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Newly Diagnosed – Nodular Melanoma
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Newly Diagnosed – Nodular Melanoma

› Forums › Cutaneous Melanoma Community › Newly Diagnosed – Nodular Melanoma

  • Post
    • August 15, 2018 at 12:47 am
    Finn
    Participant

      Just found out a week ago that I have Melanoma and I have been trying to sort out a referral to a surgical oncologist since through my HMO. I can't stand the waiting and also the fact that the medical group within my HMO does not actually have any suitable surgeons, so I will inevitably have to appeal their referral and hope they allow me to go out of network.

      I have the pathology report from my dermatologist who did a shave biopsy of the mass. I have had this lump on my arm for probably 2-3 years and so I am quite concerned by the diagnosis. I had the lump looked at a couple years back and the dermotologist then thought it was a seborrheic keratosis. Since we thought it was benign, I left it alone. Fast forward to now, I saw another dermatologist and he also thought it was a SK, but since I had insurance we decided to have it removed and biopsied as it would be covered. 

      The pathology report shows a nodular malignant melanoma with a Breslow thickness of at least 1.1mm, a mitotic rate of 2/mm2, and staging of at least pT2a. The margins were not clean and I have to see a surgeon to have the entire mass removed as well as have sentinel lymph node biopsy.

      I am trying to be as practical as I can about everything and keep a one step at a time head on, but I am concerned as this lump has been on my arm for years misdiagnosed as a benign mass. Now I find out it is a melanoma and the most aggressive form. I worry it has already spread and the waiting for a referral is horribly frustrating when I just want the damn thing off my arm now.

      I think for the most part I just needed to vent to people who can understand my plight. 

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    • Replies
        • August 15, 2018 at 12:57 am
        Bubbles
        Participant

          Sorry for what you are dealing with, Finn.  I think you are wise to stick to the "one day/issue at a time approach"…as slow and infuriating as that can be.  Yes, you need a wide local excision and sentinel node biopsy in order to fully determine your stage.  And…until you know what that shows it is hard to even think about what to do next.  However, if you have a positive node…..I would encourage you to seek the care of a melanoma specialist (an oncologist who takes care of lots of melanoma patients) and if you would like to look ahead (though I hope it is information that you will NOT need!!!) here is a link to a primer for basic melanoma treatment that I put together a bit ago:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          I wish you my best!  Hang in there!  Celeste

            • August 15, 2018 at 2:25 am
            Kfred
            Participant

              Understand what you are going through. My Husband was just diagnosed with Nodular Melanoma. His biopsy is terrifying! He is having surgery Thursday morning. Good luck to you!

              • August 15, 2018 at 8:42 pm
              Finn
              Participant

                I understand how terrifying it all is and I wish your husband the best as he goes through surgery on Thursday morning. 

                • August 15, 2018 at 9:52 pm
                Kfred
                Participant

                  Thank you so much. It was in an existing mole that he has had for years. We never paid attention to it because it looked like all of his other moles and is located on the back of his arm close to his arm pit. It just started bothering him while he was working and that's when it hit us! It grew very large very fast. I feel stupid I did not catch it earlier. We will just take this one step at a time the best we can

                   

                  • August 15, 2018 at 8:41 pm
                  Finn
                  Participant

                    Thanks so much Celeste, for the link to all of the treatment information. I hope I won't need it, but amazing to have it all in one place. And that you for the well wishes. 

                  • August 15, 2018 at 3:13 am
                  jennunicorn
                  Participant

                    I absolutely feel you on this. I was also told the ugly fast growing thing I had on my leg was an SK. I also had an HMO system (Kaiser) at the time. It was a very stressful time in the beginning and if you need to vent or want more of my story (there is a good chunk of it in my profile here) please don't hesitate to reach out via the Contact button in my profile.

                    Sending hugs and good vibes, the beginning is the hardest.

                      • August 15, 2018 at 1:22 pm
                      Johnjk04
                      Participant

                        In 2008, started out with a 4.1 mm nodular melanoma on my chest, had 2 craniotomies, 3 Gamm Knifes and the ippi / nivo trial. Almost 6 years NED right now. Yes it is a major struggle, yes it takes a good amount of time but you can definetly beat this melanoma. God bless and good fortunes to you.

                        • August 15, 2018 at 8:49 pm
                        Finn
                        Participant

                          Thanks so much for relaying your experience John. It's making me feel better about the whole thing as I was starting to have a bit of a panic attack yesterday. I will go back to trying to take one step at a time. 

                          • August 15, 2018 at 8:47 pm
                          Finn
                          Participant

                            Thanks Jenn, it was really helpful to read through your story and see a first hand experience of everything. I will definitely reach out if I need to chat during all this – I appreciate the offer. Thank you. 

                          • August 15, 2018 at 9:10 pm
                          kathycmc
                          Participant

                            My daughter was diagnosed at 24 years old with nodular melanoma in a re-existing mole on her neck.  She is staged at 3b and is now 5 years NED.  I know this is scary but try not to look too far ahead.  Once you know what stage you are then you can explore options for treatment if any is needed.  Waiting is always horrible.  

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