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Dermal Melanoma

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Dermal Melanoma

Posted By
Anonymous
2/10/2020 3:47am
Activity
Replies: 6

Hi all!
This is Marta from Spain. Ihave been diagnosed in October 2019 with a primary dermal melanoma of 1.7cm. no union with the epidermis on the scalp.
I have had 5.5cm of skin removed and also biopsied the sentinel nodes without any sign of malignancy as well as PET scan.
My doctors have not recommended any treatment only follow up every 3 months and in April new PET.
I am very scared about the diagnosis since it is very atypical and does not give much information about it.
Could someone with the same case give me some additional information and some hope?
thank you very much to all!

chrispl1974 - (2/10/2020 - 6:28pm)

Hello Marta, so sorry to hear that you are eligible to join this club, which none of us wanted to be part of. I live in Germany, but standard of care for melanoma is pretty universal. I am not well versed in dermal melanomas, since I had the common standard cutaneous type, but Celeste and others on the forum can pint you in the right direction. I wish you all the best and always think about one thing. Right now , as in during the last 3-5 years, medicine and treatments have advanced more than in the previous 30-40 years when it comes to cancer and ESPECIALLY melanoma. I hope this also helps to give you some hope, since melanoma has become a curable disease, even in the final stage IV, but unfortunately not for everyone --- YET !

Marta1971 - (2/11/2020 - 3:27am)

Good morning Chris,
Thank you for your words.
It is being difficult to handle since there is little literature and research in this matter.
I,ve read that in 2011 there was a man with the same in this forum so that,s why I cheer up to participate in it because there are few in Spain and cannot find anybody to share their impressions with this atypical melanoma.
I am strong, eager, second chance to live life but I am too curious and I have little information.
I hope I can find someone who can help me or give advices.
A hug to everyone everywhere.
Have a good day.

jbronicki - (2/11/2020 - 9:34am)

Hi Marta,
I'm so sorry you have had to join this group. It is shocking to get a diagnosis. I can speak to a large "dermal" melanoma with no epidermal component . My husband had a 2.2 cm (22 mm) melanoma removed from his upper back/left shoulder area. It was in the subcutaneous and dermis region with no known primary. His original punch biopsy report from the dermatologist said possible "primary dermal melanoma" but I think that the doctor at MD Anderson didn't want to use this term at all (when I brought this up, I was met with resistance for even using the term), his pathology report after his WLE from MD Anderson says nodular melanoma. It could be because the treatment would be the same regardless at this point and up until then, it seemed to be a purely clinical diagnosis as the melanoma population was showing a very small group of people that had these large solitary melanomas with no skin component (technically stage 4) that were showing less expected spread, negative SNBs and longer survival, but there was no way to really determine this as different than nodular. There is some research regarding seeing if they can see anything differently in the immunohistology (staining) of these melanomas showing different expression than other types of melanoma (I've attached the publication below) . There was thought that these were either a regressed primary or possibly something arising specifically from the dermis region, unlike other melanoma that starts on top of skin and tunnels down. I've read the majority of research in this area for both solitary dermal melanomas and what they are suggesting as a different type of melanoma called Primary Dermal Melanoma . Dr. Susan Swetter did research in this area, but the numbers are small. I'm attaching my favorite research articles in this area:

https://jamanetwork.com/journals/jamadermatology/fullarticle/480101

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673232/

https://jamanetwork.com/journals/jamadermatology/fullarticle/419298

I think the take away for me is that there is of course hope, and it's great that your SNB was negative and scans were clear, but treatment options would be the same at this point so it needs to be addressed as "melanoma" which as we know can be aggressive and spread, so to be very vigilant about follow-up. Since it is 2020, I personally would ask about any adjuvant treatment options (such as immunotherapy) at this point based on the size of your melanoma, which would typically be considered "higher-risk" for recurrence. This term isn't meant to scare you, this is just the language they use based on past data (without all our new treatment protocols) but this is how they decide on how to move forward with appropriate monitoring plan for you based on the characteristics of your melanoma pathology. In my opinion, you want the most aggressive monitoring just to be safe, so every 3 months is great. But I'm not sure of what is currently available in Spain. You are your own best advocate and it is completely ok to ask these questions of your doctor. I would ask for sure and see if there are adjuvant therapies available to at least discuss.

So my husband was diagnosed 6 years ago, he had negative SNB, clear scans. Because adjuvant treatment wasn't available at this time, nor was immunotherapy approved yet, for those that had tumor removed and showing no evidence of disease elsewhere in the body, so he has done the wait and watch. He was scanned every 3 months for the first two years (the first , every six months for the next 3 years and now yearly. It has been about a year since his last scan. He is totally fine with this approach, and quite frankly, would have probably chosen this regardless of other options but that is him and his own comfort, he doesn't seem overly obsessed with this, unlike me :)

Many hugs. Please let me know if there is anything else you need, I have read just about every piece of research in this area of melanoma and there are some other case studies in the medical research world, but still not a huge amount of data.
Jackie

Jackie <3

jbronicki - (2/11/2020 - 9:45am)

Hi Marta,

Here is one more. But please note, these are older publications, this is from 2000. There hasn't been a great deal of "large" research in the most recent years, basically just case studies. There have been a some retrospective look at the data from historical cases:

https://jamanetwork.com/journals/jamadermatology/fullarticle/190733

Hugs,
Jackie

Jackie <3

Marta1971 - (2/11/2020 - 4:56pm)

Hi Jackie, thank you very much for the info...it is much more than anybody ever tell me...to be honest, everything that I know it is because I,ve read, investigate and look in every place I could...I have an almost Melanoma Degree!
In Spain we have Inmunotherapy and in very rarely occassions, Interferon...but my oncologist only suggested a 3 months follow ups.
Next step, another PET in april.
I have a question regarding the origin of it, do you think it is because ultraviolets rays and sun exposure? What your husband' doc told him about it? In my case in the scalp with brown hair, makes me think about any mutation (of course blame it on the sun) but they did not tell me anything about making the DNA analisis for BRAF or any others.
Sorry but for me it is very weird and it is also hard to wait...what will happen...I am a bit hypochondriac.
Lots of love from Spain and thanks again for al the info....this is priceless.
Good night.
Marta

jbronicki - (2/11/2020 - 9:33pm)

Hi Marta,

We all understand the hypochondria, don't apologize and I'm as guilty as anyone, and when you hear words like melanoma and all the criteria around it can be overwhelming. First, I can't say whether or not you have primary dermal melanoma, only the pathologist and doctor can do that, but there is still some debate about whether or not this is a distinct type of melanoma. I think the safest approach is to treat it as melanoma which means doing exactly what you are, getting all the information and advocating for yourself and researching all your options. Also, not sure of your system, if you don't feel your doctor is giving you all the information needed or the correct information about treatment options, always get a second opinion if that is an option and preferrably from a doctor or center that specifically deals with melanoma. . as people on this board will tell you, Interferon is no longer considered a good choice based on the data and showing minimal if any benefit in terms of recurrence and/or survival outcomes . My husband's doctor at MD Anderson said she would NOT recommend it. And that was in early 2014. The only thing he was offered at that time was IL-2 since no vaccine trials to recruitment were open at that time.

My husband's tumor showed the NRAS mutation which is seen in aobut 20-30% of melanomas. I can't really speak to the suspected origin, as the very limited data on this, but here is a portion of Swetter's article: "Bowen et al1 postulate that primary dermal melanoma may arise from nonepidermal melanocytes, from melanocytes associated with deeper appendageal structures, or from embryologic-melanocyte migration remnants; its true origin remains unclear. Likewise, no specific immunohistochemical staining pattern can be used to differentiate primary dermal melanoma from nodular or metastatic melanoma. The diagnosis of primary dermal melanoma requires clinicopathologic correlation and should be considered in patients with a solitary melanoma confined to the dermis and/or subcutaneous tissue with no identifiable primary site and no evidence of disease elsewhere. Subsequent larger studies are warranted to evaluate appropriate metastatic staging and to confirm the high survival rate for this subtype of melanoma."

Again, even these articles suggest they couldn't differentiate and not sure any new research has shown a clear signal. Here is a brief blurb/case study from the Journal of the American Academy of Dermatology from 2018 from a conference presentation, even the title suggests it still is a diagnosis of exclusion:

7907
A case of primary dermal melanoma: A diagnosis of exclusion
Christopher Schwartz, BS, University of South Florida Morsani College
of Medicine; Brooke Baldwin, MD, James A. Haley Veterans Hospital;
Eugene Sanik, DO, James A. Haley Veterans Hospital
Primary dermal melanoma (PDM) is a relatively recent term used to describe a rare
subtype of melanoma that simulates a cutaneous metastasis but is associated with
unexpectedly prolonged survival. Given their infrequent occurrence and metastatic
mimicry, these lesions are often worked up to rule out less indolent skin cancers like
primary nodular melanoma (PNM) and cutaneous metastatic melanoma (CMM).
PDM is often arrived at as a diagnosis of exclusion but our evolving understanding of
the genetic and histologic parameters of such lesions can save patients from
unnecessary radiation, biopsies, and excessive expense. A 67-year-old man with a
history of nonmelanoma skin cancer presented to the dermatology clinic with a
slowly growing right neck mass of 5 months duration. An initial punch biopsy of the
mass was done and revealed a melanoma with no connection to the epidermis. The
patient was sent promptly to ENT for surgical management and lymph node
dissection. The entire skin/mass interface was submitted and reviewed by pathology
for an in situ/epidermal component and it was found that the specimen was
dominated by a dermal mass measuring 4.8 3 3.9 3 3.7 cm. PET scan did not identify
any possible metastatic foci. The prognostic indicators, per CAP synoptic protocol
indicated a nodular melanoma by histology, with peripheral and deep margins
uninvolved by invasive melanoma, a mitotic rate of 6/mm2
, and no tumor regression,
microsatellitosis, lymph-vascular invasion, or lymph node involvement. Given the
clear excision margins, negative PET scan and that 0/42 lymph nodes were positive,
clinical observation going forward was eventually recommended. Primary dermal
melanoma is a diagnosis of exclusion. Dermatologists should consider PDM in the
differential diagnosis of patients with solitary cutaneous melanoma of unknown
origin. In this case, the diagnosis of PDM was arrived at after an initial pathology
diagnosis of primary nodular melanoma. Given that PDM is a distinct subtype of
melanoma characterized by improved survival, it is important to differentiate it from
PNM which it resembles histologically but carries a worse prognosis. PNM was
excluded because of a lack of overlying epidermal involvement, ulceration,
regression, negative node metastasis, and lack of evidence of distant metastasis. In
cases where the diagnosis is more ambiguous, recent studies suggest that additional
analysis through the means of immunohistochemistry can help differentiate PDM
from more aggressive variants.

Again, all of this limited research still suggests that the best approach is to consider this melanoma which means the treatment is still the same.

However, my husband's was located in a place he got regularly burned for 20 years gardening, right near and he also had a weird skin flap on his body that regressed for several years and this happened to be the location the nodular bump arose. His primary physician told him it was nothing for about 10 year. But again, we can't say specifically anything other than the pathology showed this was melanoma.

Marta, sounds like you are doing all the right things, so glad you are researching and requesting this information. This board is filled with great people who will share their knowledge and experience.

Many hugs and stay strong.

Jackie <3