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Swollen groin nodes

Forums General Melanoma Community Swollen groin nodes

  • Post
    alicia
    Participant
      Hi everyone I went to Vandy this past Friday to a derm that specializes in patients with multiple primaries and genetic mutations. I have had 3 primary tumors (1) >2.3mm Clark IV stage 3 SN+ (2) 0.59mm Clark II (3) >2.3mm Clark IV stage 2. All 3 have been amelanotic. This new dr says I fall into a category of the unknown genetic mutations because all mutations are not known at this time and he has never had a patient present with all their mukt primaries amelanotic. He said I make him very nervous and he’s concerned because these amelanotic tumors are hard to diagnose.

      Hi everyone I went to Vandy this past Friday to a derm that specializes in patients with multiple primaries and genetic mutations. I have had 3 primary tumors (1) >2.3mm Clark IV stage 3 SN+ (2) 0.59mm Clark II (3) >2.3mm Clark IV stage 2. All 3 have been amelanotic. This new dr says I fall into a category of the unknown genetic mutations because all mutations are not known at this time and he has never had a patient present with all their mukt primaries amelanotic. He said I make him very nervous and he’s concerned because these amelanotic tumors are hard to diagnose. Anyways he did two punch biopsies in my back near my most recent wide excision and he found two swollen lymph nodes in my right groin. I went to my oncologist who said she was concerned about progression of disease and ordered a PET scan which I got the results today from my online acess to my hospital chart. I haven’t actually spoke to my dr about these results but from what I’ve read there was no convincing evidence of metastatic disease or uptake in these nodes. My question is does this mean cut and dry these nodes should be negative or do u think my onc will want a biopsy. She said if they are hot on pET she wanted to do ex idol al biopsy but she never said what to do if it was neg on PEt. Just wondering your thoughts and has anyone had a neg PET and nodes still positive on biopsy?

      Thanks live u all

      Alicia

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        alicia
        Participant
          *excisional biopsy. I’m on my iPad which auto corrects words it doesnt recognize lol sorry
            lhaley
            Participant

              Alicia,

              There can be many reasons for enlarged nodes.  I would think it would depend on just how enlarged they are.  They might want to wait a few weeks and see you again. Could be an infection. They also might do an FNA (fine needle biopsy).

              Last year I could feel a lump in my arm. It didn't show up on the PET. I had an ultrasound and a month later they did another ultra sound. It had grown by 1mm. With my history they went ahead and did a FNA and found mel. It was then excised.

              I hope it all turns out ok!

              Linda

              alicia
              Participant
                Thanks Linda for your reply. These nodes have recently appeared around a month ago. My dr thought they felt a bit hard they are about 2 cm in size and very superficial. I just had a visit and Pet 3 mo ago and nothing was felt or seen. So I guess since this was new she thought it warranted a scan. Did they do a Pet on yours before the biopsy and what did your lump feel like? I was told if the pocket of Mel is less than a cm it won’t show up on pet. She didn’t say what she was gonna do if these nodes didn’t show up hot. Thanks again for your reply. Hope you are doing well u r such an inspiration:-)

                Much love,
                Alicia

                alicia
                Participant
                  Sorry kinda I just read where u said it didn’t show on pet but on the biopsy. Answered my own question thanks:-)
                  lhaley
                  Participant

                    Alicia,

                    I've now had 3 lymph nodes that showed up at different times with mel.  One lit up for over a year but it was so tiny they ignored it. One didn't show on the PET but the 3rd had an SUV of 2.5.  They looked into it because I was complaining that my arm hurt – it was on the ulnar nerve.   The one I'm dealing with now hurts and I can feel it but no scans yet. On the phone it was commented about just excising it. Mri of the area just 6 weeks ago!  A friend did bring up to me that maybe they didn't go down that far.

                    Mine have felt like a cyst in a jellied type of shell.  Anotherwords hard but had a soft outer part.  As they've grown while waiting for surgery they've gotten puffy.  I'm not one who likes to touch something once I've discovered it.  So it's hard to explain……  

                    By the way, your children are beautiful in your profle pic!

                    lhaley
                    Participant

                      Alicia,

                      I've now had 3 lymph nodes that showed up at different times with mel.  One lit up for over a year but it was so tiny they ignored it. One didn't show on the PET but the 3rd had an SUV of 2.5.  They looked into it because I was complaining that my arm hurt – it was on the ulnar nerve.   The one I'm dealing with now hurts and I can feel it but no scans yet. On the phone it was commented about just excising it. Mri of the area just 6 weeks ago!  A friend did bring up to me that maybe they didn't go down that far.

                      Mine have felt like a cyst in a jellied type of shell.  Anotherwords hard but had a soft outer part.  As they've grown while waiting for surgery they've gotten puffy.  I'm not one who likes to touch something once I've discovered it.  So it's hard to explain……  

                      By the way, your children are beautiful in your profle pic!

                      alicia
                      Participant
                        Sorry kinda I just read where u said it didn’t show on pet but on the biopsy. Answered my own question thanks:-)
                        alicia
                        Participant
                          Thanks Linda for your reply. These nodes have recently appeared around a month ago. My dr thought they felt a bit hard they are about 2 cm in size and very superficial. I just had a visit and Pet 3 mo ago and nothing was felt or seen. So I guess since this was new she thought it warranted a scan. Did they do a Pet on yours before the biopsy and what did your lump feel like? I was told if the pocket of Mel is less than a cm it won’t show up on pet. She didn’t say what she was gonna do if these nodes didn’t show up hot. Thanks again for your reply. Hope you are doing well u r such an inspiration:-)

                          Much love,
                          Alicia

                          lhaley
                          Participant

                            Alicia,

                            There can be many reasons for enlarged nodes.  I would think it would depend on just how enlarged they are.  They might want to wait a few weeks and see you again. Could be an infection. They also might do an FNA (fine needle biopsy).

                            Last year I could feel a lump in my arm. It didn't show up on the PET. I had an ultrasound and a month later they did another ultra sound. It had grown by 1mm. With my history they went ahead and did a FNA and found mel. It was then excised.

                            I hope it all turns out ok!

                            Linda

                          alicia
                          Participant
                            *excisional biopsy. I’m on my iPad which auto corrects words it doesnt recognize lol sorry
                            JerryfromFauq
                            Participant

                              Problem with PET scans is that they just show the sugar uptake of locations.  I have had some that found locations of melanoma, other tumors that had very limited blood supply and a zero SUV uptake and still other hot spots that were from injuries, not related to melanoma.  If CT scans show growth then I want them out.  (The zero uptake one grew fast and was mel when I had it speedily removed.)   A fineNeedle Asperation (FNA) may happen to pick up cancerous cells, but can easily miss them to.   I could readily feel mine and it was changing every few days!  Some Melanoma specialist don't get exicited if the PET doesn't show not even when we can feel one growing.  Change is the thing I worry about the most.. 

                              JerryfromFauq
                              Participant

                                Problem with PET scans is that they just show the sugar uptake of locations.  I have had some that found locations of melanoma, other tumors that had very limited blood supply and a zero SUV uptake and still other hot spots that were from injuries, not related to melanoma.  If CT scans show growth then I want them out.  (The zero uptake one grew fast and was mel when I had it speedily removed.)   A fineNeedle Asperation (FNA) may happen to pick up cancerous cells, but can easily miss them to.   I could readily feel mine and it was changing every few days!  Some Melanoma specialist don't get exicited if the PET doesn't show not even when we can feel one growing.  Change is the thing I worry about the most.. 

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