Pet/CT scan FEAR

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

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

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. 

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

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

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. 

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. 

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 

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.