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kellylizzz

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      kellylizzz
      Participant
        I dont remember if I updated anywhere but I did get the SNLB done and thankfully it had not metastasized. They were able to cut it out and graft skin from my thigh to cover the big ole wound. It definitely was melanoma though, my body just does things weirdly I spose lol. My dad ended up having one behind his left ear in 2021 too, so I guess our genes like to make melanomas on the head. Half sister had it on her neck in her mid 30s. Four years out now and so far so good. Skin checks every six months forever, of course.

        Thank y’all for your wisdom!

        kellylizzz
        Participant
          I did end up getting genetic testing done and y’all knew it, I do have the CDKN2A gene mutation from my dad !
          kellylizzz
          Participant
            A very late reply but thank y’all for your support! My fiance at the time husband now was an angel and did all of the head woundcare and most of the leg woundcare for me, everything healed really really well. It was hell to exist for two weeks after having been essentially medically scalped on half my head, had to wear a bandage 24/7 for those two weeks and couldn’t shower really. Then they did the skin graft surgery which went largely super well, besides how I woke up. For some reason my silly groggy brain thought “hey my leg is itchy, let’s reach under the bandages and give it a good scratch” so that’s what I did, and I woke up to the nurses yelling “NO NO NO!” and grabbing my hand lol. Thankfully I didn’t manage to do much damage and it healed fine. Once the skin graft was on, I had to wear a pressure bandage for like two weeks I think? And also couldn’t really shower. It was an icky time lol. Lots of sponge baths. With all the pain one of the most annoying things was the whole not being able to shower thing.

            The donor site on my leg was definitely way more painful than my scalp situation where the graft covered was. We used so much xiroform, it was a lifesaver. The skin graft looked super weird for a while but now it looks like normal skin, just smoother.

            Also found out I have a genetic predisposition to melanoma due to the CDK2NA gene, from my dad’s side. He actually had melanoma behind his left ear just like me in 2021! It was removed quickly thankfully, no need for a graft for him since it was caught so early.

            Found out my half sister also had melanoma on her neck, so it seems our family likes to put melanoma on our heads for some reason.

            Anyway, I was super lucky to have my husband with me. I would have had to go to a rehab facility or had home nurses come to do my wound care for me since I couldn’t even see the part of my head it was on. With his help, everything healed better than expected. My hair covers the graft so it’s not even visible unless I have my hair up, then it looks like a permanent undercut. It’s wild to now have a freckle on my scalp that used to be on my thigh lol. But now it’s been 4 years and so far no new melanomas have popped up. I’ll have 6 monthly skin checks for the rest of my life of course.

            Anyway thanks for y’alls support this forum was very helpful for me when I was going through it.

            kellylizzz
            Participant

              Wishing you good luck ! 

              kellylizzz
              Participant

                Skin, left scalp, excision: Malignant melanoma, see below and comment.

                     Histologic Type: Amelanotic melanoma.
                     Maximum Tumor Thickness: 1.5 mm.
                     Anatomic Level: Clark level IV.
                     Ulceration: Present.
                     Peripheral Margins: Involved my invasive melanoma, see comment.
                     Deep Margin: Uninvolved by invasive melanoma.
                     Mitotic Index: Approximately 1/mm2.
                     Microsatellitosis: Not identified.
                     Lymph-Vascular Invasion: Not identified.
                     Perineural Invasion: Not identified.
                     Tumor Infiltrating Lymphocytes: Not identified.
                     Tumor Regression: Present, involving <75% of lesion.
                     Pathologic Stage: At least T2b.

                CLINICAL INFORMATION:
                Specimen(s): Excision, left scalp, melanoma, check margins, stitch at 12
                o'clock. ICD Code(s): D03.4.

                 

                 

                 

                Post Re-Excision: 

                FINAL DIAGNOSIS: Skin, left postauricular scalp, excision: Inflammation, Fibrosis, and residual melanoma, widely excised.

                CLINICAL INFORMATION:
                Specimens (s): Left postauricular scalp, melanoma, additional donut, stitch at 12 o'clock. ICD code (s): C43.9.

                GROSS DESCRIPTION:
                The specimen is received in a formalin-filled container having the patient's printed identification data including the patient's name. The speciment consists of a non-elliptical, somewhat circular donut-shaped biopsy of skin marked with a suture with orientation as indicated on the requistition site/other. This is then designated the "`12 o'clock position". The outside diameter of the donut biopsy measures 10.7 x 10 cm to a depth of .5cm. The inside diamer of the dnout biopsy measures 7 x 6.5 cm to a depth of .5 cm. The outside margin is inked green green; the inside margin is inked black. The surface of the skin is variable veige to light tan with dark hair extending from the 4 o'clock position until the 11 o'clock position. The measurement of skin wideness at the 12 o'clock position is 1.9 cm, 1 o'clock position is 1.8 cm, 2 o'clock position is 1.9 cm, 3 o'clock position is 2cm, 4 o'clock position is 1.8cm, 5 o'clock position is 2 cm, 6 o'clock position is 1.7 cm, 7 o'clock position is 1.6 cm, 8 o'clock position is 1.5 cm, 9 o'clock pisition is 1.7cm, 10 o clock is 0.8 cm, and 11 o'clock is 2cm. The ellipse is serially sectioned in a clockwise direction into 74 pieces and entriely embedded in 25 cassettes.

                MICROSCOPIC DESCRIPTION:
                There is inflammation and fibrosis characteristic of prior procedure site. There is residual atyptical nested melanocytes at the dermoepidermal junction and in the superficial dermis, characteristic of residual melanoma. The specimen was labled with antibodies to melan-a, which better delineated the neoplasm. Margins are widely free of the neoplasm in the examined sections.

                IMMUNOHISTOCHEMISTRY STUDY:
                Deparaffinized sections of formalin-fixed tissue and the appropriate controls are incubated with the antibodies/andibody listed below. Localization is via: biotin free multimer immunoperoxidase method. Results are outlined in the table below:

                Block A1
                Cells of Interest

                Melan A RED Positive

                Block A2
                Melan A RED Positive

                Block A3

                Melan A RED Positive

                Block A4

                Melan A RED Positive

                Block A5

                Melan A RED Negative

                Block A6
                Melan A RED  Negative

                Block A7
                Melan A RED  Negaitve

                Block A8
                Melan A RED Negative

                Block A9
                Melan A RED  Positive

                Block A10

                Melan A RED  Negative

                Block A11
                Melan A RED  Negaitve

                Block A12
                Melan A RED Positive

                Block A13
                Melan A RED Negative

                Block A14

                Melan A RED  Negative

                Block A15
                Melan A RED  Negative

                Block A16

                Melan A RED Negative

                Block  A17
                Melan A RED  Negative

                Block A18
                Melan A RED  Positive

                Block A19
                Melan A RED Positive

                Block A20

                Melan A RED Negative

                Block A21
                Melan A RED  Positive

                Block A22
                Melan A RED Positive

                Block A23
                Melan A RED Positive

                Block A24
                Melan A RED Positive

                Block A25
                Melan A RED Positive

                  kellylizzz
                  Participant

                    I have a sentinal node biopsy on Friday and they're doing the skin graft reconstruction friday as well, so I'll know in about 2 weeks whether my lymph nodes have been impacted or not. 

                  kellylizzz
                  Participant

                    Oh it was 12 x 10 cm in total by the end of today, that they cut out. That's with 2cm margins. 

                    kellylizzz
                    Participant

                      Aww thank you Mike! I'm sure it'll all end up ok, I'm just surprised at how big it is, and some folks here were marveling at the unusual presentation of it, so I figured I'd update everyone ! I appreciate the support !!! 

                      kellylizzz
                      Participant

                        I'll definitely update everyone once the pathologist tests the excised lesion! 

                        kellylizzz
                        Participant

                          They (the ENT plastic surgeon doing the surgery) said that since the CT of my neck was unchanged from 4 years ago, and the lesion is only .7mm thickness as far as they know from the punch biopsies, they don't think the SLNB is necessary. 

                          kellylizzz
                          Participant

                            They prescribed me that to start taking two days before the surgeries, taking it now. 4 times a day! 

                            kellylizzz
                            Participant
                              In the album I linked to in the first but of this post there’s a picture pre any biopsies from the day I noticed it in June. The trouble is that I can’t see this part of my head, so I have absolutely no idea how long it has been there. I know for the last year or so I have felt the texture change back there. I had a mole there I picked at off and on over a decade, so I assumed it was just that I guess. But yeah I noticed the skin behind my eae got bumpy and would bleed when I pressed down or fidgeted with the area too much about a year ago, but never thought to look at it. I only discovered the lesion visually in June 2018, because I was taking a picture of a super good French braid I did.

                              As you can see in the addendum from the UCSF pathologists, they agree it is highly unusual, but yeah since there was positive testing for the s100 antigen and since there was complete expression loss of p16, how could it not be melanoma? Wouldn’t UCSF say if they weren’t sure?

                              As for the size etc when I first saw it, it looked pretty much how it does now but less flakey/scaly and more evenly textured, and it didn’t go so far into my scalp as it does now. It also didn’t involve my ear crease as much as it does now. It seems like parts of it have sunken down while other parts puffed up, idk, it’s absolutely weird. But they ruled out sarcoidosis and necrobiosis etc.i guess I assumed they’d have tested for anything else it could be you know? Considering so many pathologists tested the specimens themselves.

                              Here it is as of today:https://i.imgur.com/wvDB9go.jpg

                              You can see the bright white spot in the lower left, that seems melanoma related from what I’ve read. And the weird mole on the right, that has been there but different for over a decade.

                              Here it is the day I noticed it:https://i.imgur.com/Hwp3dM2.jpg

                              kellylizzz
                              Participant
                                Also though, the biopsies were done July 2nd, so maybe it’s in a different growth phase now and that’s why it is expanding and changing texture? I’m interested to see what the pathologist finds on Thursday.
                                kellylizzz
                                Participant
                                  I’d certainly love for it not to be melanoma, but isn’t the p16 expression loss and immunoreactivity with S100 antigen pretty melanoma specific?

                                  All the doctors have said it is a very strange case, though. Part of me wonders if it could be multiple things happening at once. It visually looks more like a breast cancer metastatic lesion than anything else I’ve seen,and I’ve seen a lot of pictures of various lesions over the last two months.

                                  But yeah, since it reacted to the s100 antigen and all started near a mole that’s rapidly changing along with the greater lesion, and since they did three punch biopsies and the second two were all sent to and tested by three different pathologists and UCSF is supposed to know their stuff, I’d be surprised if it was not melanoma. My family history is very melanoma ridden. My dad had stage 3 incepid superficial spreading melanoma when he was 37, my paternal grandmother had it reoccur multiple times throughout her life too. I have the red head Gene from my mom, too. My skin is extremely translucent.

                                  But the lesion is certainly weird as heck. That’s for sure. My doctor’s have said my body doesn’t like to follow text books and that is very true. I have a lot of things that are supposed to be super rare, so idk.

                                  I had another small pink lesion biopsied from my upper thigh and that came back as mild perivascular lymphocytic inflammatory infiltration with small vessel cell wall thickening but no histological epidermal changes, and have generally a lot of vascular spots and telangiectasias, too. And I’ve had passive hepatic congestion for 4 years, though it has improved over that time, but they don’t know what caused it or why it’s getting less pronounced.

                                  So basically I’m used to confusing doctors and hope the pathology of what they cut out gets more clear answers, but I would be surprised if it wasn’t melanoma. Surprised but glad.

                                  kellylizzz
                                  Participant

                                    There isn't much time between now and the surgery to get a second opinion. It's this Thursday and Friday. The surgry will be done by a plastic surgeon because it is large and in a difficult spot on my head I think. The sugreon seems highly recommended from every doctor I've seen so far, and they work at both the large clinic I have always gone to and a large well regarded regional hopsital up here. I will get clarification when they call me Tuesday morning, though, on exactly what procdedure I'm getting. The summary mentions slow Mohs and WLE so yeah.

                                    But since the lesion is pretty giant, could they not feasibly do the slow Mohs on just a bit of it and then do testing on that and have more than enough of the melanoma left on my head to do the SLNB with if the part they test is more than 1mm thick? Then do a full WLE after, to get everything fully out and get a good thickness measurement from that too?

                                    But yeah I'm north of Seattle, UCSF were just the pathologists that gave the final diagnosis of the lesion behind my ear on my head, I've only been seen in person by the dermatologist and plastic surgeon up here in Everett. But UCSF did have the biopsies flown down from my local clinic for testing so they have given a second opinion in that regard, and they sent lots of pictures too. 

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