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Imaging Questions

Forums General Melanoma Community Imaging Questions

  • Post
    JoshF
    Participant

      Good Morning-

      Good Morning-

      I was wondering if anyone out there could answer some questions about imaging tests. I had a PET/CT (I think CT was included…not sure) in April of 2011…No Evidence of Distant Disease. November/December of 2011 I had CT of Chest/Neck (found cyst in sinus), MRI of Brain (NED), and CT of Abdomen & Pelvis which showed a 1.5cm spot which onc thought was nothing but given melanoma history wanted an MRI which came negative as it was as he expected…a hemangioma of the liver. So has anyone run into similar situations? Also wouldn't a PET scan pick these things up? As you are all aware of how sneaky melanoma is…it really has me scared. Thanks for support.

      J

    Viewing 8 reply threads
    • Replies
        lhaley
        Participant

          Josh,

          Most PET scans include a CT.  This CT is not for diagnostic it is for placement if something is seen, then usually a follow up CT or MRI (depending on location) is then followed up.

          A PET usually also does not show anything that is very small.  The isotopes that are put in you react with sugars to show the area.   There are many false positives and many positive falses.  When they originally found 2 little lungy thingies oave a year ago one was 5mm and the other 7 mm.  They were able to go back an entire year and find when it became a speck. It is now another year and they will grow a mm and then shrink a mm. Not lighting up on the PET, showing the CT part.  They have done one diagnostic.  We grow things in our bodies all of the time so you can never be sure.

          Sounds like you are scanned much more then many, maybe because you are newly diagnosed. 

          I surely understand the fears!

          Linda

          lhaley
          Participant

            Josh,

            Most PET scans include a CT.  This CT is not for diagnostic it is for placement if something is seen, then usually a follow up CT or MRI (depending on location) is then followed up.

            A PET usually also does not show anything that is very small.  The isotopes that are put in you react with sugars to show the area.   There are many false positives and many positive falses.  When they originally found 2 little lungy thingies oave a year ago one was 5mm and the other 7 mm.  They were able to go back an entire year and find when it became a speck. It is now another year and they will grow a mm and then shrink a mm. Not lighting up on the PET, showing the CT part.  They have done one diagnostic.  We grow things in our bodies all of the time so you can never be sure.

            Sounds like you are scanned much more then many, maybe because you are newly diagnosed. 

            I surely understand the fears!

            Linda

            lhaley
            Participant

              Josh,

              Most PET scans include a CT.  This CT is not for diagnostic it is for placement if something is seen, then usually a follow up CT or MRI (depending on location) is then followed up.

              A PET usually also does not show anything that is very small.  The isotopes that are put in you react with sugars to show the area.   There are many false positives and many positive falses.  When they originally found 2 little lungy thingies oave a year ago one was 5mm and the other 7 mm.  They were able to go back an entire year and find when it became a speck. It is now another year and they will grow a mm and then shrink a mm. Not lighting up on the PET, showing the CT part.  They have done one diagnostic.  We grow things in our bodies all of the time so you can never be sure.

              Sounds like you are scanned much more then many, maybe because you are newly diagnosed. 

              I surely understand the fears!

              Linda

              washoegal
              Participant

                Josh your a little young to have these things popping up but as my Onc explained to me as we age we just grow these things.  I have a cyst in my liver and what is presumed to be a goiter in my thyroid.  Because the thyroid thing has grown very quickly between scans I have requested a needle biopsy just to be on the safe side the next time I go in for scans.  The Onc isn't worried so I am not terrible concerned. 

                The sinus cyst is most likely from allergies?  I had to have one removed when I was in my late 20's.  I think what the Oncs look for is an unusual growth pattern.  One of the problems with getting all these scans is that we know all this stuff going on in our bodies that most people are happily unaware of.  There's not much you can do about it.  Some of it is environmental, some of it is simply aging, etc.

                Mary

                Stage 3

                washoegal
                Participant

                  Josh your a little young to have these things popping up but as my Onc explained to me as we age we just grow these things.  I have a cyst in my liver and what is presumed to be a goiter in my thyroid.  Because the thyroid thing has grown very quickly between scans I have requested a needle biopsy just to be on the safe side the next time I go in for scans.  The Onc isn't worried so I am not terrible concerned. 

                  The sinus cyst is most likely from allergies?  I had to have one removed when I was in my late 20's.  I think what the Oncs look for is an unusual growth pattern.  One of the problems with getting all these scans is that we know all this stuff going on in our bodies that most people are happily unaware of.  There's not much you can do about it.  Some of it is environmental, some of it is simply aging, etc.

                  Mary

                  Stage 3

                    JoshF
                    Participant

                      Thanks both Mary & Linda. I appreciate the responses. I have heard more and more that these "sopts" show on many people and they just don't know it because they are benign and they do not have regular imaging. The anxiety that comes with this at times is overbearing. I questioned whther or not it could be the statin I have been taking for high cholesterol… let me know about results of need biopsy…I will be praying for good news!!!

                      JoshF
                      Participant

                        Thanks both Mary & Linda. I appreciate the responses. I have heard more and more that these "sopts" show on many people and they just don't know it because they are benign and they do not have regular imaging. The anxiety that comes with this at times is overbearing. I questioned whther or not it could be the statin I have been taking for high cholesterol… let me know about results of need biopsy…I will be praying for good news!!!

                        JoshF
                        Participant

                          Thanks both Mary & Linda. I appreciate the responses. I have heard more and more that these "sopts" show on many people and they just don't know it because they are benign and they do not have regular imaging. The anxiety that comes with this at times is overbearing. I questioned whther or not it could be the statin I have been taking for high cholesterol… let me know about results of need biopsy…I will be praying for good news!!!

                        washoegal
                        Participant

                          Josh your a little young to have these things popping up but as my Onc explained to me as we age we just grow these things.  I have a cyst in my liver and what is presumed to be a goiter in my thyroid.  Because the thyroid thing has grown very quickly between scans I have requested a needle biopsy just to be on the safe side the next time I go in for scans.  The Onc isn't worried so I am not terrible concerned. 

                          The sinus cyst is most likely from allergies?  I had to have one removed when I was in my late 20's.  I think what the Oncs look for is an unusual growth pattern.  One of the problems with getting all these scans is that we know all this stuff going on in our bodies that most people are happily unaware of.  There's not much you can do about it.  Some of it is environmental, some of it is simply aging, etc.

                          Mary

                          Stage 3

                          lizzykittycat
                          Participant

                            i had a pet/ct a few weeks ago before a lymphadenectomy.  my dr stated that he saw 2 things in my neck.  he said it was bilateral and couldn't be identified.  said he thinks it's nohing, but we will repeat in three months – which i think we would've been doing anyway for awhile since i'm newly diagnosed.  it was confusing to me also… has anyone ever heard of something of this nature?  my surgeon loves to tell me all the time how there's the school of thought that we over-test and scan and that so often it's just "stuff" going on.  had we not scanned and tested, it would've just "gone on" and done no harm and scared no one.  but, with the melanoma now, the book is officially open.  every "thing" going on will scare  me!

                            lizzykittycat
                            Participant

                              i had a pet/ct a few weeks ago before a lymphadenectomy.  my dr stated that he saw 2 things in my neck.  he said it was bilateral and couldn't be identified.  said he thinks it's nohing, but we will repeat in three months – which i think we would've been doing anyway for awhile since i'm newly diagnosed.  it was confusing to me also… has anyone ever heard of something of this nature?  my surgeon loves to tell me all the time how there's the school of thought that we over-test and scan and that so often it's just "stuff" going on.  had we not scanned and tested, it would've just "gone on" and done no harm and scared no one.  but, with the melanoma now, the book is officially open.  every "thing" going on will scare  me!

                                JoshF
                                Participant

                                  Lizzy-

                                  I can relate. You become so hyper-sensitive to everything and if you researched melanoma and know its so unpredictable….just makes it worse. My medical oncologist only wanted to do 6 month scans of just check and neck. My surgical oncologist said it needs to be from pelvis up and brain mri every 6 months. If we did just chest and neck…they wouldn't have seen anything in liver. I did like the fact that though my CT showed a spot on liver and they felt it was nothing they did the MRI to ensure it. Guess you can't be too cautious.

                                  JoshF
                                  Participant

                                    Lizzy-

                                    I can relate. You become so hyper-sensitive to everything and if you researched melanoma and know its so unpredictable….just makes it worse. My medical oncologist only wanted to do 6 month scans of just check and neck. My surgical oncologist said it needs to be from pelvis up and brain mri every 6 months. If we did just chest and neck…they wouldn't have seen anything in liver. I did like the fact that though my CT showed a spot on liver and they felt it was nothing they did the MRI to ensure it. Guess you can't be too cautious.

                                    Erinmay22
                                    Participant

                                      I get seen at Sloan and they do CT scans every 3 months.  As others have mentioned – they prefer the CT scan because it picks up smaller things and better pictures.  I questioned why they weren't doing a PET on me so they could see 'activiity'.  The CT scan is what found 12+ nodules in my lungs last January.  They were really tiny and if I had a PET they would have never been seen.  My doctor didn't want to do the wait 3 months and scan again to see if they go away – so he ordered a VAT's procedure to biopsy the spots.  They came back positive for melanoma.  I was glad we did the CT scan vs a PET.  I was also happy my doctor didn't want to wait because by April my scans showed cleared lungs – he would have just thought I had an infection.  Now they keep a much closer eye on me.

                                      I will say that while he was quick to scan and biopsy – just because we confirmed melanoma in the lungs – we haven't done any treatments.  I continue to have clear scans (guess my body just revved up on it's own to fight) so we don't want to mess with it…  have scans coming up again in a month…  Little nervous about these since I've had swollen lymph node in neck and pain since having the flu – guessing its just due to the flu!

                                      but you're right – it's a tricky disease and makes us totally nervous.  Some people just don't totally understand…  best of luck to you!

                                      Cheers,
                                      Erin

                                      Erinmay22
                                      Participant

                                        I get seen at Sloan and they do CT scans every 3 months.  As others have mentioned – they prefer the CT scan because it picks up smaller things and better pictures.  I questioned why they weren't doing a PET on me so they could see 'activiity'.  The CT scan is what found 12+ nodules in my lungs last January.  They were really tiny and if I had a PET they would have never been seen.  My doctor didn't want to do the wait 3 months and scan again to see if they go away – so he ordered a VAT's procedure to biopsy the spots.  They came back positive for melanoma.  I was glad we did the CT scan vs a PET.  I was also happy my doctor didn't want to wait because by April my scans showed cleared lungs – he would have just thought I had an infection.  Now they keep a much closer eye on me.

                                        I will say that while he was quick to scan and biopsy – just because we confirmed melanoma in the lungs – we haven't done any treatments.  I continue to have clear scans (guess my body just revved up on it's own to fight) so we don't want to mess with it…  have scans coming up again in a month…  Little nervous about these since I've had swollen lymph node in neck and pain since having the flu – guessing its just due to the flu!

                                        but you're right – it's a tricky disease and makes us totally nervous.  Some people just don't totally understand…  best of luck to you!

                                        Cheers,
                                        Erin

                                        Erinmay22
                                        Participant

                                          I get seen at Sloan and they do CT scans every 3 months.  As others have mentioned – they prefer the CT scan because it picks up smaller things and better pictures.  I questioned why they weren't doing a PET on me so they could see 'activiity'.  The CT scan is what found 12+ nodules in my lungs last January.  They were really tiny and if I had a PET they would have never been seen.  My doctor didn't want to do the wait 3 months and scan again to see if they go away – so he ordered a VAT's procedure to biopsy the spots.  They came back positive for melanoma.  I was glad we did the CT scan vs a PET.  I was also happy my doctor didn't want to wait because by April my scans showed cleared lungs – he would have just thought I had an infection.  Now they keep a much closer eye on me.

                                          I will say that while he was quick to scan and biopsy – just because we confirmed melanoma in the lungs – we haven't done any treatments.  I continue to have clear scans (guess my body just revved up on it's own to fight) so we don't want to mess with it…  have scans coming up again in a month…  Little nervous about these since I've had swollen lymph node in neck and pain since having the flu – guessing its just due to the flu!

                                          but you're right – it's a tricky disease and makes us totally nervous.  Some people just don't totally understand…  best of luck to you!

                                          Cheers,
                                          Erin

                                          JoshF
                                          Participant

                                            Erin-

                                            Thanks for response. You just have so much thrown at you when you're newly diagnosed that your head i swimming. I try to take comfort in the fact that they are diligent and aggressive with surveillance. Just keep praying they discover something that will halt this ugly disease. Hope you get well from the flu…take care of yourself.

                                            Best,

                                            Josh 

                                            JoshF
                                            Participant

                                              Erin-

                                              Thanks for response. You just have so much thrown at you when you're newly diagnosed that your head i swimming. I try to take comfort in the fact that they are diligent and aggressive with surveillance. Just keep praying they discover something that will halt this ugly disease. Hope you get well from the flu…take care of yourself.

                                              Best,

                                              Josh 

                                              JoshF
                                              Participant

                                                Erin-

                                                Thanks for response. You just have so much thrown at you when you're newly diagnosed that your head i swimming. I try to take comfort in the fact that they are diligent and aggressive with surveillance. Just keep praying they discover something that will halt this ugly disease. Hope you get well from the flu…take care of yourself.

                                                Best,

                                                Josh 

                                                Erinmay22
                                                Participant

                                                  Josh –

                                                  Yes you do get a lot thrown at you all at once when you are first diagnosed!  Heck I'm a year + in to it and still feel some days I get a lot thrown at me…  never really sure what is the best approach but we have to do what we're comfortable with.  I feel I'm in pretty good hands (and my current onc was the 3rd one I met). 

                                                  Luckily we have a place like this to ask questions and bounce ideas off of folks!

                                                  Erin

                                                  Erinmay22
                                                  Participant

                                                    Josh –

                                                    Yes you do get a lot thrown at you all at once when you are first diagnosed!  Heck I'm a year + in to it and still feel some days I get a lot thrown at me…  never really sure what is the best approach but we have to do what we're comfortable with.  I feel I'm in pretty good hands (and my current onc was the 3rd one I met). 

                                                    Luckily we have a place like this to ask questions and bounce ideas off of folks!

                                                    Erin

                                                    Erinmay22
                                                    Participant

                                                      Josh –

                                                      Yes you do get a lot thrown at you all at once when you are first diagnosed!  Heck I'm a year + in to it and still feel some days I get a lot thrown at me…  never really sure what is the best approach but we have to do what we're comfortable with.  I feel I'm in pretty good hands (and my current onc was the 3rd one I met). 

                                                      Luckily we have a place like this to ask questions and bounce ideas off of folks!

                                                      Erin

                                                      JoshF
                                                      Participant

                                                        Lizzy-

                                                        I can relate. You become so hyper-sensitive to everything and if you researched melanoma and know its so unpredictable….just makes it worse. My medical oncologist only wanted to do 6 month scans of just check and neck. My surgical oncologist said it needs to be from pelvis up and brain mri every 6 months. If we did just chest and neck…they wouldn't have seen anything in liver. I did like the fact that though my CT showed a spot on liver and they felt it was nothing they did the MRI to ensure it. Guess you can't be too cautious.

                                                      lizzykittycat
                                                      Participant

                                                        i had a pet/ct a few weeks ago before a lymphadenectomy.  my dr stated that he saw 2 things in my neck.  he said it was bilateral and couldn't be identified.  said he thinks it's nohing, but we will repeat in three months – which i think we would've been doing anyway for awhile since i'm newly diagnosed.  it was confusing to me also… has anyone ever heard of something of this nature?  my surgeon loves to tell me all the time how there's the school of thought that we over-test and scan and that so often it's just "stuff" going on.  had we not scanned and tested, it would've just "gone on" and done no harm and scared no one.  but, with the melanoma now, the book is officially open.  every "thing" going on will scare  me!

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