On Friday I was diagnosed with cancer. I met the oncologist yesterday. It’s a rare invasive and aggressive melanoma. I had a blue nevus mole on my head as long as I can remember, and it turned nasty hopefully fairly recently.
- January 9, 2020 at 6:31 pm
Unfortunately it is Clark Level 5 and Breslow Depth at least > 8.0mm. It has also invaded my nerves.
The pathology report showed 8 chromosomal aberrations, and I noted a complete loss of chromosome 3 and gain of chromosome 8 (MYC).
It also stated the melanocytes co-express MART-1 & HMB-45, and display a low proliferative index by Ki-67.
No ulceration, intravascular invasion or regression is noted, but perineurial invasion is noted.
The oncologist is hoping it’s localized, but that it could be in my lymph nodes, and he’s hoping it has gone no farther. I’ll find out after surgery & imaging next week (on the 17th). He thinks the nerves it has invaded aren’t connected to any main nerves and isn’t too worried about that, based on the position of it on my scalp.
I had it biopsied in 2016 and it was all clear, but they admitted they couldn’t detect it back then & had to send away for specialized testing which showed it, and that the test is a new one that just came out in the last two years or so, so who knows how long it’s been there. It’s extremely rare and not like anything they’ve seen before. He’s hoping it formed less than 2 years ago, maybe even just 5 months but we can’t be sure.
He did say it IS curable though, and he wouldn’t be using those words lightly I assume? I was expecting him to say it’s treatable not curable, but he said curable several times to me.
The last few days have been hell for me and my wife. I just want the surgery to be over so I know where I officially stand. I suppose I just need to get used to waiting.
- January 9, 2020 at 7:51 pm
First, I’m sorry you got that news, it is life altering for sure, and we wish you didn’t have to join our group. I’m so sorry that what appeared to be benign has turned malignant Just to share, my husband had a really large melanoma as well (turned out to be 22 mm) and all other criteria were on the extreme end as well. But he has done well for 5 years so far with surgery alone, at the time of his diagnosis, immunotherapy wasn’t approved treatment and there is more coming down the pipeline.
I know you are in kind of informational limbo until the surgery and they have the full pathology. the anxiety of waiting is one of the toughest parts of this journey. This board definitely understands the anxiety, especially in this time period. Just do the best you can, but don’t beat yourself up if you are anxious to get the surgery, WHO WOULDN’T BE! The hardest part is not having all the facts you need to make informed decisions. Just
Also, are you being seen by melanoma specialist? That is one of the key things members of this board will tell you, make sure you are seen by a oncologist who specializes in melanoma and has a great deal of experience with treating melanoma and has knowledge of all the research. It is one of the single most important variables. And you can always get second opinion too. Many people choose to go a large center that is known for both research and treatment.
Also, would recommend that the surgeon is a specialist in melanoma as well. Scalp is particularly complex area and based on estimated size of the lesion, it sounds like will be good size surgical area. What margins did they discuss? I know scalp can be hard area, so I would want to know what margins they are striving for around the lesion?
Just a quick question, did they happen to mention a type of melanoma? You mentioned a rare aggressive type that they couldn’t test for several years ago, did they give you a name other than melanoma? That would help in order to research about your particular situation. I haven’t heard of a new type of melanoma that they couldn’t test for until recently (there are some speculative diagnoses in the research literature, one in particular that I’m not sure is fully accepted by the melanoma research community) but I don’t want to speculate on what they mean by cure and type, so was wondering if they mentioned a “type” to you.
You are for sure in the intense information stage so please let us know, with even further “type” we can help provide information. You will have much more information after the surgery, pathology report, and imaging. Once you have that, you can develop a plan. the
It sounds like you have had the genetic testing as well, which is great, that can point you to some options.
Many hugs and this board will be an incredible source of knowledge as you get more information. keeping fingers crossed that surgery and imaging all goes well.
Hi Jackie, thank you for your reply.
- January 9, 2020 at 8:54 pm
Apologies for confusion regarding ‘type’, I probably misspoke. It’s officially “an atypical blue nevus-like melanocytic proliferation favouring invasive malignant melanoma arising in a cellular blue nevus”.
They state it is difficult to classify because of it’s behaviour and presentation. The blue nevus-like tumor with cellular and epithelioid patterns extensively involves the dermis and the subcutis. Epithelioid areas appear as larger and deeper subcutaneous nodules.
The doctor performing the surgery is the surgical oncologist at Duke Otolaryngology. He’s the only one in that department that is able to deal with melanomas, he deals with them all the time and he is sharing the case with their cancer review board as well.
Regarding the margins, I have an image of the report (and a hard copy), along with all of the chromosomal aberrations, etc and there’s a lot of info in there. Could I screenshot it and send it to you? I don’t see a way of including it here in my post unfortunately.
The planned procedures I’m booked for are:
INTRAOPERATIVE IDENTIFICATION (EG, MAPPING) OF SENTINEL LYMPH NODE(S) INCLUDES INJECTION OF NON-RADIOACTIVE DYE, WHEN PERFORMED (LIST IN ADDITION TO PRIMARY PROCEDURE)
BIOPSY OR EXCISION OF LYMPH NODE(S); OPEN, DEEP CERVICAL NODE(S)
EXCISION, MALIGNANT LESION INCLUDING MARGINS, SCALP/NECK/HAND/FOOT/GENITALIA; EXCISED DIAMETER 3.1 TO 4.0 CM
The day before the surgery I’m going for:
NM LYMPHOSCINTIGRAPHY INJECTION
And the day before that I’m going for:
CT NECK SOFT TISSUE WITH CONTRAST
Last March a CT scan of my abdomen was performed (I had gastritis due to medication I was taking which I’m not longer taking or suffering from), and my organs looked good. There was one lesion on my liver too small to classify which they thought I may have been born with, but I’m paranoid about that so I’m having them re-check my liver again to make sure that isn’t related.
To the touch my lymph looks feel fine, I’m not symptomatic in any way – no nerve pain along my head/neck etc.
Thank you so much for spending the time to respond to me. I’m a little out of my depth here, and I really appreciate it.
Thanks so much, and Bubbles comments are spot on, nothing can be known yet until surgery and pathology. I’m not too familiar with Blue Nevus and what that entails and how it potentially develops into melanoma but it does seem to be in the realm of dermal melanoma. It is interesting, my husband had a growth (looked like a blue skin tag), that had been there for years on his shoulder and he used to ask his primary care doc about and was always told not too worry. It then kind of went away for a year or so and then the tumor. He can’t really be staged since there was no overlying skin component to his melanoma , so he is stage 4 with unknown primary. But it was in the exact spot where the “blue” thing had regressed, there is some research debate about regression and primary dermal melanoma, etc. This is the research area that is currently being debated about whether there is a distinct type of dermal melanoma. His pathology showed both subcutaneous and dermal involvement with no overlying skin component so they couldn’t rule out that it was metastases from unknown primary elsewhere. As Bubbles said though, not much use to speculating, best to deal with the facts when they come in.
- January 10, 2020 at 7:16 pm
So not sure if what you are looking at possibly is a dermal melanoma which are located deep in subcutaneous and dermal area, nothing can be said until surgery and pathology. Once you get the surgery and pathology, much more will be known.
Just to sympathize, I get gastritis when I take prednisone! It’s brutal.
Many hugs, keep us posted. Hoping they get it out and everything is clear.
- January 9, 2020 at 10:04 pm
Like Jackie said, you are in the “discovery” phase just now. Don’t let all that “invasive” “malignant” “atypical” talk scare you. Melanoma is enough!!! I think what the pathologists are describing is more about the fact that your melanoma arose from a “blue nevus” than anything else. Sadly, melanoma can do whatever it wants. Some folks never know the lesion from which it came. It can be black, white, pink, blue, you name it. If they have already done some tissue typing – that is good. About half of melanomas are BRAF positive and half are not. That does not mean it is more or less aggressive (at one time there were some studies that considered that – and therefore some oncologists not that well versed on the rapidly changing landscape of melanoma have hung on to that). It just means that if you are BRAF positive, there are some targeted therapies that would be effective for you should you need them. There are some other studies that can be done but are less directly meaningful.
So, at this point you are exactly as you state. In need of a WLE (Wide local excision) to ensure that you have all the needed margins that are standard in the removal of a melanoma lesion along with an injection that will trace where your lymph drains from the site of the lesion so as to determine the sentinel nodes. The nodes that light up (it may be anywhere from 1-3 or so) will be removed along with the remaining lesion and margins. If those nodes are negative – you are pretty much done! You may have some scans, but not necessarily. Then you will need to follow up in some routine fashion with your doc and a dermatologist. If those nodes are positive, then you will be considered Stage III and depending on the degree of involvement within those nodes would be offered various treatment options.
Here are some melanoma basics from this site: https://melanoma.org/patients-caregivers/cutaneous-melanoma/
Here are two good sites that define melanoma staging:
I’m sure that is all clear as mud!! There are many caring, knowledgeable peeps on this forum. Should you have positive nodes, many here can provide lots of information about where you go from there. However, I am hoping that you will end up having your WLE and SLNB (Sentinel lymph node biopsy) and find yourself in the clear. However, you are correct – the landscape of melanoma care has changed dramatically just since 2011!!! Many of us here have been fortunate to reap the benefit of those advances. Personally, I was diagnosed as Stage IIIB in 2003 – long before there were any viable treatments. Watching and waiting did allow me to advance to Stage IV with lung and brain mets in 2010. Still, I was lucky enough to gain access to an immunotherapy drug still in clinical trials at the time (now FDA approved!) and am not only still here, but also NED (no evidence of disease….the description most often used in melanoma world – rather than cured – though we hope it will be a descriptor we can entertain soon!) with no further treatment.
Hang in there. It is a crazy new world and language I realize, but you can do this. I wish you my best. Celeste
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