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Help me understand this

Forums Cutaneous Melanoma Community Help me understand this

  • Post
    Marie1972
    Participant

      My husband was just diagnosed with Melanoma from the dermatology clinic. The initial lab report says:

      Biopsy:Malignant Melanoma, invasive. Microscopic tumor type: superficial spreading Breslow thickness:1.9mm Clack level:IV ulceration:Present focally Margin:Deep and peripheral margins involved Mitotic index:3 mitoses/mm2 vasular invasion:not dected Regression: not detected tumor infiltrating lymphocytes:Brisk Pathologic statging(pTBM);pT2b OIT/03/05/2019

       

      Am I to undertstand this is already at stage 2b? And does that mean mean that it is just 1.9mm thick or does it mean it could be more or because the peripheral margins are involved?  This biopsy was taken at a ZOOM care office on the first visit for a suspicious looking mole. The appointment was 15 minutes and The nurse practioner that saw him and did his biopsy and informed him over the phone a week later that he had melanoma, I don't think she  is very experienced. She said she hasn't been able to get a hold of the head doctor to give him a referral to seen at oncology for a wide excision and SNB. From what I understand time is of the essense with melonoma. As of this morning oncology has still not recieved any referral. I have made phone calls this morning to try to get things moving this morning for a referral.

      My husband just turned 40 and I am really trying to wrap my head around what we are facing here. I know we will know more after the SNB, but at this point am I wondering if I need to show up at this doctors office with my three children and not leave until they have put in the referral and if I am understanding this initial biopsy correctly. Thank you for your help.

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        Jamie1960
        Participant

          In the absence of regression, you have the benefit of knowing what you are dealing with depth-wise. The mitotic rate, presence of ulceration and other factors may indeed support a sentinel lymph node biopsy in conjunction with the WLE you mention. Out of an abundance of caution, you may want to do this anyway (only real difference in my experience is general versus local anesthesia, although either should take place in an ER for WLE).

          I’m not sure days matter, or even weeks, from a medical perspective; psychologically, however, I know it is a great burden.

          I’m not familiar with “Zoom”, but the name itself does not inspire confidence. Keep pressing for a referral to a surgical oncologist who specializes in melanoma.

          There are great people on this site, at all stages of the disease; your family is not alone .

            Marie1972
            Participant

              Thank you so much for your help. I am a bit overwhelmed and honestly scared. It turns out the "doctor" is just a physicians assistant and has not even attempted to get a hold of the doctor. I did speak to the doctor and he was not aware of melanoma case from his assistant and runs a separate costmotology practice. He said he will "swing" by the zoom care office today or tomorrow and make sure it gets into the system for the referral. He said his assistant usually refers the melanoma cases to him, but he hasn't heard anything about this case. And he knows how hard it is for a patient to get a hold of anyone at zoom care, that it is just a chat system online that is difficult to navigate. Honestly he didn't inspire much confidence either. Zoom care is franchise where you can run in for quick appointments the same day.

              I only saw this mole on my husband for the first time a few weeks ago,  He said it had been growing and changing over the last several  months. I knew immediately it had all the red flags (ABCDE) you are supposed to watch for as my daughter went through a scare several years ago with spitzoid nevi that was removed. It came back non malignant. I would have sent my husband in sooner had I seen his mole before now. 

              Hearing that the absence of regression tells us that is the definite depth makes me feel much better as this was just a punch biopsy sent in. Thank you so much. This is all so new to us. 

              Jamie1960
              Participant

                Punch biopsies are actually quite good due to the depth of the sample.

                Although I have begun to look a bit like a baseball, my motto is "Cut often…frequently too !"

                Have the surgeries required and stay on it like a hawk; get a dermatologist specializing in melanoma (my "Botox and acne" original dermatologist though I might have some sort of basal cell). Assuming the SLNB is negative (fingers crossed) have your husband see that person every six months for five years and the surgical oncologist at a similar interval, I schedule mine so that I am basically seeing someone every 3-4 months.

                Keep everyone posted !

                Marie1972
                Participant

                   I am so glad to hear that punch biopsies are good and that helps already so much to know to have a dermatologist that specializes in melanoma. I had made my husband an appointment with one in case the referral didn't go through. I was going to cancel because he did get a referral to the oncologist at OHSU, but it sounds like he should keep it as he will need to have follow up care with a dermatologist and the oncologist. Thank you so much for the advise and help!

                SABKLYN
                Participant

                  I concur completely with Jamie.  I Googled Zoom and it appears to be an urgent care/primary care provider.    They may be fine for some medical care, but not for melanoma.  At 1.9mm any melanoma specialist will tell you that an SLNB is highly advisable.  My melanoma was 1.2mm and I was staged at 3A after two positives nodes were found (during my SLNB in 2011).  Once that is done and depending if anything was found, your husband would likely have a PET scan.  These are all precautionary and shouldn’t be thought of as anything other than making sure the pathology is thorough and complete.  Hang in there and good luck!

                  SABKLYN
                  Participant

                    I concur completely with Jamie.  I Googled Zoom and it appears to be an urgent care/primary care provider.    They may be fine for some medical care, but not for melanoma.  At 1.9mm any melanoma specialist will tell you that an SLNB is highly advisable.  My melanoma was 1.2mm and I was staged at 3A after two positives nodes were found (during my SLNB in 2011).  Once that is done and depending if anything was found, your husband would likely have a PET scan.  These are all precautionary and shouldn’t be thought of as anything other than making sure the pathology is thorough and complete.  Hang in there and good luck!

                      Marie1972
                      Participant

                        Thank you for letting me know what to expect. I do SO much better if I know ahead of time what the next step is and especially if it precautionary rather than because things are looking bad. I am really struggling with all this emotionally because of course my mind goes to the worst case scenerio. It is something I really need to work on. We lost our little boy very suddenly to HLH and  another son in pregnancy to unknown reasons. My weakest spot is anything medical or health related with my family. So to hear this diagnoses with my husband, I have been a mess emotionally. Thank you guy so much for the support and the information. Looking up things online can make it all so scary but hearing from people that have actually been in this spot paints such a more positive picture.  I am so glad I found this board. Thank you!

                        Marie1972
                        Participant

                          Also my daughter's scare was when she 4 and had a spiz nevi on her ear. It was removed and biopsied and ended up being sent down to California to be evaluated there because it was unclear if it was malignant. In the end they decided it wasn't. Not sure if it is related to melanoma. My husband's grandfather and uncle both had melanoma we just found out.

                           

                           

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