Waiting for scan results. Is this part of scanxiety?

Posted by azkidney57 @azkidney57, Sun, Oct 27 9:00am

So I am waiting to know the results of my recent scans. Is this part of scanxiety? Or is it results anxiety or post testing angst? Whatever one could call it I don’t like it! I wish I could know right away! The results of my own scans have to go through my doctors first! I realize that is how it’s done but it makes me more anxious. I don’t like having to wait. How does anyone else handle the waiting game? I have been trying to be relaxed about it. The underlying dread of “what if”! My arm still hurts from where I received the contrast for my MRI. I had a dream about being inside the “tube”. The clicking and clacking of machine the voice that told me to hold my breath and breathe. I wonder if I could get a gin and tonic to take the edge off. Then I was cold and hot at the same time! It was a bit like torture. The tube is like a coffin, confining and restricting. It was uncomfortable in the machine and then my nose started to itch and I couldn’t move my arms!

@azkidney57. Not in any way an area I'm knowledgeable about, but it seems to me that your terrible discomfort with the MRI would qualify you to receive meds given to those who are claustrophobic. Worth discussing with your doctor.

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@trishanna

@azkidney57. Not in any way an area I'm knowledgeable about, but it seems to me that your terrible discomfort with the MRI would qualify you to receive meds given to those who are claustrophobic. Worth discussing with your doctor.

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@trishanna @azkidney57 I have yearly MRIs and initially was offered an anti-anxiety med if I needed it (lorazepam). I do not. My MRIs generally take just under an hour. The only part that bothers me is that I have to have my arms up next to my head and by the end of the MRI they are aching. I don't really feel claustrophobic because I just close my eyes.
I am hard of hearing and have to take my hearing aids out during the MRI because it could affect them. That's actually an advantage because although I cannot hear the instructions clearly I know them well enough to know what is being said. Maybe you could wear a non-deafening earplug so that things will not be as loud.
I have been very surprised myself that I have been able to lay so still for such a long amount of time!
JK

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Scanxiety seems to be part of the process. Happens to me too. The docs usually have the images and text intreprations within 2 – 3 hours on their laptops if it was done in large hospital. I personally prefer my doc to tell me when he has time to explain. If I don't get a call quick, news is usually good. I use patient portals at our hospital so get the reports on my laptop after several days. Then I can start researching all that technical jargon and translate to layman English. Then I can formulate additional questions to hopefully relieve some of the anxiety. As to MRI sometimes they let me listen to music and their breathing instructions override the music. My MRI's usually only lasted about 20 minutes. Hope you get good news.
Harold

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@azkidney57

What are ways to deal with MRI’s? I just had my first scanning, MRI of abdomen and pelvis with and without contrast. The experience was one I don’t care to repeat. Yet my future holds more scans, more CT’s, MRI’s. The CT scan was fast. The MRI was like a torture. I wonder what other experiences await me as my cancer journey unfolds. What fresh hell awaits? I will try meditation. I welcome any thoughts, advise etc.

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@azkidney57 Hi, again! Just responded to you in another discussion! I, also hate MRIs, but I try to think of them positively—they can show good outcomes. I have a “meditation” thing I say to myself during the test. Valium also helps. My mother, who had her first MRI at age 95, says the sounds make her think of a teenager in the next car playing his music too loud! One person has suggested asking the technicians to put on loud music. Becky

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@azkidney57

What are ways to deal with MRI’s? I just had my first scanning, MRI of abdomen and pelvis with and without contrast. The experience was one I don’t care to repeat. Yet my future holds more scans, more CT’s, MRI’s. The CT scan was fast. The MRI was like a torture. I wonder what other experiences await me as my cancer journey unfolds. What fresh hell awaits? I will try meditation. I welcome any thoughts, advise etc.

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Good morning @azkidney57, I have had my share of MRIs. Here is what helped me, at least until the first head/ brain one.
1. I schedule them as early as possible to avoid “awfulizing” all day. (I like that word, @gingerw ).
2. I accept my friend’s offer to go with me. She is a nurse and so she is able to sit in the room with me.
3. And this one is very helpful……I ask that the technician NOT touch my head or body with any part of the equipment or accessories. I keep my eyes closed. This enables me to not feel the restraining environment and jump right into claustrophobic panic. Instead I envision a favorite beach or mountain. And I will be super honest and admit that imagining great sex can cut the time and put a damper on a frightening emotional response. Give it a try and then let me know how it works so that others can benefit. May you be safe and protected. Chris

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@azkidney57

What are ways to deal with MRI’s? I just had my first scanning, MRI of abdomen and pelvis with and without contrast. The experience was one I don’t care to repeat. Yet my future holds more scans, more CT’s, MRI’s. The CT scan was fast. The MRI was like a torture. I wonder what other experiences await me as my cancer journey unfolds. What fresh hell awaits? I will try meditation. I welcome any thoughts, advise etc.

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@azkidney57 , I have had several MRI's and every time I go for mine they will have ear phones with music playing loud (not to the point of hurting my ears)
and they would ask what kind of music I wanted to listen to. However, I understand not all machines are equipped with it, so I would recommend what @becsbuddy said. My mother was claustrophobic and they advised her to take a Valium which did help her. Try to think nothing but happy thoughts.

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@artscaping

Good morning @azkidney57, I have had my share of MRIs. Here is what helped me, at least until the first head/ brain one.
1. I schedule them as early as possible to avoid “awfulizing” all day. (I like that word, @gingerw ).
2. I accept my friend’s offer to go with me. She is a nurse and so she is able to sit in the room with me.
3. And this one is very helpful……I ask that the technician NOT touch my head or body with any part of the equipment or accessories. I keep my eyes closed. This enables me to not feel the restraining environment and jump right into claustrophobic panic. Instead I envision a favorite beach or mountain. And I will be super honest and admit that imagining great sex can cut the time and put a damper on a frightening emotional response. Give it a try and then let me know how it works so that others can benefit. May you be safe and protected. Chris

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Chris, thank you for your recommendations. I will try to schedule my next scan early. Taking a friend was something I never thought of before. I like your idea about thinking about sex, made me laugh! Thanks

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@lieutenantasmith

@azkidney57 , I have had several MRI's and every time I go for mine they will have ear phones with music playing loud (not to the point of hurting my ears)
and they would ask what kind of music I wanted to listen to. However, I understand not all machines are equipped with it, so I would recommend what @becsbuddy said. My mother was claustrophobic and they advised her to take a Valium which did help her. Try to think nothing but happy thoughts.

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I may just ask for something to calm my nerves next scan. I didn’t even think about it as an option. This was my first MRI ever. I have heard about how some patients hate them and now I know why. Thank you!

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What are ways to deal with MRI’s? I just had my first scanning, MRI of abdomen and pelvis with and without contrast. The experience was one I don’t care to repeat. Yet my future holds more scans, more CT’s, MRI’s. The CT scan was fast. The MRI was like a torture. I wonder what other experiences await me as my cancer journey unfolds. What fresh hell awaits? I will try meditation. I welcome any thoughts, advise etc.

REPLY
@azkidney57

What are ways to deal with MRI’s? I just had my first scanning, MRI of abdomen and pelvis with and without contrast. The experience was one I don’t care to repeat. Yet my future holds more scans, more CT’s, MRI’s. The CT scan was fast. The MRI was like a torture. I wonder what other experiences await me as my cancer journey unfolds. What fresh hell awaits? I will try meditation. I welcome any thoughts, advise etc.

Jump to this post

@azkidney My mother had her share of scans, also. She had had mini-strokes. Two things didn't help: she had some mental health issues and in her last 10 yrs developed Alzheimer's with dementia. The only way they could keep her calm enough was for my dad to be in the room, rubbing her feet. I recall as a young child she taught me to rub her feet with a simple lotion and it always really relaxed her. Perhaps if they would allow, you could pipe in an audio book to get lost in?
Ginger

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@azkidney57

What are ways to deal with MRI’s? I just had my first scanning, MRI of abdomen and pelvis with and without contrast. The experience was one I don’t care to repeat. Yet my future holds more scans, more CT’s, MRI’s. The CT scan was fast. The MRI was like a torture. I wonder what other experiences await me as my cancer journey unfolds. What fresh hell awaits? I will try meditation. I welcome any thoughts, advise etc.

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@azkidney57, thanks for starting these discussions about scanxiety. You'll notice that I merged the two separate discussions into one discussion that can be seen in the Kidney group, Cancer group and the Cancer: Managing Symptoms group. This will bring everyone together to discuss this important topic. There's also a related discussion from a little while ago that you may be interested in reading:
– Coping with anxiety while waiting https://connect.mayoclinic.org/discussion/coping-with-anxiety-while-waiting/

I also want to welcome @lieutenantasmith. Can you share why you needed MRIs?

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@gingerw

@azkidney My mother had her share of scans, also. She had had mini-strokes. Two things didn't help: she had some mental health issues and in her last 10 yrs developed Alzheimer's with dementia. The only way they could keep her calm enough was for my dad to be in the room, rubbing her feet. I recall as a young child she taught me to rub her feet with a simple lotion and it always really relaxed her. Perhaps if they would allow, you could pipe in an audio book to get lost in?
Ginger

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That’s a thought an audio book. That never crossed my mind. I would try it to get my mind focused on something else. Thanks Ginger 😊

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I always log into my portal and read the radiologists report. It's usually uploaded within hours of my scan.
There are times that it takes a bit logerbwith radiology due to the amount of images, but I always have the report prior to my oncology appointment.
Are you not able to do this?

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@azkidney57

I may just ask for something to calm my nerves next scan. I didn’t even think about it as an option. This was my first MRI ever. I have heard about how some patients hate them and now I know why. Thank you!

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@azkidney57– You can get medicine from your doctor before hand unless it interferes with your treatments or other meds. that you might be taking. Scanxiety seems to be a very normal reaction for a lot of people prior to scans. You have to ask your doctor before hand about taking tranquilizers. You can't ask for one when you get to the testing area.

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No matter what cancer someone has the anticipation, the “scanxiety” is there for all of us. I am into my 5 th month as a kidney cancer patient. I had my right kidney removed May 2019. Much has happened in those 5 months. I just received my scan results. I had an MRI abdomen/ pelvis and a CT of chest and I am cancer free at the moment. I am grateful I don’t have cancer but I have many months to go. I am under “surveillance “. I had anxiety prior to scanning, during the scans, then waiting for results. Not fun! This business of having cancer takes an emotional toll. For me I had the added stress of a cancer center which has not and did not inform me of my results in a timely manner. It seems if you have a localized disease many patients experience this slowness of response. Patients are under great duress as they wait for results. I am the one who ultimately got a hold of my own scan results. I had been waiting to hear from my cancer center and it was a struggle to get someone to call me. A nurse did finally call but I had a copy of my results before her call. I am disappointed with my cancer center! I have been disappointed! I have found them, my cancer team, slow to response in general. There is only one person at my cancer center who is not a direct part of “my team” who advocates for me. This nurse is my “go to person. I am grateful for her continued support. So as a cancer patient I am learning much. Biggest thing I have learned; a patient has to constantly adovate for themselves or have someone to do it for them! At this point my new concern is what if I develop cancer. What if I become ill, weak and sick? How responsive can I expect my “cancer team” to be. I am not impressed them. I have lost trust. The very first oncologist I met left shorty after I became his patient. Not anyone’s fault. I felt shuffled around. The second oncologist chosen for me was younger and more “inexperienced “. That made me nervous. I went to the Mayo Clinic at a near by city, a 2 hr drive away. I saw an expert renal cancer specialist. My experience with the Mayo Clinic was different. I was impressed with the Mayo Clinic and oncologist I saw. I am seriously considering moving to this city to be closer to the doctor. I have not been so impressed with the cancer center where I go now! My new oncologist is more experienced but I have lost “trust”. I feel nervous once again and my gut is telling me to take “action”! Moving to another city would take time. Many things to consider. I work full time and care for my elderly mom who is frankly healthier than I am. I am under so my stress right now it hurts! I have lost weight from stress! There is so much I have to deal with all the time I feel under duress! If the cancer doesn’t kill me the stress will! I will need to seek help for my stress. I really can’t handle all this on my own. I feel like I am drowning! I have to tell myself that I am okay. I don’t have cancer right now. I need to stay focused so I can be strong for whatever lies ahead! I will be fighting more battles. I must remain strong while I am still healthy enough! Sound familiar?

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