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Scan results – is waiting this hard for everyone?

Forums General Melanoma Community Scan results – is waiting this hard for everyone?

  • Post
    MRFUser2011
    Participant

      I had a CT scan on 1/10 that showed that the lung nodules I have (one in each lung) had grown.  I have been in contact with my previous surgeon and he is very confident he can remove each nodule via VATs.  Today I get the scan results from the PET he requested prior to any surgery.  I normally schedule my scan and result appointments as close together as possible but this time, I had to take first available and have been waiting since last Thursday for these results.

      I had a CT scan on 1/10 that showed that the lung nodules I have (one in each lung) had grown.  I have been in contact with my previous surgeon and he is very confident he can remove each nodule via VATs.  Today I get the scan results from the PET he requested prior to any surgery.  I normally schedule my scan and result appointments as close together as possible but this time, I had to take first available and have been waiting since last Thursday for these results.  I have done okay with the stress and worry until I did that PET scan and now I am at a point of exhaustion from turning over the possible outcomes in my mind. Have any of you found a way to get around this awful stage from scan to results?  I do meditate and do deep breathing exercises, but it is as if I forget all my "tools" once I get into this place.  I would appreciate any suggestions anyone can offer.  

      Shari

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        Bruce in NH
        Participant

          Hi Shari,

          I think we all struggle with this issue after we have our scans, regardless of staging. After 10 years of transitioning from Stage I to Stage IIIB and now Stage IV since December, 2008, the best advice I can give you is request your oncologist to schedule your appointment with him or her immediately following your scans. I do this regularly since my one way trip tp Dartmouth Hitchcock Medical Center is a two hour drive. He brings in his laptop and together we compare my last scans with the one just taken, giving us immediate feedback on growth or non-growth of nodes. Only once in these ten years did he have to call me later and say that he missed a reading – pretty great record, I would say. I use the two hour ride home to mentally review his findings and prepare myself for what lies ahead. Some hospitals may not be this advanced to have scans available immediately for review, but I am fortunate my oncologist insists that the IT Department support him with this capability, and I love him for it.

          Bruce in NH

          Stage IV, completed round 1 "ipi" trial, awaiting more scans in two weeks for 3 month results.

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          Bruce in NH
          Participant

            Hi Shari,

            I think we all struggle with this issue after we have our scans, regardless of staging. After 10 years of transitioning from Stage I to Stage IIIB and now Stage IV since December, 2008, the best advice I can give you is request your oncologist to schedule your appointment with him or her immediately following your scans. I do this regularly since my one way trip tp Dartmouth Hitchcock Medical Center is a two hour drive. He brings in his laptop and together we compare my last scans with the one just taken, giving us immediate feedback on growth or non-growth of nodes. Only once in these ten years did he have to call me later and say that he missed a reading – pretty great record, I would say. I use the two hour ride home to mentally review his findings and prepare myself for what lies ahead. Some hospitals may not be this advanced to have scans available immediately for review, but I am fortunate my oncologist insists that the IT Department support him with this capability, and I love him for it.

            Bruce in NH

            Stage IV, completed round 1 "ipi" trial, awaiting more scans in two weeks for 3 month results.

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              MRFUser2011
              Participant

                Wow, Bruce, I have never experienced a scan episode like you describe above.  I normally have to fight the scheduling staff just to get the results within 2 days.  And my oncologist does not read the scan, just the radiologist's report.  I have never seen one of my scans.  I am beginning to understand that melanoma MUST be managed by a melanoma specialist.  I am now confirmed Stage IV as of this evening when my surgeon called to say he had seen the PET images from last week and it looks like melanoma metastasis to him.  I found out earlier today from my local oncologist (not a specialist in any one cancer) the test results but not exactly what that meant.  At least I am now getting on the right track with specialized care.  And feel pretty lucky to have gotten this far on a wing and a prayer.

                Shari

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                MRFUser2011
                Participant

                  Wow, Bruce, I have never experienced a scan episode like you describe above.  I normally have to fight the scheduling staff just to get the results within 2 days.  And my oncologist does not read the scan, just the radiologist's report.  I have never seen one of my scans.  I am beginning to understand that melanoma MUST be managed by a melanoma specialist.  I am now confirmed Stage IV as of this evening when my surgeon called to say he had seen the PET images from last week and it looks like melanoma metastasis to him.  I found out earlier today from my local oncologist (not a specialist in any one cancer) the test results but not exactly what that meant.  At least I am now getting on the right track with specialized care.  And feel pretty lucky to have gotten this far on a wing and a prayer.

                  Shari

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                lhaley
                Participant

                  Shari,

                  When I had my scans done locally it took anywhere from 24 hours to 48 hours to get the results. We recently moved and that time it took even longer.  Now I have them done in Charlotte at approx 9 in the morning and at 1:30 when I see the melanoma specialist they have already been read.  It's worth the 2 hour ride to keep down my anxiety!! 

                  My next scans are in 2 weeks to see if the growing nodule in my lung has stabalized or not so I definitely know where you are coming from!!  I already have that pit in my stomach. Can't imagine what I will be like by the 15th!!

                  How large are your nodules?

                  I hope that when you post the results everything else is clear!!

                  Linda

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                  lhaley
                  Participant

                    Shari,

                    When I had my scans done locally it took anywhere from 24 hours to 48 hours to get the results. We recently moved and that time it took even longer.  Now I have them done in Charlotte at approx 9 in the morning and at 1:30 when I see the melanoma specialist they have already been read.  It's worth the 2 hour ride to keep down my anxiety!! 

                    My next scans are in 2 weeks to see if the growing nodule in my lung has stabalized or not so I definitely know where you are coming from!!  I already have that pit in my stomach. Can't imagine what I will be like by the 15th!!

                    How large are your nodules?

                    I hope that when you post the results everything else is clear!!

                    Linda

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                      MRFUser2011
                      Participant

                        Hi Linda,

                        The right lung nodule is 2.1 cm with an SUV of 10.8 – it first appeared on scan 4/10 at 8 mm.  Left lung nodule is only .8 mm and low FDG uptake which may be in part due to the small size – it started on scan 4/10 at 6 mm, so is growing much slower.  I am now stage IV, didn't even dawn on me until I came to check the bulletin board.  I am doing much better with it now that I know conclusively.  I already have my appointment booked with the surgeon for consult, then surgery.  Reservations are made for my son and husband, etc.  So I have been preparing for the likelihood of surgery for nearly 2 weeks.  The surgeon said he wants to look at my past scans and get a better idea of what is going on with the left nodule.  I thought I would have to have VATs back to back, maybe not?  We'll see.

                        Shari

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                        MRFUser2011
                        Participant

                          Hi Linda,

                          The right lung nodule is 2.1 cm with an SUV of 10.8 – it first appeared on scan 4/10 at 8 mm.  Left lung nodule is only .8 mm and low FDG uptake which may be in part due to the small size – it started on scan 4/10 at 6 mm, so is growing much slower.  I am now stage IV, didn't even dawn on me until I came to check the bulletin board.  I am doing much better with it now that I know conclusively.  I already have my appointment booked with the surgeon for consult, then surgery.  Reservations are made for my son and husband, etc.  So I have been preparing for the likelihood of surgery for nearly 2 weeks.  The surgeon said he wants to look at my past scans and get a better idea of what is going on with the left nodule.  I thought I would have to have VATs back to back, maybe not?  We'll see.

                          Shari

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                        glewis923
                        Participant

                          Hey Shari,  To simply answer, YES.  Very anxious, worried, so on….what normal human wouldn't be?  For me, a "contrarian" ying/yang type,  I find that the more i stress and worry – seems like the results are usually a relief.  It's the times that i almost felt a "calm resolve" that i seemed to end up gettin' bad news.  Anyway, I hope your news is all good, or good as can be!   Good luck.

                          Grady.

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                          glewis923
                          Participant

                            Hey Shari,  To simply answer, YES.  Very anxious, worried, so on….what normal human wouldn't be?  For me, a "contrarian" ying/yang type,  I find that the more i stress and worry – seems like the results are usually a relief.  It's the times that i almost felt a "calm resolve" that i seemed to end up gettin' bad news.  Anyway, I hope your news is all good, or good as can be!   Good luck.

                            Grady.

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                              MRFUser2011
                              Participant

                                Thanks Grady!  Interesting what you mention about the calm resolve – the first time I was certain all was well (and I was right at the 2 year mark) was the first time anything showed on one of my scans. Go figure!  

                                Shari

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                                MRFUser2011
                                Participant

                                  Thanks Grady!  Interesting what you mention about the calm resolve – the first time I was certain all was well (and I was right at the 2 year mark) was the first time anything showed on one of my scans. Go figure!  

                                  Shari

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                                DonW
                                Participant

                                  Shari — Yes, it's normal to be freaking out about scan or pathology results. Getting speedy results does help. I once had a radiologist tell me my scan was clear right while I was still on the scanning table. So pushing in advance for quick results is one thing you could try. A simple mental trick I used was expecting the worse. I figured if the worse came true, then I was ready for it. If things came out better than 'expected', it was a welcome surprise! It's a dumb trick but it seemed to help me. Good luck.

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                                  DonW
                                  Participant

                                    Shari — Yes, it's normal to be freaking out about scan or pathology results. Getting speedy results does help. I once had a radiologist tell me my scan was clear right while I was still on the scanning table. So pushing in advance for quick results is one thing you could try. A simple mental trick I used was expecting the worse. I figured if the worse came true, then I was ready for it. If things came out better than 'expected', it was a welcome surprise! It's a dumb trick but it seemed to help me. Good luck.

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                                      LynnLuc
                                      Participant

                                        I don't know if it's a healthy trick…but I do that too

                                        ! I get scanphobia so bad it's like I am frozen in time and can't think at all…near shock! I expect the worse and when it comes back clear I have reason to celebrate and feel so relieved!

                                        If I try and stay positive and think the best and it comes back with bad news  I would be so broken. At Mayo and now at Moffitt i get the results the same day within a couple hours…they do the scans and when I get to my clinic app't I have the results! You must have some radiologist…mine always says they can't tell me….In North Dakota I had to wait 4 or 5 days and then I had to call and ask because they never thought to call me…even if it was bad…

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                                        LynnLuc
                                        Participant

                                          I don't know if it's a healthy trick…but I do that too

                                          ! I get scanphobia so bad it's like I am frozen in time and can't think at all…near shock! I expect the worse and when it comes back clear I have reason to celebrate and feel so relieved!

                                          If I try and stay positive and think the best and it comes back with bad news  I would be so broken. At Mayo and now at Moffitt i get the results the same day within a couple hours…they do the scans and when I get to my clinic app't I have the results! You must have some radiologist…mine always says they can't tell me….In North Dakota I had to wait 4 or 5 days and then I had to call and ask because they never thought to call me…even if it was bad…

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                                          MRFUser2011
                                          Participant

                                            Thanks Don & Lynn.  I am sorry to know I am in the company of others that find these scans so anxiety provoking, but reassured to know it is a "normal" response.  I am irritated that the support staff for my oncologist are apparently so clueless about the anxiety patients face that they are actually rude on occasion about the appointments I want booked so close together.  Next Monday, I am seeing the surgeon that did my original surgery at JWCI and hope to get some guidance for the future from him.  Perhaps a trip to southern California every few months would be better if it meant I got all the answers and best advice the same day.  I was terrified of this disease (rightly so, it turns out) and so chose the head in the sand approach the past 32 months.  Not anymore!  

                                            Shari

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                                            LynnLuc
                                            Participant

                                              I would not wish this disease on my worst enemy HOWEVER…if the clinic staff and doctors had the diagnosis and had to do the scans I am sure they would  appreciate the need for speed in giving patients the results…they would want to know immediately too because their life would be on the line…Moffitt and Mayo staff have got it down to a good science and I appreciate that. The waiting is enough to give you a heart attack!

                                              I had a PET scan mid FEB in 2010 and the onc said I would get the results in 2 days ( Bismark ND) I called and called…I kept telling myself if there was anything were noting or a bad change they would certainly call…it wasn't until the begiining of MARCH that I finally got thru and the nurse told me that the doc hadn't even read the results and would call me back. She finally called me back said my SUV went from 4.2 to "over 7" and that a new spot was found in my throat…!

                                              The only reason she called was to ask if I could reschedule my next appointment for 2 weeks later! I said no and I wanted my appointment earlier- I get to appointment and the nurse read the report wrong…yes the SUV was high but there was nothing in my throat…my onc wasn't concerned and didn't want to do nothing…so I went back to Mayo Clinic and they told me my Temodar stopped working more than like a month or two before and it was good I came back…I had a thoracotomy less than 2 weeks later! been working on staying NED ever since….

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                                              LynnLuc
                                              Participant

                                                I would not wish this disease on my worst enemy HOWEVER…if the clinic staff and doctors had the diagnosis and had to do the scans I am sure they would  appreciate the need for speed in giving patients the results…they would want to know immediately too because their life would be on the line…Moffitt and Mayo staff have got it down to a good science and I appreciate that. The waiting is enough to give you a heart attack!

                                                I had a PET scan mid FEB in 2010 and the onc said I would get the results in 2 days ( Bismark ND) I called and called…I kept telling myself if there was anything were noting or a bad change they would certainly call…it wasn't until the begiining of MARCH that I finally got thru and the nurse told me that the doc hadn't even read the results and would call me back. She finally called me back said my SUV went from 4.2 to "over 7" and that a new spot was found in my throat…!

                                                The only reason she called was to ask if I could reschedule my next appointment for 2 weeks later! I said no and I wanted my appointment earlier- I get to appointment and the nurse read the report wrong…yes the SUV was high but there was nothing in my throat…my onc wasn't concerned and didn't want to do nothing…so I went back to Mayo Clinic and they told me my Temodar stopped working more than like a month or two before and it was good I came back…I had a thoracotomy less than 2 weeks later! been working on staying NED ever since….

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                                                MRFUser2011
                                                Participant

                                                  Thanks Don & Lynn.  I am sorry to know I am in the company of others that find these scans so anxiety provoking, but reassured to know it is a "normal" response.  I am irritated that the support staff for my oncologist are apparently so clueless about the anxiety patients face that they are actually rude on occasion about the appointments I want booked so close together.  Next Monday, I am seeing the surgeon that did my original surgery at JWCI and hope to get some guidance for the future from him.  Perhaps a trip to southern California every few months would be better if it meant I got all the answers and best advice the same day.  I was terrified of this disease (rightly so, it turns out) and so chose the head in the sand approach the past 32 months.  Not anymore!  

                                                  Shari

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