The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Amelanotic Melanoma

Forums General Melanoma Community Amelanotic Melanoma

  • Post
    jrervin0378
    Participant

      Hi!!!

      Hi!!! I was diagnosed back in 2009 with SSM on my right knee (1.08mm, SNB Neg), and of course been followed regularly ever since.  I had a spot removed the other day on my upper arm that my derm has kind of been watching off and on for some time.  It had grown about 1mm in width, so she wanted to take it off.  It was completely flat, pink, and this sounds odd, but if you were to stretch that skin around it, it would pretty much disappear.  And, it had been there for at least 6 years, if not longer.  Kind of reminded me of a birthmark, or scar.  Anyway, I get to googling and all of that other nutty behavoir, and come up with amelanotic melanoma.  Just curious to see if anyone has had on of these rare mels, and if so, what did it look like.  I'm a hot, freaked out mess right now waiting for the results!!!! Any insight would be great!!!!!!!!!!!:)    Thanks!!    Jenn

    Viewing 18 reply threads
    • Replies
        Teodora
        Guest

          Hi Jen

          My primary tumor/internal,3.5cm/ was a rare albino/white/ on the top of already being rare due to its location.I've had a recurrence ever since that was dark in color  but I was surprised to learn that  they come in whitsh, pinkish colors too   not only black or brown.That's being said they wouldnt know what  is it  until biopsied so do not freak out beforehand.

          Take care,

          Teodora
          Guest

            Hi Jen

            My primary tumor/internal,3.5cm/ was a rare albino/white/ on the top of already being rare due to its location.I've had a recurrence ever since that was dark in color  but I was surprised to learn that  they come in whitsh, pinkish colors too   not only black or brown.That's being said they wouldnt know what  is it  until biopsied so do not freak out beforehand.

            Take care,

            Lori C
            Participant

              The person I was caregiver for, Will, had an amelanotic melanoma.  It was on the back of his head, on the scalp, low.  When it was removed the surgeon did not think it was melanoma (until the biopsy came in).

               

              Lori

              Lori C
              Participant

                The person I was caregiver for, Will, had an amelanotic melanoma.  It was on the back of his head, on the scalp, low.  When it was removed the surgeon did not think it was melanoma (until the biopsy came in).

                 

                Lori

                Janner
                Participant

                  First off, it's uncommon to have more than one primary.  Only about 8% every do.  Second, it's uncommon to have a melanoma of a different type than you had before.  Never any absolutes, but still even rarer.

                  The thing that comes to my mind from your description is a dermatofibroma.  Benign skin tumors that are thought to be caused by bug bites.  I have some that are lightly pigmented and some that are skin colored, some are flat and some are more raised. 

                  Don't jump to any conclusions because, chances are, it's nothing to worry about!  Since when has googling (and all the nutty behavior) been a recipe for "peace of mind"???wink

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    First off, it's uncommon to have more than one primary.  Only about 8% every do.  Second, it's uncommon to have a melanoma of a different type than you had before.  Never any absolutes, but still even rarer.

                    The thing that comes to my mind from your description is a dermatofibroma.  Benign skin tumors that are thought to be caused by bug bites.  I have some that are lightly pigmented and some that are skin colored, some are flat and some are more raised. 

                    Don't jump to any conclusions because, chances are, it's nothing to worry about!  Since when has googling (and all the nutty behavior) been a recipe for "peace of mind"???wink

                    Best wishes,

                    Janner

                    MichaelFL
                    Participant

                      It would be highly unlikely to have two types of melanoma, and Amelanotic Melanoma is also rare to have as well, so that would make it double in your favor of this being something else.

                      A biopsy is the only way to tell for sure, but try to relax in the meantime as in doctor speak it is "highly unlikely" of being melanoma at all.

                      Let us know the results.

                      Michael

                      MichaelFL
                      Participant

                        It would be highly unlikely to have two types of melanoma, and Amelanotic Melanoma is also rare to have as well, so that would make it double in your favor of this being something else.

                        A biopsy is the only way to tell for sure, but try to relax in the meantime as in doctor speak it is "highly unlikely" of being melanoma at all.

                        Let us know the results.

                        Michael

                        alicia
                        Participant

                          HI Teodora, 

                          Janner and the rest are correct amelanotic is very rare and having mult primary are also rare so I would try to not freak until you hear back from your doctor but I too know this is easier said than done.  I am one of those strange people (so my derm and melanoma onc says) who has multiple primaries that are all amelanotic.  I have had 3 melanoma primaries and each have been amelanotic which is very very strange. the thing to look for (or at least with mine) is symptoms of itchiness or scaliness.  The first amelanotic melanoma looked like a dome shaped, size of a dime red bump on my hip and I had a positive sentinel node.  this melanoma would bleed and scab over.  the second melanoma I had was stage one 0.59mm and only a clark II but it was an itchy raised pink spot on the back of my right shoulder.  The third melanoma primary was over 2.3 mm and was itchy inflammed and grew quite fast on my lower back.  So i'd say the thing to look for is change and if they are itchy or scaley just from my experience.  I hope everything comes back great for you and try not to worry until you have to:-)

                           

                          Alicia

                          alicia
                          Participant

                            HI Teodora, 

                            Janner and the rest are correct amelanotic is very rare and having mult primary are also rare so I would try to not freak until you hear back from your doctor but I too know this is easier said than done.  I am one of those strange people (so my derm and melanoma onc says) who has multiple primaries that are all amelanotic.  I have had 3 melanoma primaries and each have been amelanotic which is very very strange. the thing to look for (or at least with mine) is symptoms of itchiness or scaliness.  The first amelanotic melanoma looked like a dome shaped, size of a dime red bump on my hip and I had a positive sentinel node.  this melanoma would bleed and scab over.  the second melanoma I had was stage one 0.59mm and only a clark II but it was an itchy raised pink spot on the back of my right shoulder.  The third melanoma primary was over 2.3 mm and was itchy inflammed and grew quite fast on my lower back.  So i'd say the thing to look for is change and if they are itchy or scaley just from my experience.  I hope everything comes back great for you and try not to worry until you have to:-)

                             

                            Alicia

                              alicia
                              Participant

                                sorry that note above is for Jenn oops;-)

                                alicia
                                Participant

                                  sorry that note above is for Jenn oops;-)

                                nnhood
                                Participant

                                  This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                  Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                  I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                  Matt

                                  nnhood
                                  Participant

                                    This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                    Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                    I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                    Matt

                                    nnhood
                                    Participant

                                      This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                      Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                      I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                      Matt

                                      nnhood
                                      Participant

                                        This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                        Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                        I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                        Matt

                                        nnhood
                                        Participant

                                          This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                          Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                          I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                          Matt

                                          nnhood
                                          Participant

                                            This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                            Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                            I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                            Matt

                                            nnhood
                                            Participant

                                              This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                              Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                              I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                              Matt

                                              nnhood
                                              Participant

                                                This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                                Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                                I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                                Matt

                                                nnhood
                                                Participant

                                                  This was the red mark on the side of my right buttock.  Just got results that it was a Melanoma, but had not spread vertically.  She said it's very good I got it at this early stage.  Going back in next week to have more skin excised and then after that, checkups every 3 months.

                                                  Looking online before actual diagnosis can be very misleading as I thought this was a dermatafibroma. It basically had been in the same spot for 3-4 months and hadn't gone away.  That's why I went in to get checked.  So always best to play it safe and get it checked out.

                                                  I had no idea about unpigmented melanomas or ones that were pink or red instead of black/brown.  Hope this image helps in some way and hope everyone stays healthy!

                                                  Matt

                                              Viewing 18 reply threads
                                              • You must be logged in to reply to this topic.
                                              About the MRF Patient Forum

                                              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                              The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                              Popular Topics