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CT results questionable after PET

Forums General Melanoma Community CT results questionable after PET

  • Post
    mom3girlsFL
    Participant

      So I had a PET 2 wks ago and it lit up in a node (small SUV, 2.5) in the poplitieal fossa (behind the knee) in the same leg my radical groin dissection was done last year.  Onc sends me to have a CT to "double check"…

      Results of CT were normal except for "non-specific prominent enlarged node popliteal fossa".  This was left on my answering machine from my onc's assistant as my onc is on vacation till monday.  The assistant said she will put my chart on doc's desk for monday morning.

      So I had a PET 2 wks ago and it lit up in a node (small SUV, 2.5) in the poplitieal fossa (behind the knee) in the same leg my radical groin dissection was done last year.  Onc sends me to have a CT to "double check"…

      Results of CT were normal except for "non-specific prominent enlarged node popliteal fossa".  This was left on my answering machine from my onc's assistant as my onc is on vacation till monday.  The assistant said she will put my chart on doc's desk for monday morning.

      So…of course my gut says it's mel…BUT, my optimistic, treat everything with a little humour side, is telling me maybe it is not…

      I know a biopsy is probably the next course of action?  My hubby says why are they messing around with this – why did they CT? the PET showed it, why didn't we biopsy then? and why are we biopsing (sp?)? just take out all the nodes!

      Advice? Comments? Anyone?

      🙁 Laurie

    Viewing 11 reply threads
    • Replies
        dian in spokane
        Participant

          Well, SUV of 2.5 is pretty low. They did the CT because it gives different info than the PET, and PET's are kind of notorius for lighting up a lot of things, scar tissue, infection, any inflammation at all can light up a PET.

          So they might want to watch this for a couple of weeks and then repeat a CT, or even an ultrasound.

          Is this something you can feel?

            mom3girlsFL
            Participant

              Yes dian, I can feel a small lump.  Still holding on to the idea of infection or inflammation though…Thanks for your thoughts!  Hoping they will do a needle biopsy this next week when my doc is back to rule out mel.

              mom3girlsFL
              Participant

                Yes dian, I can feel a small lump.  Still holding on to the idea of infection or inflammation though…Thanks for your thoughts!  Hoping they will do a needle biopsy this next week when my doc is back to rule out mel.

                mom3girlsFL
                Participant

                  Yes dian, I can feel a small lump.  Still holding on to the idea of infection or inflammation though…Thanks for your thoughts!  Hoping they will do a needle biopsy this next week when my doc is back to rule out mel.

                dian in spokane
                Participant

                  Well, SUV of 2.5 is pretty low. They did the CT because it gives different info than the PET, and PET's are kind of notorius for lighting up a lot of things, scar tissue, infection, any inflammation at all can light up a PET.

                  So they might want to watch this for a couple of weeks and then repeat a CT, or even an ultrasound.

                  Is this something you can feel?

                  dian in spokane
                  Participant

                    Well, SUV of 2.5 is pretty low. They did the CT because it gives different info than the PET, and PET's are kind of notorius for lighting up a lot of things, scar tissue, infection, any inflammation at all can light up a PET.

                    So they might want to watch this for a couple of weeks and then repeat a CT, or even an ultrasound.

                    Is this something you can feel?

                    Charlie S
                    Participant

                      Low suv's on a PET such as your 2.5 are hardly conclusive.  A far more economical and revealing  followup would have been an ultrasound rather than a CT…..a lower option would have been a FNA……….Fine Needle Aspiration……………..a/k/a needle biopsy.

                      That you "know" a biopsy" is the best course given your results is really not  all that good of a decision.

                      Sure, follow your gut, but there is no reason to do invasive proceedures  based alone on a 2.5 suv uptake.  A aggravated mosquito bite can give a 2.5 on a PET.

                      I'm not diminishing your concerns, but would kindly suggest that you find a balance that is based upon science and not (no pun intended), knee jerk reactions.

                      Cheers,

                      Charlie S

                        mom3girlsFL
                        Participant

                          Hey Charlie!  Thanks for your input…I'm actually hoping for a needle biopsy to rule out mel.  I feel that would be the easiest and least invasive step for now.  I will find out more this next week I guess.  Kind of odd that mel would go to groin then travel "down" to knee???  All that leads me to think it's not mel…who knows?  Anyway, take care and thanks!

                          mom3girlsFL
                          Participant

                            Hey Charlie!  Thanks for your input…I'm actually hoping for a needle biopsy to rule out mel.  I feel that would be the easiest and least invasive step for now.  I will find out more this next week I guess.  Kind of odd that mel would go to groin then travel "down" to knee???  All that leads me to think it's not mel…who knows?  Anyway, take care and thanks!

                            mom3girlsFL
                            Participant

                              Hey Charlie!  Thanks for your input…I'm actually hoping for a needle biopsy to rule out mel.  I feel that would be the easiest and least invasive step for now.  I will find out more this next week I guess.  Kind of odd that mel would go to groin then travel "down" to knee???  All that leads me to think it's not mel…who knows?  Anyway, take care and thanks!

                            Charlie S
                            Participant

                              Low suv's on a PET such as your 2.5 are hardly conclusive.  A far more economical and revealing  followup would have been an ultrasound rather than a CT…..a lower option would have been a FNA……….Fine Needle Aspiration……………..a/k/a needle biopsy.

                              That you "know" a biopsy" is the best course given your results is really not  all that good of a decision.

                              Sure, follow your gut, but there is no reason to do invasive proceedures  based alone on a 2.5 suv uptake.  A aggravated mosquito bite can give a 2.5 on a PET.

                              I'm not diminishing your concerns, but would kindly suggest that you find a balance that is based upon science and not (no pun intended), knee jerk reactions.

                              Cheers,

                              Charlie S

                              Charlie S
                              Participant

                                Low suv's on a PET such as your 2.5 are hardly conclusive.  A far more economical and revealing  followup would have been an ultrasound rather than a CT…..a lower option would have been a FNA……….Fine Needle Aspiration……………..a/k/a needle biopsy.

                                That you "know" a biopsy" is the best course given your results is really not  all that good of a decision.

                                Sure, follow your gut, but there is no reason to do invasive proceedures  based alone on a 2.5 suv uptake.  A aggravated mosquito bite can give a 2.5 on a PET.

                                I'm not diminishing your concerns, but would kindly suggest that you find a balance that is based upon science and not (no pun intended), knee jerk reactions.

                                Cheers,

                                Charlie S

                                JerryfromFauq
                                Participant

                                  Laurie, I will repeat something i have often said, PET scans do not automatically pick out tumors.  As Linda pointed out they show many spots, the problem is "What do the spots mean?"   all a PET scan shows is locations were glucose has gathered.  This is the reason that PET scans are famous for both false positives and false negatives.  Since Tumors tend to absorb glucose, the lighted spots are something to check out as a posible trouble location. One way they are checked out is by CT's which give a much more accurate indication of size and therefore by repeated CT's a more definite indication of growth or laack thereof.  I have had many more false positives on PETs than I have had tumors.  I have also had several tumors that I found and could tell that they were changing size (growing) that the PET scan did not identify.  When I discussed them with my surgical specialist oncologist, he cut out the ones I wanted him to.and left the ones where I knew I had previous injuries.  None of the previous injury spots has ever changed on the CT scans.  Of the spots I said were changing, the ones I suspected of being melanoma were.  The one location that I did not think was melanoma, but was growing fast was removed for me and was a fatty growth, not a melanoma.

                                    Is the back of your knee sore or does it have a changing lump in it?  Have you ever hurt that knee? They may want to do a Fine Needle Aspiration (FNA biopsy) of the node to see what they can find, especially if it is changing.  Since you have aalready had the melanoma show up much higher it would be less likely for the popliteal nodes to now be receiving the melanoma cells.  Not impossible , but in most caes the disease goes to the groin nodes, not the knee nodes.  Operations in this area area quite delicate and need a specialist familiar with operating in this area.

                                  Here are a couple of URLs to check out.

                                  http://en.wikipedia.org/wiki/Popliteal_lymph_nodes

                                  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1784092/

                                     You will note in this article that it is recommended that someone that is very familiar with the knowledge of anatomy and surgical technique about popliteal lymphadenectomy are required to make preservation of structures that if injured, can produce a permanent, considerable disability.

                                  JerryfromFauq
                                  Participant

                                    Laurie, I will repeat something i have often said, PET scans do not automatically pick out tumors.  As Linda pointed out they show many spots, the problem is "What do the spots mean?"   all a PET scan shows is locations were glucose has gathered.  This is the reason that PET scans are famous for both false positives and false negatives.  Since Tumors tend to absorb glucose, the lighted spots are something to check out as a posible trouble location. One way they are checked out is by CT's which give a much more accurate indication of size and therefore by repeated CT's a more definite indication of growth or laack thereof.  I have had many more false positives on PETs than I have had tumors.  I have also had several tumors that I found and could tell that they were changing size (growing) that the PET scan did not identify.  When I discussed them with my surgical specialist oncologist, he cut out the ones I wanted him to.and left the ones where I knew I had previous injuries.  None of the previous injury spots has ever changed on the CT scans.  Of the spots I said were changing, the ones I suspected of being melanoma were.  The one location that I did not think was melanoma, but was growing fast was removed for me and was a fatty growth, not a melanoma.

                                      Is the back of your knee sore or does it have a changing lump in it?  Have you ever hurt that knee? They may want to do a Fine Needle Aspiration (FNA biopsy) of the node to see what they can find, especially if it is changing.  Since you have aalready had the melanoma show up much higher it would be less likely for the popliteal nodes to now be receiving the melanoma cells.  Not impossible , but in most caes the disease goes to the groin nodes, not the knee nodes.  Operations in this area area quite delicate and need a specialist familiar with operating in this area.

                                    Here are a couple of URLs to check out.

                                    http://en.wikipedia.org/wiki/Popliteal_lymph_nodes

                                    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1784092/

                                       You will note in this article that it is recommended that someone that is very familiar with the knowledge of anatomy and surgical technique about popliteal lymphadenectomy are required to make preservation of structures that if injured, can produce a permanent, considerable disability.

                                      mom3girlsFL
                                      Participant

                                        Hi Jerry, thanks for your input and the links.  Yeesh, hope it's not mel – that surgery would, um, SU#!!!K to say the least!  My knee is not sore, nor does it hurt to "feel around" there.  Just odd that it would go to groin then "down" to knee?  All that points to is NOT mel but need to be sure.  Hoping for a needle biopsy this week to rule it out.  Take Care.

                                        mom3girlsFL
                                        Participant

                                          Hi Jerry, thanks for your input and the links.  Yeesh, hope it's not mel – that surgery would, um, SU#!!!K to say the least!  My knee is not sore, nor does it hurt to "feel around" there.  Just odd that it would go to groin then "down" to knee?  All that points to is NOT mel but need to be sure.  Hoping for a needle biopsy this week to rule it out.  Take Care.

                                          mom3girlsFL
                                          Participant

                                            Hi Jerry, thanks for your input and the links.  Yeesh, hope it's not mel – that surgery would, um, SU#!!!K to say the least!  My knee is not sore, nor does it hurt to "feel around" there.  Just odd that it would go to groin then "down" to knee?  All that points to is NOT mel but need to be sure.  Hoping for a needle biopsy this week to rule it out.  Take Care.

                                          JerryfromFauq
                                          Participant

                                            Laurie, I will repeat something i have often said, PET scans do not automatically pick out tumors.  As Linda pointed out they show many spots, the problem is "What do the spots mean?"   all a PET scan shows is locations were glucose has gathered.  This is the reason that PET scans are famous for both false positives and false negatives.  Since Tumors tend to absorb glucose, the lighted spots are something to check out as a posible trouble location. One way they are checked out is by CT's which give a much more accurate indication of size and therefore by repeated CT's a more definite indication of growth or laack thereof.  I have had many more false positives on PETs than I have had tumors.  I have also had several tumors that I found and could tell that they were changing size (growing) that the PET scan did not identify.  When I discussed them with my surgical specialist oncologist, he cut out the ones I wanted him to.and left the ones where I knew I had previous injuries.  None of the previous injury spots has ever changed on the CT scans.  Of the spots I said were changing, the ones I suspected of being melanoma were.  The one location that I did not think was melanoma, but was growing fast was removed for me and was a fatty growth, not a melanoma.

                                              Is the back of your knee sore or does it have a changing lump in it?  Have you ever hurt that knee? They may want to do a Fine Needle Aspiration (FNA biopsy) of the node to see what they can find, especially if it is changing.  Since you have aalready had the melanoma show up much higher it would be less likely for the popliteal nodes to now be receiving the melanoma cells.  Not impossible , but in most caes the disease goes to the groin nodes, not the knee nodes.  Operations in this area area quite delicate and need a specialist familiar with operating in this area.

                                            Here are a couple of URLs to check out.

                                            http://en.wikipedia.org/wiki/Popliteal_lymph_nodes

                                            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1784092/

                                               You will note in this article that it is recommended that someone that is very familiar with the knowledge of anatomy and surgical technique about popliteal lymphadenectomy are required to make preservation of structures that if injured, can produce a permanent, considerable disability.

                                            djpayn
                                            Participant

                                              hi laurie. 

                                              when i was dignosed in 2008 – my mel was on my right ankle. we did the WLE and SNB and when the groin nodes tested positive, we scheduled the LND. my LND was scheduled for a monday, we did a PET on the friday before, just so they could get a solid view of the nodes that were lighting up.

                                              Sunday afternoon my surgeon called me and told me that he was reviewing the results of my PET and told me that the popliteal fossa nodes were lit up as well and would i give him permission to remove them the following day. i did.

                                               

                                              I was told that it is rare that mel travels to these nodes but that its not unheard of. further testing proved that the nodes were extracapsulated (exploding) with mel – so removing them was the best thing that could have been done.

                                               

                                              if i was you and the option is there to remove them popliteal nodes, i say remove them…. but this also increases your chance of lymphadema – but i would rather have LE than mel in me!!

                                              Please let me know if you have any questions… i would be happy to answer them.

                                               

                                              djpayn (dawna)

                                                mom3girlsFL
                                                Participant

                                                  Hi Dawna, thanks so much for your input.  In case it turns out to be mel I will certainly post a note to talk further!  As I told the other responders, I'm hoping for a needle biopsy this week to rule it out.  Do you think it would be odd for it to have gone to my groin and then, a YEAR later, to show behind the knee?  I don't know that I've ever heard of it traveling down.  The original mel was just below the knee on the interior side of my left leg back in 2003.  7 years later, yes, 7 years it shows up in the groin.  So nothing really shocks me anymore.

                                                  Anyway, trying to remain optimistic and hoping for a good, clean infection LOL!!!  Thanks again!

                                                  mom3girlsFL
                                                  Participant

                                                    Hi Dawna, thanks so much for your input.  In case it turns out to be mel I will certainly post a note to talk further!  As I told the other responders, I'm hoping for a needle biopsy this week to rule it out.  Do you think it would be odd for it to have gone to my groin and then, a YEAR later, to show behind the knee?  I don't know that I've ever heard of it traveling down.  The original mel was just below the knee on the interior side of my left leg back in 2003.  7 years later, yes, 7 years it shows up in the groin.  So nothing really shocks me anymore.

                                                    Anyway, trying to remain optimistic and hoping for a good, clean infection LOL!!!  Thanks again!

                                                    mom3girlsFL
                                                    Participant

                                                      Hi Dawna, thanks so much for your input.  In case it turns out to be mel I will certainly post a note to talk further!  As I told the other responders, I'm hoping for a needle biopsy this week to rule it out.  Do you think it would be odd for it to have gone to my groin and then, a YEAR later, to show behind the knee?  I don't know that I've ever heard of it traveling down.  The original mel was just below the knee on the interior side of my left leg back in 2003.  7 years later, yes, 7 years it shows up in the groin.  So nothing really shocks me anymore.

                                                      Anyway, trying to remain optimistic and hoping for a good, clean infection LOL!!!  Thanks again!

                                                    djpayn
                                                    Participant

                                                      hi laurie. 

                                                      when i was dignosed in 2008 – my mel was on my right ankle. we did the WLE and SNB and when the groin nodes tested positive, we scheduled the LND. my LND was scheduled for a monday, we did a PET on the friday before, just so they could get a solid view of the nodes that were lighting up.

                                                      Sunday afternoon my surgeon called me and told me that he was reviewing the results of my PET and told me that the popliteal fossa nodes were lit up as well and would i give him permission to remove them the following day. i did.

                                                       

                                                      I was told that it is rare that mel travels to these nodes but that its not unheard of. further testing proved that the nodes were extracapsulated (exploding) with mel – so removing them was the best thing that could have been done.

                                                       

                                                      if i was you and the option is there to remove them popliteal nodes, i say remove them…. but this also increases your chance of lymphadema – but i would rather have LE than mel in me!!

                                                      Please let me know if you have any questions… i would be happy to answer them.

                                                       

                                                      djpayn (dawna)

                                                      djpayn
                                                      Participant

                                                        hi laurie. 

                                                        when i was dignosed in 2008 – my mel was on my right ankle. we did the WLE and SNB and when the groin nodes tested positive, we scheduled the LND. my LND was scheduled for a monday, we did a PET on the friday before, just so they could get a solid view of the nodes that were lighting up.

                                                        Sunday afternoon my surgeon called me and told me that he was reviewing the results of my PET and told me that the popliteal fossa nodes were lit up as well and would i give him permission to remove them the following day. i did.

                                                         

                                                        I was told that it is rare that mel travels to these nodes but that its not unheard of. further testing proved that the nodes were extracapsulated (exploding) with mel – so removing them was the best thing that could have been done.

                                                         

                                                        if i was you and the option is there to remove them popliteal nodes, i say remove them…. but this also increases your chance of lymphadema – but i would rather have LE than mel in me!!

                                                        Please let me know if you have any questions… i would be happy to answer them.

                                                         

                                                        djpayn (dawna)

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