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24 years old with 6 x 9cm amelanotic melanoma

Forums Cutaneous Melanoma Community 24 years old with 6 x 9cm amelanotic melanoma

  • Post
    kellylizzz
    Participant
      Here’s some of the pathology report:

      ADDENDUM from Dr. Walsh, 7/19/2018: Please see enclosed a copy of the
      consultative report from University of California San Francisco in which
      a diagnosis of MELANOMA OF 0.7 MM IN THICKNESS was issued. Please see
      their report for a full synoptic. In view of the partial samplings the
      level of invasion must be viewed as an estimate. Further surgical
      therapy with appropriate margins is recommended.

      CONSULTATION REPORT from Dr. Timothy McCalmont, 7/17/2018:
      Diagnosis: Melanoma of 0.7 mm in thickness
      Note: Three different partial punch biopsies have been evaluated jointly
      as the basis for this consultation, and the findings in all are
      generally similar. This highly unusual melanocytic proliferation shows
      histopathologic findings of early amelanotic melanoma occurring in a
      young adult patient. Immunostaining for p16 was included in our
      assessment and demonstrates complete expression loss, and this finding
      lends additional support to interpretation as melanoma.
      Phosphohistone-H3 immunostaining (in combination with Melan-A)
      demonstrates only partial Melan-A immunoreactivity and also demonstrates
      that the mitotic index is extremely low, which is reflected in the brief
      synoptic that follows.
      Procedure: partial punch biopsy x 3
      Microscopic tumor type: amelanotic melanoma
      Breslow thickness: 0.7 mm
      Ulceration: not detected
      Margin: partial biopsies
      Mitotic index: 0
      Regression: not detected
      Provisional pathologic staging (pTNM): pT1a

      The first biopsy was taken June 14th, and the second two were taken July 2nd. Got sent to three pathology offices, the final one being UCSF, who diagnosed it as melanoma.

      It’s been changing a lot. Extremely itchy and expanding onto my ear and up my scalp. Every doctor who has seen it makes such perplexed sounds as they examine me.

      I have surgery the 16th and 17th. They’re cutting out as much as possible while keeping my ear on my head on the 16th, sending it to a pathologist to determine true thickness, then doing reconstruction with a skin graft from my thigh the 17th, and they’ll cut more out the 17th if the pathologist determines that to be necessary.

      What did y’all do while you waiting for surgery ? The biopsies had no ulceration, but it has started to bleed sometimes, especially on the back of my ear, is that ulceration? The texture is truly bizarre as well, over the whole lesion.

      Here’s an album which contains pictures of the very weird cancer on my head and how it’s gotten scalier from June to August: https://imgur.com/a/stwhl1Y

      And folks who have had large lesions like this….how was healing ?

      Honestly I think it is thicker than the .7 the partial punches got measured as, because it’s stinging more and more and has started to bleed and ooze in parts as you can see in the album, so I’m nervous. And I don’t see how they can excise it if it’s on my ear but not take my ear. Wouldn’t leaving it be bad? But I want my ear….blah

    Viewing 8 reply threads
    • Replies
        kellylizzz
        Participant
          Oh and what does complete expression loss mean in relation to the p16 stain?
            kst
            Participant

              I understand your anxiety about your ear.  I was in a similar situation when my primary was discovered in my ear canal.  Request to see a prosthetic doctor for a just in case consultation.  After my meeting, she convinced me even a complete ear replacement is difficult to notice.  After two surgeries and radiation to my ear it is still with me after one year and hopefully yours will be also.  I will let someone more familiar with your type of melanoma help you with your path report.

              Susanne

              kellylizzz
              Participant
                Thank you for the response! I hadn’t even thought of prosthetics as an option, I’ll certainly look into that if it comes to that !
                AN8
                Participant

                  Hi there!  So sorry you have to join us on this site…esp at such a young age.  Kuddos for doing your research.  Knowledge definitely works in your favor.  I can help you with the P16 question as I researched it extensively when I was obsessing over how my diagnosis of melanoma could affect my daughter genetically.  

                  P16 is a tumor suppressor protein that in humans is encoded by the CDKN2A gene.  Everyone gets 2 CDKN2A genes..one from mom and one from dad.   It plays an important role in cell cycle regulation by decelerating the cell's progression and therefore acts as a tumor suppressor that is implicated in the prevention of cancer.   Testing for the presence (expression) of p16 in tumors aids in the diagnosis as the presence of p16 indicates a benign lesion, the loss of p16 indicates a possible malignant lesion.  For example, I and my daughter had a spitzoid mole biopsied.  Spitzoids are odd atypical moles and are a challenge to diagnose.  The pathologist ran a p16 stain as an added step to make a final benign diagnosis in both mine and my daughters moles as p16 was present in both.

                  P16 testing is used as a pathological tool in other cancers as well such as cervical (HPV) and pancreatic.  

                  I hope this helps clarify that aspect of your post.  My melanoma removal and skin graft was located on my calf so no help here with the ear location.  Will they do a SLNB?  I don't recall you mentioning that.  

                  I do wish you the very best.  Please continue to ask questions.  There are many knowledgable people on this site who have personal experiences.  You are in my prayers. 

                   

                  kellylizzz
                  Participant
                    Thank you for explaining, that definitely makes sense about p16 expression loss!

                    And as far as slnb, they said they’d determine whether or not one was necessary based on the pathology report after day 1 of surgery. They did a CT scan of my neck though, here is that report:

                    “FINDINGS:
                    No enlarged cervical lymph nodes are present. There is a small left posterior neck lymph node (series 2, image 63), which measures 0.4 cm in short axis, however this was seen on CT 2014.
                    There is mild hyperattenuation within the skin in the left postauricular region overlying the mastoid tip (series 2, image 72), which may relate to site of melanoma and post punch biopsy changes.

                    No mucosal lesion is identified.
                    The vocal cords are normal.
                    The thyroid has normal CT appearance.
                    The salivary glands are unremarkable.
                    The visualized inferior brain is normal.
                    No vascular abnormality is identified.
                    The paranasal sinuses are well aerated.
                    The lung apices are clear. The superior mediastinum is normal.
                    No significant cervical stenosis is present.
                    No bony abnormalities are present.

                    IMPRESSION:

                    1. Hyperattenuation within the skin of the left postauricular region, which may relate to a site of melanoma and punch biopsy.
                    2. No lymphadenopathy within the cervical neck.”

                    The hyperattenuation, could that be related to the thickness of the melanoma ? Like, would a thin one hyperattenuate so much ?

                    But yeah since the lymph nodes they can see are the same as they were in 2014, they are holding off on the slnb unless the pathologist determines it’s necessary after the excision.

                    mbrrna
                    Participant

                      I just wanted to share some information regarding the skin graft. My elderly mom had a skin graft in April – the donor site was also the thigh and that was the area that caused the most discomfort. It was finally suggested that we purchase Mepiform Safetac Soft Silicone Dressings to cover the thigh, and these immediately resolved the pain she was experiencing. You can't use them until the donor site has healed, but I just wanted to pass that along in case you experience the same issue.

                      Wishing you well,

                      Amanda

                      lkb
                      Participant

                        Re: donor site for skin graft, my initial bandages were thin and the site (thigh) was irriated and messy. However, my discomfort was greatly alleviated with Duoderm CGF (Control Gel Formula). I started using this dressing about 6 weeks after surgery (rec by my regular dermatologist). Still using it now,10 mos after surgery. (You are young and, I hope, will heal faster.) Best if applied on top of a non-adhesive gauze that is well covered in lubricant to avoid sticking during dressing changes (every three days). Easiest removal is when wet, during or immediately after a shower.

                        kellylizzz
                        Participant
                          Thank you for sharing your experience, very good to know about duoderm CGF.
                        kellylizzz
                        Participant
                          Also I went to the walk in clinic initially and they diagnosed this as contact dermatitis and gave me a non urgent referral to the derm, which meant I wouldn’t even have had my first appointment until August 20th or something !!! I’m glad I called and had them switch the referral to urgent!
                            AN8
                            Participant

                              Yes ma'am, you are your best advocate.  Ask questions…as many as you need to. If something doesn't feel right…make an appt.  Peace of mind is very very important.  Without it…the worry and the sleepless nights do nothing for your over all well being. The one thing about the SLNB is that it is normally done prior to the tumor being removed as the dye is inserted directly into the tumor to show its path. It's not as beneficial once the tumor is gone.  I am stage 1b.  The derm and 1st onc I saw said no SLNB.  Tumor removed.  My 2nd opinion with a specialist said he would have done one bc even tho my lesion was very thin at .44, it was focally ulcerated.  So he has my lymph nodes ckd via ultra sound every 3 months since my tumor was already removed.  You may be a different situation since you are having a "2 step" procedure.  Just sharing what experience I had. Please keep us posted on how you are doing. 

                              kellylizzz
                              Participant

                                I misremebered about what they said regarding the SLNB, here is their plan:

                                 

                                "Discussed pathology and standard recommendations of excision with 1cm circumferential margins for T1a melanoma.  Staging discussed. Explained two day procedure with slow Mohs processing.  Possibility of deeper melanoma requiring larger excision or additional adjunctive procedures discussed. Specifically discussed possibility of sentinel node biopsy if melanoma has depth >1mm. Processing of that discussed as well including additional surgery, referral to another surgeon for SNB.  If WLE proceeds as expected, pt shown expected size of excision with margins, discussed reconstructive options.  First visit would be for excision, pt would go home with bandage, and pending pathology results pt would undergo repeat excision and/or closure the following day in the OR given need for STSG.

                                Given size of lesion pt will require STSG from thigh.  Pt sleeps on side, therefore will proceed with left thigh STSG donor site. Discussed procedure at length and risk of bleeding, infection, scar, scar contracture causing deformity, graft failure, positive margins, need for SNB, need for further procedures, contour deformity, misalignment of hairline, graft color and thickness mismatch, alopecia of graft, numbness around area, recurrence or incomplete excision of melanoma requiring further procedures.  Informed consent obtained." 

                                I'm confused on how they can do the SNLB after doing slow Mohs, but yeah they said they'd do one if needed? 

                                Thank you for that info though very good to know before the procedures have happened! 

                                kst
                                Participant

                                  Are you having the surgery at UCSF or another hospital?  A second opinion by a team at a major university hospital is a minor inconvenience at worst.

                                  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. 

                                  MelanomaMike
                                  Participant

                                    Hi Kellylizzz, im Mike, a "regular" here at Bar MRF, i to am battling Melanoma {since 08} but got serious last year as it now inhabits my lungs {my primary was left leg from 08 to 2017 multiple surgeries} now im being treated with various Immunal Therapies.

                                     I just wanna wish you hope and send good vibes yer way, gosh yer smart, some folks here really know all the medical  "lingo" of their own melanoma, i just know that i have it & that im still alive thanks to my Team {including my wife Hillary}  and thats all i really need to know, im keepin' it simple…take care, Mike..

                                      kellylizzz
                                      Participant
                                        I appreciate the good vibes and am sending good vibes your way too!I hope your immunal therapies help!
                                      kellylizzz
                                      Participant
                                        Oh this is the path report pre third opinion from UCSF:

                                        ++++ Amendment ++++
                                        Amendment #1: Additional Information Received

                                        FINAL DIAGNOSIS:

                                        A. Skin, left postauricular superior, punch biopsy: Compound melanocytic
                                        proliferation, See comments and addendum.

                                        B. Skin, left postauricular inferior, punch biopsy: Compound melanocytic
                                        proliferation, See comments and addendum.

                                        CLINICAL INFORMATION:
                                        Specimen(s): A-B: Punch, sarcoid vs birth mark. A: Left postauricular
                                        superior. B. Left postauricular inferior. ICD Code(s): D48.5.

                                        GROSS DESCRIPTION:
                                        Two specimens are received in formalin-filled containers each having the
                                        patient’s printed identification data including the patient’s name.

                                        A. The first specimen consists of a 0.4 cm punch-type biopsy to a depth
                                        of 0.4 cm. The surface of the biopsy is pale grey to light tan. The
                                        specimen is bisected when appropriate, wrapped in lens paper when
                                        appropriate and entirely submitted in one cassette.

                                        B. The second specimen consists of a 0.4 cm punch-type biopsy to a depth
                                        of 0.3 cm. The surface of the biopsy is pale grey to light tan. The
                                        specimen is bisected when appropriate, wrapped in lens paper when
                                        appropriate and entirely submitted in one cassette. (re/bpp)

                                        MICROSCOPIC DESCRIPTION:
                                        A. Dr. John Walsh’s microscopic description: Sections show within the
                                        epidermis a crowded to focally confluent proliferation of melanocytes
                                        with mildly to moderately enlarged nuclei. These melanocytes are
                                        disposed singly and in nests along the dermal-epidermal junction and
                                        extend into superficial adnexae. Attenuation of the epidermis is
                                        observed. Pagetoid scatter is not well developed, as highlighted by a
                                        Mel-A immunoperoxidase stain (with an appropriately staining external
                                        control). In the papillary dermis there are single and nested
                                        melanocytes. While some appear small and somewhat spindled and
                                        demonstrate immunoreactivity with only S100 antigen and not Mel-A,
                                        others have larger round nuclei and appear similar to those in the
                                        overlying epidermis. Peripheral margins are involved.

                                        B. Dr. John Walsh’s microscopic description: Sections show within the
                                        epidermis a variability crowded proliferation of melanocytes disposed
                                        singly and in nests. Junctional melanocytes have mildly to moderately
                                        enlarged nuclei and there is focal pagetoid scatter of single and nested
                                        melanocytes, as focally highlighted by a Melan-A immunoperoxidase stain
                                        (with an appropriately staining external control). In the superficial
                                        dermis there are single and nested melanocytes that appear relatively
                                        uniform. Peripheral margins are involved.

                                        COMMENT: My differential diagnosis includes melanoma and an unusual
                                        compound nevus. These specimens along with DX18-1114 will be sent to
                                        University of California San Francisco for consultation and an addendum
                                        will be issue upon receipt of their report.

                                        stars
                                        Participant

                                          Oh you poor thing. This is a bizarre kind of case, I have to say I've never seen or heard of anything like it. And believe me, since being diagnosed with melanoma, I've done an awful lot of googling. Part of me is hoping and praying that this is not melanoma after all because it is such an unusual and fast-moving presentation.  You can see from this somewhat disturbing image bank of amelanotic melanoma, yours really doesn't fit the profile:

                                           

                                          https://www.dermnetnz.org/topics/amelanotic-melanoma-images/

                                           

                                          I'm really hoping that at surgery stage, this turns out to be some other weird thing. In any case, you are young and will heal well and this is a spot where you can use hair to your advantage if you have some scarring. It's cold comfort but I do think that when it's all said and done, a good plastic surgeon will have you looking good in the end. However, my main wish for you is that this turns out to be something different. Melanoma is a slippery beast, you can see that different opinions are needed so already doubt creeps in. It is just so… weird. To me, it's almost too large/widespread to melanoma, most of which are fairly innocuous little spots and freckles. Also, your pathology report indicates a fairly lazy melanoma – no mitosis, no ulceration. Why the aggressive spread on top – it seems like you can practically see the thing growing? It doesn't add up. I'm hoping and praying for a speedy diagnosis/treatment/recovery or better still… a misdiagnosis.

                                            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.

                                              A
                                              Participant

                                                I am very sorry about this diagnosis and I also agree with others that this lesion looks very unusual for amelanotic melanoma.
                                                Wonder how did it look when you have first noticed it? Was is as big from the beginning? It is really, really unusual presentation for melanoma.

                                                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

                                                  stars
                                                  Participant

                                                    You're pretty switched on, and what you say is correct – however, it is just so NOT like any melanoma that I've ever seen… the main thing is, you have the thing found, biopsied, on your way to complete removal. It's relatively thin and doesn't seem aggressive (no mitosis). Added to that, you are switched on and thinking well and doing your homework. All in all it's a pretty good… just odd… picture. Keep us updated – I just genuinely find this to be so odd!

                                                    kellylizzz
                                                    Participant

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

                                                      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.
                                                      doragsda
                                                      Participant

                                                        I would seriously push for, if not the SLNB this week, at least the nuclear medicine part.   They will inject a radioactive dye into the lesion and track it to the sentinel nodes, so at least they are identified and could be biopsied later.   Once the lesion is cut out, they can't idenify the sentinel nodes any longer, as the drainage pathways are disrupted by the surger.   The SLNB can be an important piece of staging information, which can affect future treatment and even insurance coverage (treatments are approved and paid for in State 3 patients that wouldn't be covered in a Stage 2 patient) – so the information given by the SLNB can be important down the road.

                                                          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. 

                                                          Brittany1999
                                                          Participant

                                                            Hi, I’m also hoping this ends up only being on your surface and this is fully behind you forever after healing from surgery. I wanted to ask if you did go through a cycle of antibiotics just to see if there may be bacteria involved (as you mentioned there may be multiple things going on). An antibiotic like Cephalexin.

                                                              kellylizzz
                                                              Participant

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

                                                              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
                                                                  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!

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