Home Forums Melanoma Diagnosis: Stages I &II Couple of questions, newly diagnosed

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  • #20402
    Onlymej
    Participant

    Hello everyone. First, I wish you all long and happy and healthy lives.

    A few weeks ago I would never ever have thought I would frequent this forum in my life. I am skin type III, dark hair and eyes, tan, not a sunbed user. I have had a few suburns in my life but really nothing extensive. I have no family history of skin cancer. But I am not a huge sunblock user either. I was always a proponent of everything in moderation. Well this proved me wrong. Once I took a melanoma risk assement and it came back much below average risk. mmmmmm.

    Two weeks ago I turned and saw a mark (like a stain) on the back of my arm in the mirror. It was small. Later I would find out it was about 3 mm. Its not something you would see becuase of where it was (above my elbow). BTW I had been to the dermatologist for another matter and he had checked me less than 6 months before.

    I immedialtey went to the dermatologist and she told me it was either a atypical growth or something called lentigo maligna. I reallly really was hoping she was wrong.

    Well the dermatologist called later that week and said “Dont freak out. What I am going to tell you has 99.9% survival rate, and Clinic Clinic 100% survival rate. You biopsy showed you had a atypical junctional lentigious hyperplasia….. and then he said, lentigo maligna melanoma in situ”. He said he was very proud of me for catching it the way I did/. Most people would have ignored it. Honestly, at that point I was kind of proud of myself for catching it.

    Now I need some help with people that have been there, done that.

    1. I am having mohls surgery for the lesion on Monday. I keep reading on here its not advised? This was recommended by the dermatologist

    2. The biopsy was done with a deep shave. was that bad? I am so frightened that the mohls is going to show invasive growth and I dont know if I can handle any more problems right now

    3. I want to say she cauterized the area – was that bad?

    4. I realize I was lucky and to be honest a future melanoma is not what scares me. I think I will be very vigilent and go back for my screenings, that is not where my fears lie. My fears lie in th efact that my body broke down and created something that is supposed to be on the face of an 70 year old woman, not on my 45 year old arm. So what does that mean for me? I read a study that said melanoma in situ sufferers have a high rate of other types of cancer. That scared the you know what out of me because I am already high risk for breast cancer, and my mother died from this.

    5. Since some consider lentigo malgna a precancerous change, do I check yes when they ask me on forms if I had cancer?

    6. Everyone around me acts like its no big deal, at all. They didnt get told they had melanoma. They think their midly atypical moles are the same thing. Its like oh well you have to get it taken out so what?

    I am overwhelmed by all of this. I dont know what to think.

    #54978
    7spider
    Participant

    Sounds like you caught this very early, so the odds are in your favor that everything will be ok. Just stay informed, be extra cautious w/ the sun and don’t be afraid to get a second opinion regarding your pathology report and the treatment plan. Welcome to the club ! The forums and people on it will help you w/ your questions and concerns. Good luck and don’t freak out !

    #54979
    Catherine Poole
    Keymaster

    Lentigo maligna is a slow growing lesion that usually happens in older people with chronic sun exposure. Doesn’t sound like you but insitu added in, means low risk. I don’t know if MOHS is the best approach as melanoma of any kind usually requires a wide excision. But I know that MOHS can be an approach to this. I wouldn’t worry about any further problem with this. You may want to get another opinion though on the pathology to be sure of the diagnosis and whether MOHS would be best in this situation. Did a dermatopathologist look at the pathology?

    #54980
    Onlymej
    Participant

    Catherine Poole wrote:

    Lentigo maligna is a slow growing lesion that usually happens in older people with chronic sun exposure. Doesn’t sound like you but insitu added in, means low risk. I don’t know if MOHS is the best approach as melanoma of any kind usually requires a wide excision. But I know that MOHS can be an approach to this. I wouldn’t worry about any further problem with this. You may want to get another opinion though on the pathology to be sure of the diagnosis and whether MOHS would be best in this situation. Did a dermatopathologist look at the pathology?

    I am not sure, I think so as the biopsy was sent to the normal dermatology lab. Wouldn’t they use demapathologists in general? Many do you ask? Do you think it’s more serious than what they are saying? My MOHs surgery is Monday so I am thinking I don’t had time for second reading of the slides. My dr said it was so small and superficial they don’t want to take of chunk of my arm when it’s not necessary. They will start with 5 mm margins, I believe and then test and if needed to to 1 cm.

    #54981
    Worrywart
    Participant

    Hi there,

    I had the exact same diagnosis. Melanoma in situ, lentigo maligna subtype. It was on my arm. I was 34. I am now 38.

    1. I would not have MOHS for melanoma! You need a wide local excision and you need more than the usual .5 margins because this subtype of melanoma has a very high local recurrence rate. I have approx .8 margins on mine.

    2. Did your pathology report have margins involved? If so, I would be concerned that your derm cauterized the area!

    3. I would get a second opinion on pathology…a MUST for ANY cancer diagnosis.

    Best wishes!

    #54982
    cohanja
    Participant

    . Did your pathology report have margins involved? If so, I would be concerned that your derm cauterized the area!

    Why? What does that do to cause concern?

    #54983
    Onlymej
    Participant

    Worrywart, they start with 5 mm then test and keep testing until no atypical cells are found. I believe this is even better than regular excision for lentigo maligna….http://www.skinandallergynews.com/index.php?id=372&cHash=071010&tx_ttnews%5Btt_news%5D=20074

    #54984
    Onlymej
    Participant

    cohanja wrote:

    . Did your pathology report have margins involved? If so, I would be concerned that your derm cauterized the area!

    Why? What does that do to cause concern?

    Yes it said the top layer of skin was still positive on the margins. Is this a question for me? I am also asking. I don’t know if they did or not, I didn’t watch the shave excision…but maybe they did?

    #54985
    Onlymej
    Participant

    Here is my thought on a second reading,. Will it change treatment? Probably not. I am not sure I want to know anymore, I think it will only upset me and not chage anything as far as it will be removed anyway…..i am sure the diagnosis is correct, the lesion was small and flat, could not have been there more than a few months. I doubt it’ was invasive as it was lentigo maligna, which apparently only becomes invasive as minority of the time.

    #54986
    7spider
    Participant

    Take the time and get a 2nd opinion and research the Mohrs surgery a little more on your own.

    #54987
    Onlymej
    Participant

    7spider wrote:
    Take the time and get a 2nd opinion and research the Mohrs surgery a little more on your thanks everyone for your thoughts on this. I have done a lot of research on it mohls seems to be a preferred method for lentigo maligna in many centers. Iam curious why, specifically, anyone thinks its a bad idea? Everything I read reports excellent results up to 99% recurrence free, is wle bettet?

    #54988
    Worrywart
    Participant

    MOHS uses frozen sections. Frozen sections work great for NONmelanoma skin cancer, but melanoma is different. The frozen section used by Mohs surgeons cannot differentiate very well between cancerous and noncancerous melanocytes. I would never have a ‘new’ treatment method (where you would be guinea pig) for a melanoma. In future they may perfect it, but as of now, personally, I’d just have the WLE. Why do you need narrow margins? It’s not even on your face. MOHS is used to get narrow (small) margins. They often use MOHS for melanoma in the elderly becuase it’s usually on their face, very large and has a broad lateral growth pattern. Yours is on your arm. There are even studies online that say that Lentigo maligna on the face of the elderly and melanoma in situ, lentigo maligna subtype – are two different beasts. The latter is the one that generally progresses to LMM. By the way – you didn’t have Lentigo Maligna Melanoma…it is only called that when it has an invasive component. So your derm got that wrong too. Are you being seen at a University or Speciality derm?

    #54989
    Onlymej
    Participant

    Worrywart wrote:

    MOHS uses frozen sections. Frozen sections work great for NONmelanoma skin cancer, but melanoma is different. The frozen section used by Mohs surgeons cannot differentiate very well between cancerous and noncancerous melanocytes. I would never have a ‘new’ treatment method (where you would be guinea pig) for a melanoma. In future they may perfect it, but as of now, personally, I’d just have the WLE. Why do you need narrow margins? It’s not even on your face. MOHS is used to get narrow (small) margins. They often use MOHS for melanoma in the elderly becuase it’s usually on their face, very large and has a broad lateral growth pattern. Yours is on your arm. There are even studies online that say that Lentigo maligna on the face of the elderly and melanoma in situ, lentigo maligna subtype – are two different beasts. The latter is the one that generally progresses to LMM. By the way – you didn’t have Lentigo Maligna Melanoma…it is only called that when it has an invasive component. So your derm got that wrong too. Are you being seen at a University or Speciality derm?

    Thanks worrywart, I appreciate your thoughts on this, I really do. I would not have posted if not wanting other opinions! The mohls will be done at a nationally known hospital center, by someone who researches and writes papers on it. I don’t think I ever said he said it was LMM, he said it was lentigious melancytic hyperplasia, lentigo maligna type, in situ. I will go back and reread what i wrote. My spellcheck may have changed it. No he is a regular dermatologist, general. I didn’t think this warranted seeing a melanoma specialist since once treated lentigo maligna is of no threat to the patient. I did think about going to someone else though for follow up skin checks in case something more invasive would develop. N

    #54990
    Onlymej
    Participant

    Onlymej wrote:

    Worrywart wrote:

    MOHS uses frozen sections. Frozen sections work great for NONmelanoma skin cancer, but melanoma is different. The frozen section used by Mohs surgeons cannot differentiate very well between cancerous and noncancerous melanocytes. I would never have a ‘new’ treatment method (where you would be guinea pig) for a melanoma. In future they may perfect it, but as of now, personally, I’d just have the WLE. Why do you need narrow margins? It’s not even on your face. MOHS is used to get narrow (small) margins. They often use MOHS for melanoma in the elderly becuase it’s usually on their face, very large and has a broad lateral growth pattern. Yours is on your arm. There are even studies online that say that Lentigo maligna on the face of the elderly and melanoma in situ, lentigo maligna subtype – are two different beasts. The latter is the one that generally progresses to LMM. By the way – you didn’t have Lentigo Maligna Melanoma…it is only called that when it has an invasive component. So your derm got that wrong too. Are you being seen at a University or Speciality derm?

    I am not sure about your statement, he got that wrong too? What did he get wrong?

    Thanks worrywart, I appreciate your thoughts on this, I really do. I would not have posted if not wanting other opinions! The mohls will be done at a nationally known hospital center, by someone who researches and writes papers on it. I don’t think I ever said he said it was LMM, he said it was lentigious melancytic hyperplasia, lentigo maligna type, in situ. I will go back and reread what i wrote. My spellcheck may have changed it. No he is a regular dermatologist, general. I didn’t think this warranted seeing a melanoma specialist since once treated lentigo maligna is of no threat to the patient. I did think about going to someone else though for follow up skin checks in case something more invasive would develop. N

    #54991
    Onlymej
    Participant

    Onlymej wrote:

    Worrywart wrote:

    MOHS uses frozen sections. Frozen sections work great for NONmelanoma skin cancer, but melanoma is different. The frozen section used by Mohs surgeons cannot differentiate very well between cancerous and noncancerous melanocytes. I would never have a ‘new’ treatment method (where you would be guinea pig) for a melanoma. In future they may perfect it, but as of now, personally, I’d just have the WLE. Why do you need narrow margins? It’s not even on your face. MOHS is used to get narrow (small) margins. They often use MOHS for melanoma in the elderly becuase it’s usually on their face, very large and has a broad lateral growth pattern. Yours is on your arm. There are even studies online that say that Lentigo maligna on the face of the elderly and melanoma in situ, lentigo maligna subtype – are two different beasts. The latter is the one that generally progresses to LMM. By the way – you didn’t have Lentigo Maligna Melanoma…it is only called that when it has an invasive component. So your derm got that wrong too. Are you being seen at a University or Speciality derm?

    I do see your point about it not being on my face. But if Mohls uses wle margins anyway, what is the difference? Are you saying you don’t trust the pathology reporting?

    I am not sure about your statement, he got that wrong too? What did he get wrong?

    Thanks worrywart, I appreciate your thoughts on this, I really do. I would not have posted if not wanting other opinions! The mohls will be done at a nationally known hospital center, by someone who researches and writes papers on it. I don’t think I ever said he said it was LMM, he said it was lentigious melancytic hyperplasia, lentigo maligna type, in situ. I will go back and reread what i wrote. My spellcheck may have changed it. No he is a regular dermatologist, general. I didn’t think this warranted seeing a melanoma specialist since once treated lentigo maligna is of no threat to the patient. I did think about going to someone else though for follow up skin checks in case something more invasive would develop. N

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