24 years old with 6 x 9cm amelanotic melanoma

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 !

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.

Thank you for sharing your experience, very good to know about duoderm CGF.

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! 

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. 

I appreciate the good vibes and am sending good vibes your way too!I hope your immunal therapies help!

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.

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

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

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.

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. 

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