Please help, PET scan question

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dreidteacher
dreidteacher Member Posts: 53
edited June 2014 in Stage III Breast Cancer

 Sorry this is long and rambles.

I went to my new breast surgeon on Tuesday( other one retired) due to some concerns I have. I had surgery in May but still get swollen with fluid and have pain on the side of the largest tumor. There are two areas that are very painful if touched. I thought removing fluid could help.  She examined me but didn't remove fluid.

I also have headaches and back pain that I blame on Tamoxifen.  Due to all  this I will have my first scan. I have never been scanned before and the doctor wants it for restaging.  What will a PET scan tell? How long does it take? Is it uncomfortable?  Is it like an MRI?   A few years ago my husband had an MRI and they had to stop as he couldn't handle it. They had to reschedule and drug him.

Thank you for any information.

Comments

  • petjunkie
    petjunkie Member Posts: 317
    edited April 2012

    Hi,

    Sorry you have to go through this. Personally, I find PET scans easier than MRIs. I get them every 2-4 months, depending on how I'm responding to treatments, so I've had a lot of them. It's probably a little different at different facilities, but this is my experience. I do a PET/CT scan combo, so have to drink the barium stuff. You may not have to do that.

    When I arrive at the center they put me in my own room. I should mention that for prep i can have only water 12 hours before the test. No exercise for 48 hours before. They used to ask me to do a low carb/high protein diet the day before, but they no longer do that. Anyway, first thing is they put in an IV. I have a power port, but they don't use it for PETs, something about the speed of the tracer.

    I start to drink the barium and they take some vials of blood and they check my glucose level. Then, a tech from nuclear medicine comes in and injects a radioactive tracer through the IV. It is not at all painful. Then, I have to stay completely still in the reclining chair for 45 minutes. They don't even want me to read because they don't want eye movements picking up tracer. I can listen to music on my ipod. I find it very, very boring.

    When they come get me to walk me back to the machine, I stop off to pee because they want your bladder empty so they can see everything better. I lay on the narrow table with my hands above my head. It's like a donut around the table, not fully enclosed like an MRI. I don't have any anxiety or claustrophobia about the machine, while an MRI makes me very anxious. The scan takes about 30-40 minutes total, I just have to stay still. The table moves back and forth through the donut. It makes a whirring sound, but not loud banging like an MRI.

    The last few minutes of my scan, they inject a contrast through the IV and do the CT part-- it's the same machine. Because some people have allergic reactions to that contrast, they ask me to stay in the waiting area 15-20 minutes after the scan to make sure I don't show any signs of that. They have juice and snacks, which are nice after fasting for so long.

    That's it-- there is nothing painful other than getting the IV put in. I usually take ativan before I go in now just because I do these tests so often and I find it so tedious to be still for so long. Sometimes I'm more relaxed than others-- if we suspect a chemo has stopped working and I have progression, I am more anxious and find it awful to lay in that chair and then on that table without any real distraction. Sometimes I have discomfort like back pain for laying on that table so long-- ask for a pillow for under your knees and anything else you think might help with that.

    My PET scans are sent to the radiologist, who usually takes about a day to get the report to my onc. I meet with her 1-2 days after my scan to get results. The scan will show areas of "uptake" which can indicate several things, but a good radiologist should be able to tell if any of these are areas they think are mets. My PET scans show mets in my bones and liver. It will pick up other things-- fibroids in my uterus, gigivitis in my gums, etc.

    I know how nerve-wracking this testing can be. But PET scans are really good-- super expensive, so many people have to rely on just CTs.  Sounds like your new surgeon is giving you excellent care. I hope you get great results and that they can find an easy way to releive your pain.

  • dreidteacher
    dreidteacher Member Posts: 53
    edited April 2012

    Thank you Petjunkie for the very helpful reply. I appreciate you taking the time to answer my questions. I'm sorry that you have to have scans so often.

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2012

    PET's are pretty simple. Always my preferred scan.

    There are some rules and they do seem to vary depending on the scan location. At my hospital, no strenuous activity the day before. Normal lunch and then dinner must be sugar/carb free. I have to admit, I generally make myself a tenderloin steak with hollandaise sauce. [Figure there has to be some benefit to having mets after all!]

    Another high fat meal 4-5 hours before the scan. No dairy or sugar.

    Upon arrival they take you to a "quiet room" where they test your blood sugar levels. If they are low enough, you get the radioactive injection and sit, quietly for an hour. My place allows me to work on the computer or read, but other women aren't allowed to do a thing.

    After the hour has passed you are taken to the machine. At my place, they no longer tie you onto the board. Instead you lie on your back, they put a wedge under the knees, and ask if you can put your arms over your head. 35 minutes later it is done.

    Again, my hospital does this test in a sun filled room. To be honest, I sleep now. Tech Andrew says that it isn't unusual.

    Oh... and I bring my own pajama bottoms since I hate the hospital ones.

    Hope that helps.

    *susan* 

  • petjunkie
    petjunkie Member Posts: 317
    edited April 2012

    Oh Susan-- good call! No metal in the machine, so if you can wear your own comfy clothes it's way better than having to wear a hospital gown. No zippers, clasps, etc. I usually do pajama pants too, and a tank top or sports bra, cardigan or whatever. It's cold in the room because the machine can overheat. They have blankets, but I'm always thankful that I've worn thick socks.

  • dreidteacher
    dreidteacher Member Posts: 53
    edited April 2012

    Thank you kind ladies for your tips.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • dreidteacher
    dreidteacher Member Posts: 53
    edited April 2012

    Thank you Day. My husband means well but he had me scared of the scan.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • bak94
    bak94 Member Posts: 1,846
    edited April 2012

    dreidteache-I had surgery in november and still have problems with fluid also! I just went in and had it drained and biopsied for infection and cancer. It seems it is not an infection or cancer, just fluid. The bad thing is since I had it drained the area is more sore! They said that it is best to just let the body reabsorb it at this point. So frustrating because it is painful.

    All the other ladies gave you great advice about the pet scan. It is a bit boring but not bad at all.

  • NancyD
    NancyD Member Posts: 3,562
    edited April 2012

    Some other suggestions:



    Try to get the earliest appointment so you are least inconvenienced by any dietary restrictions ( no food after midnight...).



    Bring an extra change of clothes. Depending on whether they inject you with a radioactive dye, you might need the clothes. The dye makes you need to pee really badly, and if you do have an accident, they have to take the wet clothes and dispose of them because of the slight radioactivity in them.



    Other than that, I agree with the other posters that it is much easier than an MRI.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • dreidteacher
    dreidteacher Member Posts: 53
    edited April 2012

    Thank you for all the helpful tips. I still have plastic silverware from chemo. I will remember to stay away from our dog. The sheet from the hospital only said high protein meal before fasting, loose clothing and no metal. Oh yes, no exercise before. All of you helped and explained so well I feel better about this procedure. I probably should have had something like this before now.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • MicheleS
    MicheleS Member Posts: 937
    edited April 2012

    PET scans are my favorite... Super easy.  In addition to what everyone has said-- I always wear yoga pants (with no metal grommets), a cami, and big sweatshirt.  I never have to mess with the hospital gown because I make sure I am metal-free.  :)

    Also, if you can manage to be low-carb for a couple days-- it *may* make your test more sensitive.  There were a couple studies out about that.  So, if they are looking for micro-mets, it could help.  Certainly not a necessity but I always feel better knowing I *tried* to help get a more sensitive scan.

    It is best if you can stay distanced from little kids for 24 hrs or so.  For instance, I try not to hold my daughter on my lap.  Generally, I try to get the 1st appt of the morning and then go to work after! LOL!  I'll expose my co-workers! (They aren't on my lap anyway. ha ha!)

    Finally, the 1st few times you pee, flush twice.  I have a friend who is a radiation safety officer and he told me that.  The radiation is ultimately cleared through your kidneys and into the urine (before it ultimately decays to nothing) so it help to wash that stuff out of your potty.  (It would only be radioactive for a day or so anyway because of the half-life...

    Oh-- and drink tons of water both before and after.  It will help your body drive down blood glucose while you are fasting and will help you clear the radiation after.

    good luck!!

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • dreidteacher
    dreidteacher Member Posts: 53
    edited April 2012

    Thank you for all of your help. The scan went well and was fine due to your helpful answers. Hardest part was trying not to cough during the scan. Now the wait for the results.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited April 2012

    Glad to hear it went ok, waiting with you, let us know.

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