Anyone here been diagnosed with amlenotic melanoma ?
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Anyone here been diagnosed with amlenotic melanoma ?

› Forums › General Melanoma Community › Anyone here been diagnosed with amlenotic melanoma ?

  • Post
    • January 5, 2017 at 10:09 pm
    SaraBear88
    Participant
    I found a place on the back of my thigh the other night and I am very scared it is melanoma. I have an appointment with a dermatologist but it’s not till the 10th and I’m so anxious I can’t sleep at night or eat . I have had 3 lymph nodes swell the past month , first under the left arm pit , then the left arm where the elbow bends and then 4 days ago the node where the supraclavicular node above the collar bone is swelled . I am so scared it is melanoma and it has spread to the lymph nodes and to my organs. I don’t remember the place ever being on my leg , it isn’t a perfect circle and it’s pink a little bit smaller than a dime . Any advice ?
Viewing 8 reply threads
  • Replies
      • January 5, 2017 at 10:34 pm
      Aloha14
      Participant

      Hi SaraBear,

      I was diagnosed with atypical nodular melanoma in Nov. I had a small round clear growth that looked like a blister. That's why I didn't recognize it as any type of skin cancer. It's a good thing you have a dermatology app't next week. I know from my recent experience that waiting for app'ts seems like forever in these type of situations. You might ask to be on a cancellation list in case another patient doesn't show up tomorrow or Monday and you could go earlier.  See if you can find something to occupy your time that relaxes you. I worked out at the gym daily while waiting for my surgery date and that also helped me get some sleep. Let us know how your app't goes.

        • January 5, 2017 at 11:00 pm
        SaraBear88
        Participant
        If you don’t mind me asking , how long had you had that spot ? What stage are you ? I am currently out of town visiting my husband’s family. The lymph nodes were tender and burning but they are no longer swelled , could that still point to cancer that has spread . I feel sick to my stomach and I’m scared that there is no chance this isn’t melanoma. Thank you for replying. It wish I had known that melanoma isn’t always black , that’s all I’ve ever known to look for :(. If it’s an advanced stage is there any hope for a cure ?
        • January 5, 2017 at 11:00 pm
        SaraBear88
        Participant
        If you don’t mind me asking , how long had you had that spot ? What stage are you ? I am currently out of town visiting my husband’s family. The lymph nodes were tender and burning but they are no longer swelled , could that still point to cancer that has spread . I feel sick to my stomach and I’m scared that there is no chance this isn’t melanoma. Thank you for replying. It wish I had known that melanoma isn’t always black , that’s all I’ve ever known to look for :(. If it’s an advanced stage is there any hope for a cure ?
        • January 5, 2017 at 11:00 pm
        SaraBear88
        Participant
        If you don’t mind me asking , how long had you had that spot ? What stage are you ? I am currently out of town visiting my husband’s family. The lymph nodes were tender and burning but they are no longer swelled , could that still point to cancer that has spread . I feel sick to my stomach and I’m scared that there is no chance this isn’t melanoma. Thank you for replying. It wish I had known that melanoma isn’t always black , that’s all I’ve ever known to look for :(. If it’s an advanced stage is there any hope for a cure ?
      • January 5, 2017 at 10:34 pm
      Aloha14
      Participant

      Hi SaraBear,

      I was diagnosed with atypical nodular melanoma in Nov. I had a small round clear growth that looked like a blister. That's why I didn't recognize it as any type of skin cancer. It's a good thing you have a dermatology app't next week. I know from my recent experience that waiting for app'ts seems like forever in these type of situations. You might ask to be on a cancellation list in case another patient doesn't show up tomorrow or Monday and you could go earlier.  See if you can find something to occupy your time that relaxes you. I worked out at the gym daily while waiting for my surgery date and that also helped me get some sleep. Let us know how your app't goes.

      • January 5, 2017 at 10:34 pm
      Aloha14
      Participant

      Hi SaraBear,

      I was diagnosed with atypical nodular melanoma in Nov. I had a small round clear growth that looked like a blister. That's why I didn't recognize it as any type of skin cancer. It's a good thing you have a dermatology app't next week. I know from my recent experience that waiting for app'ts seems like forever in these type of situations. You might ask to be on a cancellation list in case another patient doesn't show up tomorrow or Monday and you could go earlier.  See if you can find something to occupy your time that relaxes you. I worked out at the gym daily while waiting for my surgery date and that also helped me get some sleep. Let us know how your app't goes.

      • January 5, 2017 at 11:35 pm
      jennunicorn
      Participant

      First thing to do: take a deep breath. 

      Second thing: remember that it is more likely to be nothing than to be cancerous. Always remember that the chance of it being benign is always higher.

      Lymph nodes swell for a bunch of reasons, it's that time of year when all the germs and viruses are floating around, so it is more likely that your lymph nodes got swollen from something it was fighting off.. not cancer.

      If the spot is on your thigh, then it is highly unlikely lymph nodes in your upper body would swell in relation. 

      Try and keep yourself occupied with things to calm your anxiety. I have many family members and friends who have had many different spots removed and biopsied on their skin.. and only 2 had melanoma… and it was stage 0 which means it didn't even go beyond the top layer of skin. Many years later they've never dealt with it again. Everyone else I know has never had a positive biopsy. In my small personal study, it again shows that it is more likely to be benign than cancerous.

      Third thing to do: stay off this forum and do not search anything about melanoma online. That will only make your anxiety worse, and there is no reason to put your body through so much stress for such a small chance. Worry only when worry is warranted.

      Take care,

        • January 6, 2017 at 12:03 am
        SaraBear88
        Participant
        I’m definitely learning that Google is a bad thing but at the same time if I hadn’t I wouldn’t even know melanoma could be flesh colored or pink . So basically since it’s on my thigh the lymph nodes on my lower body would swell first ? Did you have the spot for many years before they found it ? Mine is just a pink spot about the size of a dime , it’s not raised , scaly , it doesn’t itch and it doesn’t bleed , it looks like a scar but I don’t remember it being there which is the scary part. I’ve never kept track of spot on my body but I’m definitely going to start. I’ve just had so many health issues in the last year it has me on edge . My skin isn’t fair , I’m naturally darker completed not that that would make any difference and I have dark eyes and dark hair and I don’t burn easily . So even with that type of melanoma spots are more likely to be benign than cancerous even if they appeared on their own ?
        • January 6, 2017 at 1:04 am
        Janner
        Participant

        If your lesion is on your legs, the groin lymph nodes will be the first affected.  Neck/arm/clavicle are not the right location.  In addition, tender nodes are typically not cancer – hard and unmovable are more suspect.  It's unlikely this lesion on your leg is amelanotic melanoma.  Even for melanoma, that's rare.  Of course, no one can say never but we go with the odds here and the odds are against this being melanoma and also against your lymph nodes being related to this.

        TAKE PICTURES.  Take pictures of your body now.  Then you have a reference – a baseline – to compare against later.  It's good to see a derm (everyone should) but I would absolutely not spend any time worrying about this let alone googling things related to melanoma.  Googling is not your friend when all it will do is inflame your imagination.  You are going to see a derm, let it go until then.

        • January 6, 2017 at 1:14 am
        SaraBear88
        Participant
        Thank you , I have noticed google always pulls up the worst possible thing it could be for anything . I’m definitely going to start seeing a dermatologist regular after this and take pics of everything . I’m just praying it isn’t any form of melanoma but I will wait out to see what the derm says , I am going to have him remove alot of places when I go , the sight of any freckle or mole has me on edge now , I tend to get a bit OCD about things like this . Thank you for all of your help :). Praying for you as well in your battle with melanoma .
        • January 6, 2017 at 1:22 am
        Janner
        Participant

        Removing moles doesn't actually reduce your risk for melanoma since 50% of melanoma primaries arises from new lesions.  Your best line of defense is pictures and removing lesions that CHANGE.  If it isn't changing, no need to remove it.  I've had 3 melanoma primaries and I have baseline pictures.  I remove ONLY changing lesions.  I've been stage 1 for almost 25 years.  I'm high risk for more primary melanomas and I still only remove changing lesions. 

        • January 6, 2017 at 2:31 am
        SaraBear88
        Participant
        I just want a few of them removed for testing . So just because something has been on the skin for awhile and looks odd as long as it isn’t changing I shouldn’t worry too much about it ? I’m just worried mine has been there a long time and that it would be too late for them to help me at this point. I have an odd looking one on my hand too that I was told looks like a benign Nevus. It started as a black dot and then became a small round uniform circle that was greyish blue . It was super elevated. It appeared about 5 years ago and I never had it checked and I’m kicking myself over that one too . It never got bigger or changed color but it recently started shrinking snd getting lighter like it’s trying to vanish which I was told was normal but I’m unsure so that’s why I intially made this derm appointment .
        • January 6, 2017 at 2:31 am
        SaraBear88
        Participant
        I just want a few of them removed for testing . So just because something has been on the skin for awhile and looks odd as long as it isn’t changing I shouldn’t worry too much about it ? I’m just worried mine has been there a long time and that it would be too late for them to help me at this point. I have an odd looking one on my hand too that I was told looks like a benign Nevus. It started as a black dot and then became a small round uniform circle that was greyish blue . It was super elevated. It appeared about 5 years ago and I never had it checked and I’m kicking myself over that one too . It never got bigger or changed color but it recently started shrinking snd getting lighter like it’s trying to vanish which I was told was normal but I’m unsure so that’s why I intially made this derm appointment .
        • January 6, 2017 at 2:31 am
        SaraBear88
        Participant
        I just want a few of them removed for testing . So just because something has been on the skin for awhile and looks odd as long as it isn’t changing I shouldn’t worry too much about it ? I’m just worried mine has been there a long time and that it would be too late for them to help me at this point. I have an odd looking one on my hand too that I was told looks like a benign Nevus. It started as a black dot and then became a small round uniform circle that was greyish blue . It was super elevated. It appeared about 5 years ago and I never had it checked and I’m kicking myself over that one too . It never got bigger or changed color but it recently started shrinking snd getting lighter like it’s trying to vanish which I was told was normal but I’m unsure so that’s why I intially made this derm appointment .
        • January 6, 2017 at 1:22 am
        Janner
        Participant

        Removing moles doesn't actually reduce your risk for melanoma since 50% of melanoma primaries arises from new lesions.  Your best line of defense is pictures and removing lesions that CHANGE.  If it isn't changing, no need to remove it.  I've had 3 melanoma primaries and I have baseline pictures.  I remove ONLY changing lesions.  I've been stage 1 for almost 25 years.  I'm high risk for more primary melanomas and I still only remove changing lesions. 

        • January 6, 2017 at 1:22 am
        Janner
        Participant

        Removing moles doesn't actually reduce your risk for melanoma since 50% of melanoma primaries arises from new lesions.  Your best line of defense is pictures and removing lesions that CHANGE.  If it isn't changing, no need to remove it.  I've had 3 melanoma primaries and I have baseline pictures.  I remove ONLY changing lesions.  I've been stage 1 for almost 25 years.  I'm high risk for more primary melanomas and I still only remove changing lesions. 

        • January 6, 2017 at 1:14 am
        SaraBear88
        Participant
        Thank you , I have noticed google always pulls up the worst possible thing it could be for anything . I’m definitely going to start seeing a dermatologist regular after this and take pics of everything . I’m just praying it isn’t any form of melanoma but I will wait out to see what the derm says , I am going to have him remove alot of places when I go , the sight of any freckle or mole has me on edge now , I tend to get a bit OCD about things like this . Thank you for all of your help :). Praying for you as well in your battle with melanoma .
        • January 6, 2017 at 1:14 am
        SaraBear88
        Participant
        Thank you , I have noticed google always pulls up the worst possible thing it could be for anything . I’m definitely going to start seeing a dermatologist regular after this and take pics of everything . I’m just praying it isn’t any form of melanoma but I will wait out to see what the derm says , I am going to have him remove alot of places when I go , the sight of any freckle or mole has me on edge now , I tend to get a bit OCD about things like this . Thank you for all of your help :). Praying for you as well in your battle with melanoma .
        • January 6, 2017 at 1:04 am
        Janner
        Participant

        If your lesion is on your legs, the groin lymph nodes will be the first affected.  Neck/arm/clavicle are not the right location.  In addition, tender nodes are typically not cancer – hard and unmovable are more suspect.  It's unlikely this lesion on your leg is amelanotic melanoma.  Even for melanoma, that's rare.  Of course, no one can say never but we go with the odds here and the odds are against this being melanoma and also against your lymph nodes being related to this.

        TAKE PICTURES.  Take pictures of your body now.  Then you have a reference – a baseline – to compare against later.  It's good to see a derm (everyone should) but I would absolutely not spend any time worrying about this let alone googling things related to melanoma.  Googling is not your friend when all it will do is inflame your imagination.  You are going to see a derm, let it go until then.

        • January 6, 2017 at 1:04 am
        Janner
        Participant

        If your lesion is on your legs, the groin lymph nodes will be the first affected.  Neck/arm/clavicle are not the right location.  In addition, tender nodes are typically not cancer – hard and unmovable are more suspect.  It's unlikely this lesion on your leg is amelanotic melanoma.  Even for melanoma, that's rare.  Of course, no one can say never but we go with the odds here and the odds are against this being melanoma and also against your lymph nodes being related to this.

        TAKE PICTURES.  Take pictures of your body now.  Then you have a reference – a baseline – to compare against later.  It's good to see a derm (everyone should) but I would absolutely not spend any time worrying about this let alone googling things related to melanoma.  Googling is not your friend when all it will do is inflame your imagination.  You are going to see a derm, let it go until then.

        • January 6, 2017 at 12:03 am
        SaraBear88
        Participant
        I’m definitely learning that Google is a bad thing but at the same time if I hadn’t I wouldn’t even know melanoma could be flesh colored or pink . So basically since it’s on my thigh the lymph nodes on my lower body would swell first ? Did you have the spot for many years before they found it ? Mine is just a pink spot about the size of a dime , it’s not raised , scaly , it doesn’t itch and it doesn’t bleed , it looks like a scar but I don’t remember it being there which is the scary part. I’ve never kept track of spot on my body but I’m definitely going to start. I’ve just had so many health issues in the last year it has me on edge . My skin isn’t fair , I’m naturally darker completed not that that would make any difference and I have dark eyes and dark hair and I don’t burn easily . So even with that type of melanoma spots are more likely to be benign than cancerous even if they appeared on their own ?
        • January 6, 2017 at 12:03 am
        SaraBear88
        Participant
        I’m definitely learning that Google is a bad thing but at the same time if I hadn’t I wouldn’t even know melanoma could be flesh colored or pink . So basically since it’s on my thigh the lymph nodes on my lower body would swell first ? Did you have the spot for many years before they found it ? Mine is just a pink spot about the size of a dime , it’s not raised , scaly , it doesn’t itch and it doesn’t bleed , it looks like a scar but I don’t remember it being there which is the scary part. I’ve never kept track of spot on my body but I’m definitely going to start. I’ve just had so many health issues in the last year it has me on edge . My skin isn’t fair , I’m naturally darker completed not that that would make any difference and I have dark eyes and dark hair and I don’t burn easily . So even with that type of melanoma spots are more likely to be benign than cancerous even if they appeared on their own ?
      • January 5, 2017 at 11:35 pm
      jennunicorn
      Participant

      First thing to do: take a deep breath. 

      Second thing: remember that it is more likely to be nothing than to be cancerous. Always remember that the chance of it being benign is always higher.

      Lymph nodes swell for a bunch of reasons, it's that time of year when all the germs and viruses are floating around, so it is more likely that your lymph nodes got swollen from something it was fighting off.. not cancer.

      If the spot is on your thigh, then it is highly unlikely lymph nodes in your upper body would swell in relation. 

      Try and keep yourself occupied with things to calm your anxiety. I have many family members and friends who have had many different spots removed and biopsied on their skin.. and only 2 had melanoma… and it was stage 0 which means it didn't even go beyond the top layer of skin. Many years later they've never dealt with it again. Everyone else I know has never had a positive biopsy. In my small personal study, it again shows that it is more likely to be benign than cancerous.

      Third thing to do: stay off this forum and do not search anything about melanoma online. That will only make your anxiety worse, and there is no reason to put your body through so much stress for such a small chance. Worry only when worry is warranted.

      Take care,

      • January 5, 2017 at 11:35 pm
      jennunicorn
      Participant

      First thing to do: take a deep breath. 

      Second thing: remember that it is more likely to be nothing than to be cancerous. Always remember that the chance of it being benign is always higher.

      Lymph nodes swell for a bunch of reasons, it's that time of year when all the germs and viruses are floating around, so it is more likely that your lymph nodes got swollen from something it was fighting off.. not cancer.

      If the spot is on your thigh, then it is highly unlikely lymph nodes in your upper body would swell in relation. 

      Try and keep yourself occupied with things to calm your anxiety. I have many family members and friends who have had many different spots removed and biopsied on their skin.. and only 2 had melanoma… and it was stage 0 which means it didn't even go beyond the top layer of skin. Many years later they've never dealt with it again. Everyone else I know has never had a positive biopsy. In my small personal study, it again shows that it is more likely to be benign than cancerous.

      Third thing to do: stay off this forum and do not search anything about melanoma online. That will only make your anxiety worse, and there is no reason to put your body through so much stress for such a small chance. Worry only when worry is warranted.

      Take care,

      • January 6, 2017 at 10:42 pm
      Jubes
      Participant

      I had an amelanotic hutchinsons freckle removed from my arm in 2003. I had it for three years before anyone picked it up although I always asked my doctors about it. In 2014 I was diagnosed with stage 4 in my lungs with nothing in between. For some reason my doctors do not think the two are related but it pays to be cautious. It just looked like a piece of rough scaly pink skin and grew from tiny to around 3cm diameter when they removed it. 

      Anne-Louise 

        • January 6, 2017 at 11:49 pm
        SaraBear88
        Participant
        Oh goodness Anne-Louise that’s awful . What treatments do they give you ? Yes I have asked other doctors about my places but they all say they look fine and they are benign but I just want to make double sure. It has me a nervous wreck . Did they biopsy your freckle when they removed it or they just took it off ?
        • January 6, 2017 at 11:49 pm
        SaraBear88
        Participant
        Oh goodness Anne-Louise that’s awful . What treatments do they give you ? Yes I have asked other doctors about my places but they all say they look fine and they are benign but I just want to make double sure. It has me a nervous wreck . Did they biopsy your freckle when they removed it or they just took it off ?
        • January 6, 2017 at 11:49 pm
        SaraBear88
        Participant
        Oh goodness Anne-Louise that’s awful . What treatments do they give you ? Yes I have asked other doctors about my places but they all say they look fine and they are benign but I just want to make double sure. It has me a nervous wreck . Did they biopsy your freckle when they removed it or they just took it off ?
      • January 6, 2017 at 10:42 pm
      Jubes
      Participant

      I had an amelanotic hutchinsons freckle removed from my arm in 2003. I had it for three years before anyone picked it up although I always asked my doctors about it. In 2014 I was diagnosed with stage 4 in my lungs with nothing in between. For some reason my doctors do not think the two are related but it pays to be cautious. It just looked like a piece of rough scaly pink skin and grew from tiny to around 3cm diameter when they removed it. 

      Anne-Louise 

      • January 6, 2017 at 10:42 pm
      Jubes
      Participant

      I had an amelanotic hutchinsons freckle removed from my arm in 2003. I had it for three years before anyone picked it up although I always asked my doctors about it. In 2014 I was diagnosed with stage 4 in my lungs with nothing in between. For some reason my doctors do not think the two are related but it pays to be cautious. It just looked like a piece of rough scaly pink skin and grew from tiny to around 3cm diameter when they removed it. 

      Anne-Louise 

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