Just Diagnosed

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  • Post
    ahren_b
    Participant

      Hi All,

      I'm so happy to have found this resource, I've felt a little lost since receiving my diagnosis last week. I went in a year ago for a small patch of discolored skin on my neck below my right ear and was told that it was nothing to worry about (no tests were done,) a year later I have a melanoma that is "At least 3.5mm deep" the at least part is that the dermatologist scraped it off not really knowing what it was and sent it off for biopsy. The pathology report said the melanoma went through the entire sample so now I'm having surgery done to hopefully remove the rest while testing the sentinel nodes for any spread. My doctors are sharing very little information with me and although I've asked, no resources or support suggestions either. I feel like I'm twising in the wind, I don't even kow what stage it is. I keep thinking "this little tiny mole is causing all this grief? How is this possible?" My labs have all come back normal, and my surgery is scheduled for Friday; I'm told it'll be a week or so before I hear back on the node biopsy. I'm doing my best to keep it together for my family and friends and 90% of the time I'm succesful. They're all being great … but none of us really know what to expect out of this situation. Any advice for the surgery or what to expect afterwards would be greatly appreciated.

      ~Ahren

       

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    • Replies
        Janner
        Participant

          Because your sample had melanoma the entire way thru, there is no real way to stage you.  Staging will happen after the results of the sentinel lymph node biopsy and where the rest of the original lesion is analyzed.  Until that is done, you are basically in limbo.  The doctors need this info as well before they can really give you any good information.  I doubt the docs are being intentionally secretive or elusive, they just don't have enough information at this point to talk to you in any meaningful way.  Waiting sucks, we've all been there.  But until you have that basic information, no one can really be of any help. 

          Janner
          Participant

            Because your sample had melanoma the entire way thru, there is no real way to stage you.  Staging will happen after the results of the sentinel lymph node biopsy and where the rest of the original lesion is analyzed.  Until that is done, you are basically in limbo.  The doctors need this info as well before they can really give you any good information.  I doubt the docs are being intentionally secretive or elusive, they just don't have enough information at this point to talk to you in any meaningful way.  Waiting sucks, we've all been there.  But until you have that basic information, no one can really be of any help. 

            Janner
            Participant

              Because your sample had melanoma the entire way thru, there is no real way to stage you.  Staging will happen after the results of the sentinel lymph node biopsy and where the rest of the original lesion is analyzed.  Until that is done, you are basically in limbo.  The doctors need this info as well before they can really give you any good information.  I doubt the docs are being intentionally secretive or elusive, they just don't have enough information at this point to talk to you in any meaningful way.  Waiting sucks, we've all been there.  But until you have that basic information, no one can really be of any help. 

              kathycmc
              Participant

                My daughter had a mole on her right neck as well.  I guess the thing to know about the surgery, if they haven't already told you, is that the scar will be bigger than you think.  They have to make it long so that they can get the margins they need and still be able to pull the skin together again without puckering.  You may have a second scar where they take the lymph node(s) from.  The recovery should be fairly easy from this surgery as everything is pretty close to the surface.  They will biopsy the lymph node(s) and the results will determine the stage.  Once they know the stage then any further surgery or treatment will be discussed at that time.  My main recommendation is that if there is anything more to do (and I pray that there isn't) that you seek out specialists.  An ENT who specializes in oncology if you need further surgery and a melanoma oncologist if you need further treatment.  It really makes a difference because of their knowledge and skill but also because they are better equiped to walk with you through this experience.  My daughter's melanoma was nodular and deep like yours.  She ended up doing a second surgery for lymph node dissection and then received 3 rounds of biochemotherapy but has been NED for over 2 years (since her last surgery).  It is great that you have the support of your family and friends.  I will say this although it is near impossible – don't waste your time worrying.  Assume the best until you learn differently and stay off the internet, except for this forum of course.  Lots of good and current information here.  God bless you and hope to hear that your surgery went well and you are NED.  

                kathycmc
                Participant

                  My daughter had a mole on her right neck as well.  I guess the thing to know about the surgery, if they haven't already told you, is that the scar will be bigger than you think.  They have to make it long so that they can get the margins they need and still be able to pull the skin together again without puckering.  You may have a second scar where they take the lymph node(s) from.  The recovery should be fairly easy from this surgery as everything is pretty close to the surface.  They will biopsy the lymph node(s) and the results will determine the stage.  Once they know the stage then any further surgery or treatment will be discussed at that time.  My main recommendation is that if there is anything more to do (and I pray that there isn't) that you seek out specialists.  An ENT who specializes in oncology if you need further surgery and a melanoma oncologist if you need further treatment.  It really makes a difference because of their knowledge and skill but also because they are better equiped to walk with you through this experience.  My daughter's melanoma was nodular and deep like yours.  She ended up doing a second surgery for lymph node dissection and then received 3 rounds of biochemotherapy but has been NED for over 2 years (since her last surgery).  It is great that you have the support of your family and friends.  I will say this although it is near impossible – don't waste your time worrying.  Assume the best until you learn differently and stay off the internet, except for this forum of course.  Lots of good and current information here.  God bless you and hope to hear that your surgery went well and you are NED.  

                  kathycmc
                  Participant

                    My daughter had a mole on her right neck as well.  I guess the thing to know about the surgery, if they haven't already told you, is that the scar will be bigger than you think.  They have to make it long so that they can get the margins they need and still be able to pull the skin together again without puckering.  You may have a second scar where they take the lymph node(s) from.  The recovery should be fairly easy from this surgery as everything is pretty close to the surface.  They will biopsy the lymph node(s) and the results will determine the stage.  Once they know the stage then any further surgery or treatment will be discussed at that time.  My main recommendation is that if there is anything more to do (and I pray that there isn't) that you seek out specialists.  An ENT who specializes in oncology if you need further surgery and a melanoma oncologist if you need further treatment.  It really makes a difference because of their knowledge and skill but also because they are better equiped to walk with you through this experience.  My daughter's melanoma was nodular and deep like yours.  She ended up doing a second surgery for lymph node dissection and then received 3 rounds of biochemotherapy but has been NED for over 2 years (since her last surgery).  It is great that you have the support of your family and friends.  I will say this although it is near impossible – don't waste your time worrying.  Assume the best until you learn differently and stay off the internet, except for this forum of course.  Lots of good and current information here.  God bless you and hope to hear that your surgery went well and you are NED.  

                    A
                    Participant

                      I am very sorry about your diagnosis.
                      How this "discolored patch" lokked like? Thanks.

                        ahren_b
                        Participant

                          It was flat and a brownish color, it looked to me like a birth mark but I've never had a birth mark which is why I went in to have it checked out, the area was a little larger than the size of a dime.

                          ahren_b
                          Participant

                            It was flat and a brownish color, it looked to me like a birth mark but I've never had a birth mark which is why I went in to have it checked out, the area was a little larger than the size of a dime.

                            ahren_b
                            Participant

                              It was flat and a brownish color, it looked to me like a birth mark but I've never had a birth mark which is why I went in to have it checked out, the area was a little larger than the size of a dime.

                            A
                            Participant

                              I am very sorry about your diagnosis.
                              How this "discolored patch" lokked like? Thanks.

                              A
                              Participant

                                I am very sorry about your diagnosis.
                                How this "discolored patch" lokked like? Thanks.

                                ahren_b
                                Participant

                                  Thank you for all of the replies, hearing from others really helps!  I'll be sure to post more info once the surgery and biopsy comes back.

                                  ahren_b
                                  Participant

                                    Thank you for all of the replies, hearing from others really helps!  I'll be sure to post more info once the surgery and biopsy comes back.

                                    ahren_b
                                    Participant

                                      Thank you for all of the replies, hearing from others really helps!  I'll be sure to post more info once the surgery and biopsy comes back.

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