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Son newly diagnosed – please help!

Forums Cutaneous Melanoma Community Son newly diagnosed – please help!

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      My adult son’s biopsy came back positive for Melanoma. The only information he was given was that it is Melanoma and that he would need to see an ENT Surgeon for lymph node biopsy, followed by a Plastic Surgeon to remove more of the ear.

      I should preface this by saying he lost his Grandma, my mom, to Melanoma that metastasized to her brain over a decade ago. I had reached out to this community at that time and the advice and experiences that I received was invaluable. He had to witness his Grandma’s decline and in home hospice.

      He had a new mole on the top of his ear for the last three years. His PCP didn’t feel it was suspicious, but referred him to a Derm. The Derm didn’t think it was suspicious, but gave him the option to biopsy it, which he accepted. The Derm cut the entire mole off. I’m not sure what, if any margins there were included in the sample.

      The Derm is out of town this week. Pathology referred him to an ENT surgeon, to remove lymph nodes for biopsy, whom he’s consulting with next week. The surgeon’s office also indicated that he would need to consult with a Plastic Surgeon to have more of his ear removed after the lymph node biopsy.

      He contacted another major hospital in our area with Melanoma specialist and was told that both of their Melanoma specialists were out in maternity leave. He gave them permission to access his records in order to have other cancer specialists review and potentially provide recommendations.

      He contacted the major Melanoma clinic in our state (WI) and was told to have the lymph node biopsy and then contact them once the results in so they can refer him to either the Dermatologists or Oncologists at the clinic.

      Is it typical to be referred to a surgeon without even being explained the results of the biopsy and the next steps, other than go to an ENT surgeon to have lymph nodes removed and then they can give you information?

      I only became involved in my mom’s care after she had several surgeries and was in an advanced stage. I recall she may have had the wrong lymph nodes biopsied which may have delayed treatment. So, the lack of information concerns me.

      Any help or guidance you can offer would be greatly appreciated!

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          Your son’s treatment plan looks normal. A sentinel lymph node biopsy and surgery to remove more tissue around where the melanoma was are often recommended. I had both. You wrote “remove lymph nodes for biopsy”. I had a CLNB in 2014 removing 14 more lymph nodes after the first lymph node was found to have melanoma. CLNBs are no longer recommended. I wish mine had not been done. It did not prevent stage 4 melanoma. Now usually only one sentinel lymph node is taken for biopsy.
            Edwin’s analysis and advice are sound and on point! Hopefully, your son’s wide excision and sentinel node biopsy will go well and the node will be negative for melanoma. If so, apart from close observation and skin checks he would then be done with melanoma and the statistical odds of his ever having to deal with it again would be very small!!! However, should his node come back positive for melanoma he would be categorized as Stage III and need to look at further evaluation and treatment options. Still, even then – there is hope. Melanoma treatments have come a long way just since 2011 when both effective targeted and immunotherapies became FDA approved! I am living proof – as a Stage III patient at diagnosis in 2003, advancing to Stage IV (also post ineffective and no longer recommended CLND, like Edwin, because that was what was done at the time) in 2010. BUT – participation in an immunotherapy trial at the time not only saved my life but I am still here and NED (having no evidence of disease) for melanoma with no further treatment today.

            Given the family history you mention, it is important that your son’s docs be aware of that and finding a melanoma specialist (should he have a positive sentinel node) would be very important. Ask more questions should you have the need. Wishing you and your son my best. Celeste

              I would suggest that he call the doctor’s office and ask for the pathology report. That will give him (and us) even more information.
                this Is my experience. I am not too far ahead of your son. first derm spotted iffy mole and sent it to biopsy. biopsy revealed it was big or deep or bad enuff to go to the next step, which was too see if had migrated to lympth nodes. So far, so good. It was at this point I entered the rather confusing world of melanoma treatment. Derm referred me to a surgeon and oncologist. He said they would call. Well neither did. At that point in time I didn’t want to by pushy. So I go with the flow and wait. Several weeks went by and I got calls from a surgeon other than the one recommend by Derm. Same thing with Oncologist. They scheduled appts which to me seemed too too far in future. In fact I ended up seeing the surgeon before the oncologist so I was a little unprepared for all that he had to say .He basically described the why’s and wherefores’ of SLNB, with the seeming assumption that I knew what he was talking about. Basically when I saw Oncolgist all we did was talk about what the surgeon was doing.
                So I can definitely say seeing an oncologist before the surgeon is probably going to be helpful to help you understand the procedures and hopefully they will explain staging , which dictates treatment.

                I might add that II was not scheduled to see surgeon for a 5 days after SLNB and WLE. I was able , however, to read all my test results on the patient portal.

                the surgeon was an Oncological Plastics Surgeon. I did not know there was such a thing. He was a little heavy on the jargon, and as you might expect with a surgeon was a little curt but he laid out the facts of the melanoma and the surgeries required.

                Fast forward, I had SLNB, and removal of the moles that was the cause of all this trouble. then the Onc came up with a prescription for Opvido monotherapy. From biopsy of mole to SLNB?WLE surgery took about a month and from surgeries to 1st infusion took about 6 weeks. No one seemed to be concerned about time lapses. No one but me that is.

                For my money is the best resources for a comprehensive understanding of melanoma.

                    It is important to recognize that if the SLNB is negative, neither Opdivo nor any other systemic treatment, would be recommended nor needed.
                    Gross Description:
                    Right Helix” and consists of a 0.7 x 0.5 x 0.2 cm tan-white skin shave with a
                    centrally located 0.4 x 0.3 cm grey, moderately demarcated lesion. The
                    resection margin is inked blue. Bisected and entirely submitted in one

                    Microscopic Description:
                    There is a dome-shaped biopsy of skin with a compound melanocytic neoplasm.
                    Melanocytes are seen focally as single cells and nests at the dermoepidermal
                    junction with areas of epidermal thinning and discrete areas of intraepidermal
                    spread. The melanocytes have amphophilic to lightly pigmented cytoplasm and
                    small round and oval to occasional enlarged, atypical nuclei. Similar
                    melanocytes are seen as crowded single cells and nests in the papillary and
                    upper reticular dermis, including scattered markedly pleomorphic forms. A few
                    superficial dermal melanocytes in mitosis are identified, as are multiple
                    junctional melanocytes in mitosis. The lesion extends to a radial biopsy
                    margin. Initial and deeper sections were examined.

                    Limited immunostains were performed to further evaluate this lesion.

                    Stain: HMB45
                    – Interpretation: Labels a few
                    junctional melanocytes; negative for dermal
                    Stain: P16
                    – Interpretation: Diffusely labels melanocytes

                    ***AMENDMENT COMMENT***

                    This case was sent in consultation to the University of California San
                    Francisco Dermatopathology and Oral Pathology Service and it was interpreted
                    by and his diagnosis is
                    as follows:

                    Melanoma of 0.9 mm in thickness, focally involving the inked peripheral

                    His microscopic description, note, and tumor synoptic are as follows:

                    “Sections show a compound proliferation of large melanocytes with finely
                    pigmented cytoplasm. There are single melanocytes and irregular nests in the
                    epidermis with focally prominent pagetoid scatter, and there are poorly
                    maturing dermal melanocytes that lack dermal circumscription and can be found
                    in mitosis. Some cells are multinucleated. A slight lymphohistiocytic
                    infiltrate with admixed melanophages is noted. Expression of p16 is

                    Given the cytologic atypicality, incomplete circumscription, poor maturation,
                    focal pagetoid scatter, and elevated dermal mitotic index that are apparent in
                    these slides, I believe this tumor represents a small diameter melanoma and
                    not a ‘melanocytic nevus of special site’. A brief synoptic is included

                    Procedure: Shave biopsy
                    Microscopic tumor type: Melanoma NOS
                    Breslow thickness: 0.9 mm
                    Ulceration: Not detected
                    Margin: Periphery involved
                    Mitotic index: 2 per square millimeter
                    Vascular invas
                    ion: Not detected
                    Regression: Not detected
                    Pathologic staging (pTNM): pT1b

                    I agree with Dr. interpretation. The changes are sufficiently
                    atypical to warrant a diagnosis of melanoma.

                      my experience part 2: When I first met with surgeon, an oncological plastic surgeon , I was new to melanoma and unsure of my condition and had no idea what questions to ask. With the Oncologist it was better. they acted more like your friendly GP. However I had 2 Oncs, so I had several different experiences to compare. The oncologist with the large private doc Onc practice, was pleasant but not extremely informative. I found I needed to come ready with questions rather than she holding my hand thru the discussion. A review of her firm’s website of 400 docs doing oncology showed there was only 1 Onc listed as melanoma specialist and she was in another city. 1 out of 400!. This doc gave me a treatment plan without any documentation so I could rececall and review.

                      I would describe this person as a Doctor of Oncology not fully invested in me or my case.

                      the 2nd Onc, with the county hospital cancer center is a lot more engaged. I told Doc 1 thanks but no thanks.

                      I tell everyone in this world , caveat emptor. there are Docs with different styles or levels of engagement.

                        Thanks for sharing the report, though it doesn’t really change what I noted earlier. The reported depth does indicate a need for SLNB (the cut-off is 0.8mm) even though having had a shave biopsy with a note that margins remain involved makes the actual depth a little unclear. There is no evidence of ulceration of the lesion, which is a VERY GOOD prognostic sign. Beyond that, you are still where I noted earlier. Get the wide local excision to attain the clear margins prescribed by a melanoma diagnosis and test the sentinel nodes. Hopefully that pathology will be reported clear of melanoma and then beyond appropriate follow-up, that will be the end of you son’s melanoma journey. Will keep my fingers crossed for you all. Celeste
                            Celeste, thank you so much for sharing your knowledge and experience. This information, along with your previous post, really helps put things into perspective. Also congratulations on being NED! You’ve had quite a journey.
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