How scary is the rai scan ?

MarinMark
MarinMark Member Posts: 148
I couldn't tolerate an mri scan because I have claustrophobia. How freaky is the rai scan ? Is it scary ?
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Comments

  • sunnyaz
    sunnyaz Member Posts: 582
    Scan
    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
    MarinMark Member Posts: 148
    sunnyaz said:

    Scan
    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

    Thank you so much !! Nice
    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
    amorriso Member Posts: 185
    MarinMark said:

    Thank you so much !! Nice
    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 ?

    RAI dose
    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
    MarinMark Member Posts: 148
    amorriso said:

    RAI dose
    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

    Problem
    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
    teamwink Member Posts: 97
    MarinMark said:

    Problem
    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 ?

    RAI people tell it all :)
    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
    MarinMark Member Posts: 148
    teamwink said:

    RAI people tell it all :)
    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!

    Okay. Will go there before the weekend.
    Good idea.
  • sunnyaz
    sunnyaz Member Posts: 582
    MarinMark said:

    Thank you so much !! Nice
    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 ?

    Should meet with Nuclear Med Doc before
    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
    MarinMark Member Posts: 148
    sunnyaz said:

    Should meet with Nuclear Med Doc before
    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

    You write so well. Think
    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
    CherylMike Member Posts: 118
    MarinMark said:

    You write so well. Think
    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.

    Head-Neck cage
    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
    MarinMark Member Posts: 148

    Head-Neck cage
    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.

    Not sure
    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
    CherylMike Member Posts: 118
    MarinMark said:

    Not sure
    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.

    Yes, that is it
    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
    MarinMark Member Posts: 148

    Yes, that is it
    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?

    The mask is used for any head/neck MRI
    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
    sunnyaz Member Posts: 582

    Yes, that is it
    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?

    The Mask
    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
    MarinMark Member Posts: 148
    sunnyaz said:

    The Mask
    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.

    Don't think so
    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
    CherylMike Member Posts: 118
    sunnyaz said:

    The Mask
    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.

    My husband had the mask
    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
    ceanna Member Posts: 11
    not scary
    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
    imelda Member Posts: 9
    I'm not trying to scare you,
    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
    MarinMark Member Posts: 148
    imelda said:

    I'm not trying to scare you,
    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.

    A breeze
    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
    sunnyaz Member Posts: 582
    MarinMark said:

    A breeze
    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.

    I hate to say I told you so.
    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
    snoopy100 Member Posts: 9
    sunnyaz said:

    I hate to say I told you so.
    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

    All the information on this site has been so helpful.
    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