Scanxiety
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Scanxiety

› Forums › General Melanoma Community › Scanxiety

  • Post
    • March 9, 2016 at 12:27 am
    jennunicorn
    Participant

    Just got my PET/CT scan done, first one since finishing the main 4 rounds of Ipi (Yervoy). I am more anxious about the results of this scan than I was the first time. The first time I got scanned I had just finished surgery for my WLE and SLNB and was still kind of in shock and confused about what everything meant. I didn't even think twice that they'd ever find anything in it. This time feels different and I guess that's because I know so much more about melanoma than I did 4 months ago. I see my oncologist Thursday morning for results.

    Do scans still give those long standing NED folks anxiety? Does it ever get better, anxiety wise?

Viewing 14 reply threads
  • Replies
      • March 9, 2016 at 1:31 am
      jenny22
      Participant

      Hi Jenn- I am not one of those long standing NED folks, but NED nonetheless…..I had scans  last month, which were 3 months since the ones I'd had prior, after finding 2nd local recurrence….I think I was MORE anxious for these recent scans than any prior…and no idea why, since I'd just had clean scans in NOV….but i was really a wreck.

      I assume its gets better…..just not sure how long it takes.

      Good luck on Thursday ….will be looking for your news!

      Best,

      jenny

      • March 9, 2016 at 1:31 am
      jenny22
      Participant

      Hi Jenn- I am not one of those long standing NED folks, but NED nonetheless…..I had scans  last month, which were 3 months since the ones I'd had prior, after finding 2nd local recurrence….I think I was MORE anxious for these recent scans than any prior…and no idea why, since I'd just had clean scans in NOV….but i was really a wreck.

      I assume its gets better…..just not sure how long it takes.

      Good luck on Thursday ….will be looking for your news!

      Best,

      jenny

        • March 9, 2016 at 3:32 am
        Randy437
        Participant

        I've been stage IV NED for 6 years but still am anxious at scan time (every 6 months for body CT and brain MRI).  What has worked well for me is to have my scans at 7:00 AM and see my doc with results at 8:30 or 9:00.  I realize that not many facilities can schedule so closely or have at least preliminary results that quickly, but there's no downside in asking. 

        • March 9, 2016 at 3:32 am
        Randy437
        Participant

        I've been stage IV NED for 6 years but still am anxious at scan time (every 6 months for body CT and brain MRI).  What has worked well for me is to have my scans at 7:00 AM and see my doc with results at 8:30 or 9:00.  I realize that not many facilities can schedule so closely or have at least preliminary results that quickly, but there's no downside in asking. 

        • March 9, 2016 at 3:57 am
        jennunicorn
        Participant

        That is great you get to have results so quickly! Results are usually done by the next day where I am, but my onc only sees patients 2 days out of the week, so getting the scan scheduled within the shortest period of time from then until she's in the office is my best plan. I know other people have waited a week or more, I am SO glad I don't have to go through that! Thursday morning should be here soon enough..

        (congrats on your 6 year NED status!)

        • March 9, 2016 at 3:57 am
        jennunicorn
        Participant

        That is great you get to have results so quickly! Results are usually done by the next day where I am, but my onc only sees patients 2 days out of the week, so getting the scan scheduled within the shortest period of time from then until she's in the office is my best plan. I know other people have waited a week or more, I am SO glad I don't have to go through that! Thursday morning should be here soon enough..

        (congrats on your 6 year NED status!)

        • March 9, 2016 at 3:57 am
        jennunicorn
        Participant

        That is great you get to have results so quickly! Results are usually done by the next day where I am, but my onc only sees patients 2 days out of the week, so getting the scan scheduled within the shortest period of time from then until she's in the office is my best plan. I know other people have waited a week or more, I am SO glad I don't have to go through that! Thursday morning should be here soon enough..

        (congrats on your 6 year NED status!)

        • March 9, 2016 at 3:32 am
        Randy437
        Participant

        I've been stage IV NED for 6 years but still am anxious at scan time (every 6 months for body CT and brain MRI).  What has worked well for me is to have my scans at 7:00 AM and see my doc with results at 8:30 or 9:00.  I realize that not many facilities can schedule so closely or have at least preliminary results that quickly, but there's no downside in asking. 

        • March 10, 2016 at 12:43 am
        Suzi
        Participant
        Good luck tomorrow Jenn! I will have my first on next Tuesday, results on Wednesday. So glad I don’t have a lot of waiting time that’s got to be hard. I’m not looking forward to mine. Just want this all to be done with, but I know thats not the case.
        • March 10, 2016 at 12:43 am
        Suzi
        Participant
        Good luck tomorrow Jenn! I will have my first on next Tuesday, results on Wednesday. So glad I don’t have a lot of waiting time that’s got to be hard. I’m not looking forward to mine. Just want this all to be done with, but I know thats not the case.
        • March 10, 2016 at 12:58 am
        jennunicorn
        Participant

        Thank you! Good luck to you as well! The scan is pretty easy, it's the waiting afterward that's no fun. Glad you get results the next day!

        • March 10, 2016 at 12:58 am
        jennunicorn
        Participant

        Thank you! Good luck to you as well! The scan is pretty easy, it's the waiting afterward that's no fun. Glad you get results the next day!

        • March 10, 2016 at 12:58 am
        jennunicorn
        Participant

        Thank you! Good luck to you as well! The scan is pretty easy, it's the waiting afterward that's no fun. Glad you get results the next day!

        • March 10, 2016 at 12:43 am
        Suzi
        Participant
        Good luck tomorrow Jenn! I will have my first on next Tuesday, results on Wednesday. So glad I don’t have a lot of waiting time that’s got to be hard. I’m not looking forward to mine. Just want this all to be done with, but I know thats not the case.
        • March 10, 2016 at 4:22 am
        jennunicorn
        Participant

        Thanks Jenny, this is all quite the roller coaster!

        • March 10, 2016 at 4:22 am
        jennunicorn
        Participant

        Thanks Jenny, this is all quite the roller coaster!

        • March 10, 2016 at 4:22 am
        jennunicorn
        Participant

        Thanks Jenny, this is all quite the roller coaster!

      • March 9, 2016 at 1:31 am
      jenny22
      Participant

      Hi Jenn- I am not one of those long standing NED folks, but NED nonetheless…..I had scans  last month, which were 3 months since the ones I'd had prior, after finding 2nd local recurrence….I think I was MORE anxious for these recent scans than any prior…and no idea why, since I'd just had clean scans in NOV….but i was really a wreck.

      I assume its gets better…..just not sure how long it takes.

      Good luck on Thursday ….will be looking for your news!

      Best,

      jenny

      • March 9, 2016 at 6:19 am
      Kim K
      Participant

      In 3 months I will be 6 years NED from stage IV.  It really does get better over time.  Unfortunately to the point of where I started snoring during my PET/CT, a bit embarassing. 

      I guess in part I rely heavily on the fact I am NED post IL-2 for over 36 months and there was a long term study showing people like me not having a recurrance once passing that landmark.  I truely hope that with the newer immunotherapies, others can find the same solace since a very small percent fall into the durable remission post IL-2.  It was doable but very brutal.

      Best of luck,

      Kim

      • March 9, 2016 at 6:19 am
      Kim K
      Participant

      In 3 months I will be 6 years NED from stage IV.  It really does get better over time.  Unfortunately to the point of where I started snoring during my PET/CT, a bit embarassing. 

      I guess in part I rely heavily on the fact I am NED post IL-2 for over 36 months and there was a long term study showing people like me not having a recurrance once passing that landmark.  I truely hope that with the newer immunotherapies, others can find the same solace since a very small percent fall into the durable remission post IL-2.  It was doable but very brutal.

      Best of luck,

      Kim

        • March 9, 2016 at 6:06 pm
        jennunicorn
        Participant

        I would love to fall asleep in the PET/CT scan! Days that I look forward to.

        Congrats on your 6 years NED!

        • March 9, 2016 at 6:06 pm
        jennunicorn
        Participant

        I would love to fall asleep in the PET/CT scan! Days that I look forward to.

        Congrats on your 6 years NED!

        • March 9, 2016 at 6:06 pm
        jennunicorn
        Participant

        I would love to fall asleep in the PET/CT scan! Days that I look forward to.

        Congrats on your 6 years NED!

      • March 9, 2016 at 6:19 am
      Kim K
      Participant

      In 3 months I will be 6 years NED from stage IV.  It really does get better over time.  Unfortunately to the point of where I started snoring during my PET/CT, a bit embarassing. 

      I guess in part I rely heavily on the fact I am NED post IL-2 for over 36 months and there was a long term study showing people like me not having a recurrance once passing that landmark.  I truely hope that with the newer immunotherapies, others can find the same solace since a very small percent fall into the durable remission post IL-2.  It was doable but very brutal.

      Best of luck,

      Kim

      • March 9, 2016 at 5:29 pm
      Scooby123
      Participant

      Hi jennunicorn,

      It is always nervous having scans and waiting for results. I have had mine on the 28th Feb will not get my results till 24t March next appointment with my consultant. All I can say I have developed black eyes from not sleeping . 

      You have to be positive as much as possible , try and do things to take your mind off waiting lol this is me talking with dark cycles under eyes.

      wish I got results back same day like some of the guys, 

      scooby 123❤️

      • March 9, 2016 at 5:29 pm
      Scooby123
      Participant

      Hi jennunicorn,

      It is always nervous having scans and waiting for results. I have had mine on the 28th Feb will not get my results till 24t March next appointment with my consultant. All I can say I have developed black eyes from not sleeping . 

      You have to be positive as much as possible , try and do things to take your mind off waiting lol this is me talking with dark cycles under eyes.

      wish I got results back same day like some of the guys, 

      scooby 123❤️

        • March 9, 2016 at 6:04 pm
        jennunicorn
        Participant

        You are so much stronger than I think I could be since you have to wait so long! 

        Trying to keep positive thought for myself and everyone else on here too.

        • March 9, 2016 at 6:04 pm
        jennunicorn
        Participant

        You are so much stronger than I think I could be since you have to wait so long! 

        Trying to keep positive thought for myself and everyone else on here too.

        • March 9, 2016 at 6:04 pm
        jennunicorn
        Participant

        You are so much stronger than I think I could be since you have to wait so long! 

        Trying to keep positive thought for myself and everyone else on here too.

      • March 9, 2016 at 5:29 pm
      Scooby123
      Participant

      Hi jennunicorn,

      It is always nervous having scans and waiting for results. I have had mine on the 28th Feb will not get my results till 24t March next appointment with my consultant. All I can say I have developed black eyes from not sleeping . 

      You have to be positive as much as possible , try and do things to take your mind off waiting lol this is me talking with dark cycles under eyes.

      wish I got results back same day like some of the guys, 

      scooby 123❤️

      • March 9, 2016 at 9:21 pm
      keepthefaith11
      Participant
      Jenn, praying for a great scan! I can understand the fear. You guys are so incredibly strong, an inspiration really. I know I wil be a wreck when the time comes for my dad.

      Annie

      • March 9, 2016 at 9:21 pm
      keepthefaith11
      Participant
      Jenn, praying for a great scan! I can understand the fear. You guys are so incredibly strong, an inspiration really. I know I wil be a wreck when the time comes for my dad.

      Annie

        • March 10, 2016 at 12:30 am
        jennunicorn
        Participant

        Thank you Annie, hope your dad is doing ok, just saw your latest update, sounds like his doc has things under control. 

        • March 10, 2016 at 12:30 am
        jennunicorn
        Participant

        Thank you Annie, hope your dad is doing ok, just saw your latest update, sounds like his doc has things under control. 

        • March 10, 2016 at 12:56 am
        tschmith
        Participant

        I'll be thinking about you tomorrow morning and hoping for the best!  

        I'm stage IV and have been off of Keytruda with no progression since June 2015.  I think the anxiety scans and cancer, in general, causes may be one of the hardest things to deal with.  However, for me the scanxiety has slowly improved to the point where I no longer get the scans and see my doctor on the same day like I always did in the past.  

        Good luck and keep us posted!!!!

        Terrie

        • March 10, 2016 at 12:56 am
        tschmith
        Participant

        I'll be thinking about you tomorrow morning and hoping for the best!  

        I'm stage IV and have been off of Keytruda with no progression since June 2015.  I think the anxiety scans and cancer, in general, causes may be one of the hardest things to deal with.  However, for me the scanxiety has slowly improved to the point where I no longer get the scans and see my doctor on the same day like I always did in the past.  

        Good luck and keep us posted!!!!

        Terrie

        • March 10, 2016 at 12:59 am
        jennunicorn
        Participant

        Thank you!

        • March 10, 2016 at 12:59 am
        jennunicorn
        Participant

        Thank you!

        • March 10, 2016 at 12:59 am
        jennunicorn
        Participant

        Thank you!

        • March 10, 2016 at 12:56 am
        tschmith
        Participant

        I'll be thinking about you tomorrow morning and hoping for the best!  

        I'm stage IV and have been off of Keytruda with no progression since June 2015.  I think the anxiety scans and cancer, in general, causes may be one of the hardest things to deal with.  However, for me the scanxiety has slowly improved to the point where I no longer get the scans and see my doctor on the same day like I always did in the past.  

        Good luck and keep us posted!!!!

        Terrie

        • March 10, 2016 at 12:30 am
        jennunicorn
        Participant

        Thank you Annie, hope your dad is doing ok, just saw your latest update, sounds like his doc has things under control. 

      • March 9, 2016 at 9:21 pm
      keepthefaith11
      Participant
      Jenn, praying for a great scan! I can understand the fear. You guys are so incredibly strong, an inspiration really. I know I wil be a wreck when the time comes for my dad.

      Annie

      • March 10, 2016 at 4:43 pm
      casagrayson
      Participant

      Thinking about you, Jen.

       

      • March 10, 2016 at 4:43 pm
      casagrayson
      Participant

      Thinking about you, Jen.

       

      • March 10, 2016 at 4:43 pm
      casagrayson
      Participant

      Thinking about you, Jen.

       

Viewing 14 reply threads
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