Waiting for scan results. Is this part of scanxiety?

Posted by azkidney57 @azkidney57, Oct 27, 2019

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!

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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Hello @azkidney57, I brought your message and update on your scan and "scanxiety" back to your original scanxiety discussion so members could see your update. Staying strong and being prepared for potential new battles is a great attitude to have. If you are comfortable, would you mind sharing what you are doing to stay ready? Any tips for how to manage the stress of "scanxiety" or the waiting for your next battle? The managing of the stress?

REPLY
@azkidney57

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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@azkidney57– First off and big yay, yay, yay. Cancer free right now is a 100% positive thing! Secondly hear hear on how you are advocating for yourself and phrasing it beautifully. If you can, I vote for making the move. I travel over 1 hr to get to MGH for my treatments, tests, scans etc. If your illness deams it necessary to be closer than don't hesitate. Other than your cancer are there other outside factors that are stressing you out that you can change>

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@JustinMcClanahan

Hello @azkidney57, I brought your message and update on your scan and "scanxiety" back to your original scanxiety discussion so members could see your update. Staying strong and being prepared for potential new battles is a great attitude to have. If you are comfortable, would you mind sharing what you are doing to stay ready? Any tips for how to manage the stress of "scanxiety" or the waiting for your next battle? The managing of the stress?

Jump to this post

Justin, thanks for your interest. As I mentioned I am 5 months out since my Laparoscopic Nephrectomy May 2019. I had a large renal cell carcinoma. I remain cancer free at present. MRI and CT scans clear. I repeat scans in 4 months. These were the first set of scans for me. I experienced scanxiety! It was not pleasant. The cancer center where I go did not call me with results in a timely manner. It added stress. I find that after struggling with an issue I become depressed afterwards like right now. I have to repeat the cycle of scans again and again. I dislike my cancer center for their lack of responsiveness and this has been an issue from the start. I must continually aggressively advocate for myself. I care for my insulin dependent mother and so I advocate for her as well. I started my job 3 months ago. I worried I would be fired. I wasn’t learning my new job duties fast enough and my boss put me on “probation”. This past Friday my boss called me into her office and told me I have “improved” so I have been removed from probation. Starting a new job after a big cancer surgery after losing two close friends from cancer then almost being put on oral cancer medication was bad timing on my part! Lesson learned. My energy level has not returned after having a kidney removed. The surgeon told me it would take several months. Right now I feel tired, depressed and anxious but I am cancer free which is a good. It’s like I just ran a long, grueling race. I have to “recharge” and prepare for the next one. My plan is to simplify my life as much as possible where ever I can. I have noticed some of my friends have abandoned me. I haven’t been very social as of late. I will let them go! My real friends will always be there for me. I will continue to advocate for myself because I have to. I am seriously considering moving to Phoenix. I feel I would be better served at the Mayo Center there. I will need to come up for a strategy for the next MRI because it was NOT a pleasant experience. I will probably chose to take something to calm my nerves before scans. I am grateful for this site it has proved to be invaluable! Now for today my plan is to take my dog for a long walk as I attempt to “de stress” myself because I have another work week ahead of me.

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@merpreb

@azkidney57– First off and big yay, yay, yay. Cancer free right now is a 100% positive thing! Secondly hear hear on how you are advocating for yourself and phrasing it beautifully. If you can, I vote for making the move. I travel over 1 hr to get to MGH for my treatments, tests, scans etc. If your illness deams it necessary to be closer than don't hesitate. Other than your cancer are there other outside factors that are stressing you out that you can change>

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Merry, the other outside factors that are non cancer related that stress me are my job, my family, certain members, my boyfriend was an issue but he left. I am so relieved! I can change jobs. As for my family,” it is what it is”. At this point I am accessing the damage and taking stock of my life. I don’t feel I can plan for the future anymore. I can plan for 4 months at a time. I know I am lucky I have that. I know others don’t. The truth is my life is now centered around the “cancer”. I don’t want it to take over my life but it really has to a great extent. It is the big white elephant in the room. It can’t be ignored! I just need to learn how to live the best life I can. That will be my new challenge.

REPLY
@azkidney57

Justin, thanks for your interest. As I mentioned I am 5 months out since my Laparoscopic Nephrectomy May 2019. I had a large renal cell carcinoma. I remain cancer free at present. MRI and CT scans clear. I repeat scans in 4 months. These were the first set of scans for me. I experienced scanxiety! It was not pleasant. The cancer center where I go did not call me with results in a timely manner. It added stress. I find that after struggling with an issue I become depressed afterwards like right now. I have to repeat the cycle of scans again and again. I dislike my cancer center for their lack of responsiveness and this has been an issue from the start. I must continually aggressively advocate for myself. I care for my insulin dependent mother and so I advocate for her as well. I started my job 3 months ago. I worried I would be fired. I wasn’t learning my new job duties fast enough and my boss put me on “probation”. This past Friday my boss called me into her office and told me I have “improved” so I have been removed from probation. Starting a new job after a big cancer surgery after losing two close friends from cancer then almost being put on oral cancer medication was bad timing on my part! Lesson learned. My energy level has not returned after having a kidney removed. The surgeon told me it would take several months. Right now I feel tired, depressed and anxious but I am cancer free which is a good. It’s like I just ran a long, grueling race. I have to “recharge” and prepare for the next one. My plan is to simplify my life as much as possible where ever I can. I have noticed some of my friends have abandoned me. I haven’t been very social as of late. I will let them go! My real friends will always be there for me. I will continue to advocate for myself because I have to. I am seriously considering moving to Phoenix. I feel I would be better served at the Mayo Center there. I will need to come up for a strategy for the next MRI because it was NOT a pleasant experience. I will probably chose to take something to calm my nerves before scans. I am grateful for this site it has proved to be invaluable! Now for today my plan is to take my dog for a long walk as I attempt to “de stress” myself because I have another work week ahead of me.

Jump to this post

@azkidney57 I’m so happy to read this posting! You have really come a long way in a short time. You go girl! I, too, just had an MRI and got an all clear on the inflammation in my brain. I was thinking of you and how one can control scanxiety. Besides the Valium, I didn’t look at the machine at all. I kept my eyes closed the entire time and just breathed slowly. Much better experience this time! Won’t even think of it for 6 months
Really, I don’t have time to think of it. I came to Washington DC to help my mother who broke her pelvis. It’s just one meeting after another! Becky

REPLY
@azkidney57

Justin, thanks for your interest. As I mentioned I am 5 months out since my Laparoscopic Nephrectomy May 2019. I had a large renal cell carcinoma. I remain cancer free at present. MRI and CT scans clear. I repeat scans in 4 months. These were the first set of scans for me. I experienced scanxiety! It was not pleasant. The cancer center where I go did not call me with results in a timely manner. It added stress. I find that after struggling with an issue I become depressed afterwards like right now. I have to repeat the cycle of scans again and again. I dislike my cancer center for their lack of responsiveness and this has been an issue from the start. I must continually aggressively advocate for myself. I care for my insulin dependent mother and so I advocate for her as well. I started my job 3 months ago. I worried I would be fired. I wasn’t learning my new job duties fast enough and my boss put me on “probation”. This past Friday my boss called me into her office and told me I have “improved” so I have been removed from probation. Starting a new job after a big cancer surgery after losing two close friends from cancer then almost being put on oral cancer medication was bad timing on my part! Lesson learned. My energy level has not returned after having a kidney removed. The surgeon told me it would take several months. Right now I feel tired, depressed and anxious but I am cancer free which is a good. It’s like I just ran a long, grueling race. I have to “recharge” and prepare for the next one. My plan is to simplify my life as much as possible where ever I can. I have noticed some of my friends have abandoned me. I haven’t been very social as of late. I will let them go! My real friends will always be there for me. I will continue to advocate for myself because I have to. I am seriously considering moving to Phoenix. I feel I would be better served at the Mayo Center there. I will need to come up for a strategy for the next MRI because it was NOT a pleasant experience. I will probably chose to take something to calm my nerves before scans. I am grateful for this site it has proved to be invaluable! Now for today my plan is to take my dog for a long walk as I attempt to “de stress” myself because I have another work week ahead of me.

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Hello @azkidney57, I am interested to know how your walk went yesterday.

Did it help to de-stress you?
Knowing the answer to this may help others who have a pet they can use for added comfort.

Have a good week.

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Hi Bob! Thanks for asking about me. I find that my dog Cinnamon, he is a 75 pound red heeler mix, is not only a great companion but he helps me take my mind off my problems. He is a great stress reliever! He seems to know when I am upset. He will usually bring me one of toys or he will come next to me and look at me. He “grounds” me and helps keep me sane! We had a great walk that day!

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@becsbuddy

@azkidney57 I’m so happy to read this posting! You have really come a long way in a short time. You go girl! I, too, just had an MRI and got an all clear on the inflammation in my brain. I was thinking of you and how one can control scanxiety. Besides the Valium, I didn’t look at the machine at all. I kept my eyes closed the entire time and just breathed slowly. Much better experience this time! Won’t even think of it for 6 months
Really, I don’t have time to think of it. I came to Washington DC to help my mother who broke her pelvis. It’s just one meeting after another! Becky

Jump to this post

Becky, I am glad your MRI was clear! It feels good to have one less thing to worry about especially when it’s a scan! I will probably take something to calm me next time I have an MRI. I will try to “relax”. I hope your mother does well! Never a dull moment! Thank you for your input! 😁

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My first post-treatment MRI is scheduled for 11-25-2019. My 30 proton beam radiation treatments and 42 oral chemo doses ended on 10-28-2019 for grade 3 anaplastic astrocytoma glioma. I'm feeling well, except for fatigue, feeling colder than normal and still not much taste. I've returned back to work, albeit part-time and am hoping to get cleared for full time at the time of my MRI and oncology visits. I'm still on anti-seizure meds and well get a prescription for 5 more doses of Temodar (chemo). I've been trying to stay busy, but the closer my scan date gets, I'm starting to really dread having to go. Any tips to combat the fear and anxiety?

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