after surgery. LID 1 week before treatment (I did 2)

day 1 blood work and injection of thyrogen in the butt
day 2 2nd injection of thyrogen and tracer does of I131
day 3 Whole Body Scan and acutal dosage of I131, scan showed some uptake in thyroid bed. I was given 125mci

I was kept in the hospital for a couple of hours. Then sent home with the follwing instructions

I could eat a normal meal 24 hours after treatment
I was to stay away from people and sleep alone for 24-48 hours
After that i had no restrictions but I stayed home alone for 5 days.

5 days later I had another WBS along with a neck and chest CT scan

The scans were not bad at all. It's a bit relaxing. It's completely open, a square plate goes over your body and you have remain still. Last about 30 min. I feel like the chest and neck CT lasted a little longer or I may have just been tired of keeping still.

I did get a little nauseaus on day 2 of treatment, but not too bad, just didn't have much of an appitite, which sucked because I was looking forward to eating! Other than that no major side effects, a nasty metal taste in my mouth for a couple of days. I did get some heart burn and refulx but I don't know if that had to do with the treatment or not eating for 2 weeks and than eating so much.

I have to say the worst part is waiting for results.

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