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Newly diagnosed – seeking help

Forums General Melanoma Community Newly diagnosed – seeking help

  • Post
    manyhats
    Participant

      What a great community!  It has been helpful to read your posts.

      I was newly diagnosed from a punch biopsy with Lentigo Maligna LM (melanoma in situ) on the side of my nose in March. Prior to that my dermatologist had done two laser treatments (2011) of what had been considered a large lentigo and it kept coming back.  I asked for a biopsy.   He recommended Aldara cream.  A second and third opinion recommended surgery.  I had 2 pathologists review the slide: one said it was pre-cancer and not melanoma in situ; the other said it was melanoma in situ.  I’ve been doing some research online and interviewed several surgeons and found the information conflicting.  Meanwhile, the LM is growing and changing.  How do I choose the best surgical team since they all seem to recommend something a little different for treatment? For example:

      One says MOHS for excision with margin control to minimize tissue loss since it’s on my nose and close to my eye.  Another says to take it all out with 1 mm margin and biopsy it, then do an extra 4 mm where needed.  Another will do a staged excision with 4 mm all the way around using a radial cut technique.  Peer review literature is also conflicting on margins on the face and best practice.

      I was told to go to a “facial plastic surgeon” for the reconstruction since noses are difficult.  Of those I’ve interviewed: one says a graft from my cheek would  be done and another said I’d have a scar down to my lip in my smile line or up my forehead.   I hope to minimize the scars. 

      I am amazed at the way so many of you are handling this frightening illness and the knowledge base contained here.  Thank you for sharing your experiences and any ideas you might be able to suggest.

    Viewing 2 reply threads
    • Replies
        arthurjedi007
        Participant

          I have little experience with your stage since I started at stage 4.

          However the zelboraf caused a squamish cell on my neck. I dunno where you are located but if you want a very experienced 1000 plus melanoma patient dermatologist who can also get you into the same surgeon who did my neck then there is Dr. Cornellius at Siteman Cancer Center in Saint Louis.

           

            manyhats
            Participant

              Thanks for your reply!  I'm sorry to learn you started out at stage 4.  If I lived near Saint Louis I would definitely go there.  It is helpful to know where to go.  I will know more about my melanoma status once they have removed the entire lesion, but then I will need to have my nose reconstructed and that is also frightening for me: graft, cheek flap, etc. 

              mjcap
              Participant

                Hi manyhats, I'm interested in how your situation has progressed as I've just been diagnosed with Stage 1b melanoma on my nose and considering a number of options.  Did you decide for MOHS or wide excision – or something different? Did the plastic surgeon use a graft or cheek flap or ??, how has that progressed, and any advice you could provide?

                mjcap
                Participant

                  Hi manyhats, I'm interested in how your situation has progressed as I've just been diagnosed with Stage 1b melanoma on my nose and considering a number of options.  Did you decide for MOHS or wide excision – or something different? Did the plastic surgeon use a graft or cheek flap or ??, how has that progressed, and any advice you could provide?

                  mjcap
                  Participant

                    Hi manyhats, I'm interested in how your situation has progressed as I've just been diagnosed with Stage 1b melanoma on my nose and considering a number of options.  Did you decide for MOHS or wide excision – or something different? Did the plastic surgeon use a graft or cheek flap or ??, how has that progressed, and any advice you could provide?

                    manyhats
                    Participant

                      Thanks for your reply!  I'm sorry to learn you started out at stage 4.  If I lived near Saint Louis I would definitely go there.  It is helpful to know where to go.  I will know more about my melanoma status once they have removed the entire lesion, but then I will need to have my nose reconstructed and that is also frightening for me: graft, cheek flap, etc. 

                      manyhats
                      Participant

                        Thanks for your reply!  I'm sorry to learn you started out at stage 4.  If I lived near Saint Louis I would definitely go there.  It is helpful to know where to go.  I will know more about my melanoma status once they have removed the entire lesion, but then I will need to have my nose reconstructed and that is also frightening for me: graft, cheek flap, etc. 

                      arthurjedi007
                      Participant

                        I have little experience with your stage since I started at stage 4.

                        However the zelboraf caused a squamish cell on my neck. I dunno where you are located but if you want a very experienced 1000 plus melanoma patient dermatologist who can also get you into the same surgeon who did my neck then there is Dr. Cornellius at Siteman Cancer Center in Saint Louis.

                         

                        arthurjedi007
                        Participant

                          I have little experience with your stage since I started at stage 4.

                          However the zelboraf caused a squamish cell on my neck. I dunno where you are located but if you want a very experienced 1000 plus melanoma patient dermatologist who can also get you into the same surgeon who did my neck then there is Dr. Cornellius at Siteman Cancer Center in Saint Louis.

                           

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