Pet/CT scan FEAR

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Suez39
Suez39 Member Posts: 162 Member

Hi H&N members:

We'll i'm still plugging away. Treatment over with and my ENT did scope me. He found an elevated tissue where my tumor was on base of my tongue. He said it is still the cancer or just swollen tissue from radiation. So I have to have a pet CT scan. I have Severe claustrophobia and anxiety. I took the test once & had a panic attack. When they put me in the tube they raised the platform and my nose was 1 inch away from the top of tube. And thier was no air circulation. Horrible experience!! So I told my radiation doctor that unless he gives me a "sedation" medicine I just can't go through the test again. He said he is working on it. My question is did any of you have this test and if so what's the Best medicine to get through it? I've had many sleepless nights crying too over this. I would appreciate anyone who can help me. Thank you very much. God bless & hugs to you!

Suez

 

Comments

  • SuzJ
    SuzJ Member Posts: 427 Member
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    Suez

    You just did radiation. Your head was bolted to a table repeatedly, AND YOU SURVIVED!

     

    You have done ALL that, and you are here to talk about it, A Pet scan shouldn't worry you at all. I know its easy to say, I find going for tests like that when I'm totally exhausted kinda helps me pass out (after waiting rooms I can sleep anywhere!)

  • mehrdad357
    mehrdad357 Member Posts: 66
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    Pet CT Scan and MRI Fear me too

    Hello SueZ39,

    I am also very clostrophobic, and had my first Pet CT scan on 8/16/2016.  When the tech put me on the bed and started moving me inside the tube, I told him stop this, I don't want to do the test. The tech who was an experienced and kind man of Russian origin, told me: "Look you most possibly have cancer. This is the only test that will find out where the cancer is. I can stop the test if you want, but I think you may have some clusterophobia, which we can resolve together." He had me lay down flat on the "bed" part. He suggested to elevate my head. We tried it and unlike you I did tell him that I still feel enclosed, but feel less helpless. He then suggested that there are points in the test that he has to pause the picture taking, and in those parts he can pause it more than he has to and talk to me, provided I don't talk to him, because then he'll have to start the whole PET all over. I agreed and there were a lot of pauses, and he kept talking to me telling me things like it really is a nice day today (true), telling me some about himself, and how he decided to come from Russia to here. I was so absorbed in his nice stories that I completely forgot about my clostrophia, till pulled me out and said: the test is done: you are free again. I was so grateful to this Russian gentleman that I insidsted getting all his info and reporting it to the director of Imaging services of Stanford Hospital. He finally agreed and I did report that if it was not for him, I would have cancelled my PET, which did find a BOT stage 4b cancer which had spread to both lymph nodes, 4c is terminal, so I was very close to the end of line.

    Over time I have had to do PET CT over and over, and not all technologist are as "good natured" as him, so I have learned to bring my own fear under control with PET, by thinking about some good moments of my life (too many good times), and I just had one on 8/1/18, and it was a breeze for me.

    There is another test you may have to do which is a lot worse that PET scan. It is MRI of head and NECk. It lasts longer than PET ayou are more enlosed and it is noisy like hell. For those I am very assertive and speak to the X-Ray department's supervisor and ask for either favorite technologfists (There are only 2 of them in Stanford that I like).  Most supervisors in imaging departments of any institutions are used to this and are willing to accomodate you, so I got Jason (1 of the 2)for my last MRI on 8/16/18, which made things go as smoothly as humanly possible. BTW: I don't like to be sedated under a machine.

    FYI: I am so clustrophobic that it gets me when I am flying in a Jet plane for more than say 2 or 3 hors flight. So last time I had a long flight from San Francisco to Boston to visit familly, I did ask for a flight with 1 or 2 sops on the way, so that I can get out of that "tin can" as I call it, for 1 or 2 hours. I love travrelling overseas, but because I don't have the option of stop (the plane has to fly over Atrlantic or worse pacific ocean), last time I was overseas was in 2003, when I spent 3 faboulus week in Europe. I loved this last trip and all the memories, but the 2 flights over Atlatic and back were a killer for me.

    take care

    Mhrdad

     

     

  • Suez39
    Suez39 Member Posts: 162 Member
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    Mhr dad and SuzJ

    Thx for your responses about pet scans. The radiation I had was'nt so bad for me. Yes my head was bolted down BUT my face mask had my whole face cut out and only my head n Neck was in the machine for 15 min. Was a breeze. Not like a pet scan where thier is No air and it takes 40-60 minutes!!

    Mhrdad thx for telling me about your nice Russian tech. Even talking would not calm me. I need something to make me drowsy or fall asleep. Why don't you like sedation medicine? I'm scheduled this tuesday but will cancel unless my doctor gives me something. I tried Real Hard the first time with no mediation and I was shaking for two days! My doctor's nurse supposed to get back to me. They are taking too long. Tuesday is around the corner. I wish I was as strong minded as you. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,305 Member
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    You are thinking

    About this too much dwelling on it way ahead. I know this may be difficult for you but get it in your head it is for your best interests, something you definitely should do and you have gotten through so much in your journey this you can do also. You are surrounded by skilled medical technicians that would not put you into any devices that would cause you harm. They have your best interests at heart and want to give you excellent care. They will take good care of you I know I was treated like family. Trust in God-Read the Bible and pray about it. I don't know if any of this helps I am not really claustrophobic but it was certainly a new experience for me when I got cancer of the throat to go through numerous PET scans in the tube and my radiation was in a tube style radiation 35 of them. Certainly unsettling at first and you have to set your mind to it that you will get through this also and it will pass before you know it. Do you have someone close that can go along that they will let be with you during your procedure? Don't know if any of this helps but my thoughts and prayers are with you I know you can do this-Take care-Russ

  • mehrdad357
    mehrdad357 Member Posts: 66
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    Suez39 said:

    Mhr dad and SuzJ

    Thx for your responses about pet scans. The radiation I had was'nt so bad for me. Yes my head was bolted down BUT my face mask had my whole face cut out and only my head n Neck was in the machine for 15 min. Was a breeze. Not like a pet scan where thier is No air and it takes 40-60 minutes!!

    Mhrdad thx for telling me about your nice Russian tech. Even talking would not calm me. I need something to make me drowsy or fall asleep. Why don't you like sedation medicine? I'm scheduled this tuesday but will cancel unless my doctor gives me something. I tried Real Hard the first time with no mediation and I was shaking for two days! My doctor's nurse supposed to get back to me. They are taking too long. Tuesday is around the corner. I wish I was as strong minded as you. 

    Pet CT Scan revisited.

    Helllo Suez39: You are correct I don't like to be sedated and fall aslepp under a machine. Don't know why. But getting back to you I think you maybe on EDT and I am on PST, and your test is Tuesday perhaps less than 24 hours away and I am concerned for you. If the test is in a largish hospital, don't be shy and call the supoervisor or manager of Imaging. Healthworker are in general compassionate and clusterophobia under a PET or MRI of head and neck is a well known fear for them. I do it before every MRI that I have to get one of my 2 favorite techs, annd the Imaging supervisor is happy to help me. On some occasions when I cannot get my favotrite tech., I  try to think of my best life experiences visually, such as my faorite times in the spring driving with friends in beatiful small roads of Holland, especially in towns of Lisse, Haarlem,... and seeing all sorts of flowers (not just Tulips) on both sides of the roads. Or here beatiful sites of Bar Harbor,Maine and the Redwood forest in way northern CA. I am a mathematician, but trust me that my logic does not help me with my irrational fears. When I was udergraduate in Boston, I was a math major and I was among the top prerformers, by studying very hard (graduated Summa **** Laude). My calssmates always looked up to me, and even non math majors. Especially girl students would always hit a conversation with me, thinking I am a "Genius", and me saying not really I jsut study hard, because I love Math. In any case I became friends with many college mates, and had a lot of girl friends. Somtime I think of some of those intimate moments when I was an udergrad, and the comination of these makes me unawre that I am under a clustrophic and noisy (which makes it worse) MRI machine.

    Please remeber that nothing that you have experienced is out of bounds for yourself if it helps distract you from a very scary experience.

    I hope you can read this post very soon. But in any case please let me know how the Pet went.

    Mehrdad

  • mehrdad357
    mehrdad357 Member Posts: 66
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    Suez39 said:

    Mhr dad and SuzJ

    Thx for your responses about pet scans. The radiation I had was'nt so bad for me. Yes my head was bolted down BUT my face mask had my whole face cut out and only my head n Neck was in the machine for 15 min. Was a breeze. Not like a pet scan where thier is No air and it takes 40-60 minutes!!

    Mhrdad thx for telling me about your nice Russian tech. Even talking would not calm me. I need something to make me drowsy or fall asleep. Why don't you like sedation medicine? I'm scheduled this tuesday but will cancel unless my doctor gives me something. I tried Real Hard the first time with no mediation and I was shaking for two days! My doctor's nurse supposed to get back to me. They are taking too long. Tuesday is around the corner. I wish I was as strong minded as you. 

    Don't call and cancel

    Suez39: Have you heard anything from your doc. If there are no penalties involved don't call and cancel. In Hospitals they take a long time to reschudle. Maybe you'll hear from your Doc otr his nurse late today or before your scan tomorrow. What time is your scan scheduled for?

    BTW: At least as far as my clostrophobic fears go I don't consider myself strong minded.

    Mehrdad

     

  • Suez39
    Suez39 Member Posts: 162 Member
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    Pet scan

    Hi Mehrdad. 

    I finally got a phone call from my nurse. She said they cancelled my appt for tomorrow. My radiation doctor is arranging for me to have sedation given to me at the Imaging facility. It's not in a large hospital rather an independent xray office. They said they will call me back with the final date of my test. 

    When I had my treatments I tried to put my mind on pleasant experiences I've had but that didn't work. I just counted the radiation clicks when I was in the machine and then I knew when I was almost done. My whole body was never in the machine like a pet scan. I am an intake specialist for elderly people facing emergencies with thier heating bills. This work is from the county. I've always helped people and I get alot of satisfaction from it. Now I need the help and just feels strange the tables are turned. Thank you very much for your concern as some people think I shouldn't worry and that i making too much of it. But everyone is different.  I will keep you posted how I make out. 

  • Suez39
    Suez39 Member Posts: 162 Member
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    Russ

    Thank you for responding. I'm not dwelling too much on this. I did have a pet scan and know what is expected of me. Since you aren't claustrophobic you don't quite know how it feels. Don't take that the wrong way but I don't have anyone to to stay in the room with me. And I have worked with many techs and where this office is they don't seem to be thoughtful to your situation. Very professional but not as caring as they should be. Same way when I was in the hospital for pet scan. But my radiation techs were great. And I do have faith in God but still doesn't ease my fear. Take care. Suez

  • mehrdad357
    mehrdad357 Member Posts: 66
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    Suez39 said:

    Pet scan

    Hi Mehrdad. 

    I finally got a phone call from my nurse. She said they cancelled my appt for tomorrow. My radiation doctor is arranging for me to have sedation given to me at the Imaging facility. It's not in a large hospital rather an independent xray office. They said they will call me back with the final date of my test. 

    When I had my treatments I tried to put my mind on pleasant experiences I've had but that didn't work. I just counted the radiation clicks when I was in the machine and then I knew when I was almost done. My whole body was never in the machine like a pet scan. I am an intake specialist for elderly people facing emergencies with thier heating bills. This work is from the county. I've always helped people and I get alot of satisfaction from it. Now I need the help and just feels strange the tables are turned. Thank you very much for your concern as some people think I shouldn't worry and that i making too much of it. But everyone is different.  I will keep you posted how I make out. 

    After your PET scan if you have cancer go to a teaching hospital

    Hello Suez39, 

    Yes,

    I saw that generic comment from Major and he has no idea about closterophobic people. Please let me know when your PET is done and also when you get the result. If it turns outto be H & N cancer,  I would highly recommend that you go to a teaching hospital for your treatment. They are constantly doing cancer research and have a lot more resources both brainwise and equipment than an indepenendent Dr. or a small or medium clinic

    Mehrdad

     

     

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,305 Member
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    Suez39 I am glad it is

    all working out for you and they came up with the solution of the imaging facility and sedation. This sounds like the solution you were looking for. Your Doc must have finally realized you needed a different approach. The techs will know the details of your situation and should be able to make you comfortable. I apologize if I said anything wrong in my first answer I was trying to give you support but you are right not being claustrophobic I really don't fully understand. Praying they take good care of you and everything goes smoothly for you and when the results of your scan are read it says emphatically N.E.D. (No Evidence of Disease) the words we cancer folks like to hear. Take care & God Bless-Russ

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    edited August 2018 #12
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    Suez39, my heart is hurting

    Suez39, my heart is hurting for you.  May you find some relief from the pain.  

  • donfoo
    donfoo Member Posts: 1,771 Member
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    Suez39 said:

    Pet scan

    Hi Mehrdad. 

    I finally got a phone call from my nurse. She said they cancelled my appt for tomorrow. My radiation doctor is arranging for me to have sedation given to me at the Imaging facility. It's not in a large hospital rather an independent xray office. They said they will call me back with the final date of my test. 

    When I had my treatments I tried to put my mind on pleasant experiences I've had but that didn't work. I just counted the radiation clicks when I was in the machine and then I knew when I was almost done. My whole body was never in the machine like a pet scan. I am an intake specialist for elderly people facing emergencies with thier heating bills. This work is from the county. I've always helped people and I get alot of satisfaction from it. Now I need the help and just feels strange the tables are turned. Thank you very much for your concern as some people think I shouldn't worry and that i making too much of it. But everyone is different.  I will keep you posted how I make out. 

    meds just fine

    Many people receive various anti-anxiety meds so please do feel good about taking something to ease the stress, only makes sense. If you think a fan blowing air through the tube would help, ask them to do it. At worst case, bring one from home and use it. Tell them to go to hell if they resist. Whatever makes you more calm, do it! Good luck, never OK to suffer unnecessarily. 

  • Suez39
    Suez39 Member Posts: 162 Member
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    Russian mom & don & mehrdad

    Than you all for your responses! And Don Great idea about a fan! Doubt they will do it with thier fan or let me have a small plastic one on the tube but I will ask! Its hard to keep breathing your own air!!

    And Russia thier is no hard feelings. I like many others on this site have been through Alot of tests machines pain etc.. Thier is only so much we can take. I have to take pain meds to go to sleep at night or else I have coughing spells and my throat hurts pretty bad. I hate tak I ng drugs that can be addictive.

    Also I had a Great job helping people and it hurts financially & emotionally to be sick with cancer. My mom is going to show me a church nearby where I can go to pray. I hope God hears my prayers to keep me alive. I am a good hearted lady who enjoys being kind & helping people. Well it's late & I'm going to sleep hopefully. My hugs prayers & thoughts to all of you!!

  • patricke
    patricke Member Posts: 570
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    SCANNED

    HI Suez, I'm glad to hear that your doc is prescribing the PET/CT scan for you, as it is the gold standard for beast detection.  I wish that I had a solution for your apprehension, but I unfortunately do not.  I am a frequent flyer of  having been through a zillion of the scans. I just get as comfortable as possible, close my eyes, and almost go to sleep; or maybe I do actually doze off.  For me the procedure is over before I know it.  I hope that you are successful in coming up with a solution.  

    Patrick 

  • Suez39
    Suez39 Member Posts: 162 Member
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    Pet scan

    Hi Patrick & all H & N members that responded. I still am very worried about my upcoming scan but nothing I can do. I hope I can make it. If I can be somewhat sleeping I think I will be alright. They are going to sedate me at the imaging facility. Trying now to find out what they are giving me. Also wanted to tell everyone I appreciate your feedback. Thank you!

  • wbcgaruss
    wbcgaruss Member Posts: 2,305 Member
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    Suez39 sending

    final wishes to you that all goes as smoothly as possible and you get through this and you come out with NED (N0 Evidence of Disease) on the other side.

  • Dean54
    Dean54 Member Posts: 160 Member
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    Good luck Suez

    Actually, to me anyway, the scans were the easiest part of all of this except for the anxiety of hoping for a positive outcome. Let us know how it goes please?