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ocular met from cutaneous?

Forums Ocular Melanoma Community ocular met from cutaneous?

  • Post
    Cid FLA
    Participant

      Hi All,

      It's my first time back since registration was required……..previously known as just "Cid".

      I'm stage IIIb for 6 yrs. now and recently a "freckle" on my retina was detected via a routine eye exam with retina photography. I am to go back in 3 mos. for another look.

      Apparently this is one potential indicator of ocular mel though not an uncommon finding. My question is "has anyone heard of cutaneous mel metastises to the eye?".

      Hi All,

      It's my first time back since registration was required……..previously known as just "Cid".

      I'm stage IIIb for 6 yrs. now and recently a "freckle" on my retina was detected via a routine eye exam with retina photography. I am to go back in 3 mos. for another look.

      Apparently this is one potential indicator of ocular mel though not an uncommon finding. My question is "has anyone heard of cutaneous mel metastises to the eye?".

      Also, for anyone with ocular mel………..how did it start? how are you now? how were you treated?

      Nice to see some familiar names and all the new ones remind me of what a valuable resource we have here.

      My best to you all…………Cid

    Viewing 5 reply threads
    • Replies
        MichaelFL
        Participant

          It is my understanding that these are two different types of melanoma and are not related. Very rare to have ocular, and even rarer to have both.

          If you feel the need, perhaps have an opthamologist look at it.

          Michael 

           

          MichaelFL
          Participant

            It is my understanding that these are two different types of melanoma and are not related. Very rare to have ocular, and even rarer to have both.

            If you feel the need, perhaps have an opthamologist look at it.

            Michael 

             

            Teodora
            Guest

              Hi Cid,

              superficial spreading melanoma is the most common type of melanoma, 70-80% of cases arising from a mole or skin

              Nodular accounts for 10% of melanoma cases and found in the same places as superficial spreading

              Lentigo melanoma is less common, seen in older people, from chronic exposure to the sun.

              Acral lentiginous occurs in all racial types, occurs in palms, soles, undersurface of the fingers and toes and under nails.

              Mucosal melanoma appears in mucous membranes of the body, anal-genital, mouth, etc. It is rare and cause unknown.

              I have cervical mucosal melanoma that is super duper rare and in league on its own;even the doctors are not sure how to grade me  but they agree that mucosal displays a totally different clinical  behaviour than cutaneous;I've had my golf ball size primary tumor on the uterus for /they said many/ years and it never invaded the nearby  lypmh nodes;it did almost bleed me to death though  but I've had a life saving hysterectomy and a second surgery  to remove tissue.I did have a reccurence near the surgery though/currently doing 25 rounds of radiation/ to secure the area of any residual melanoma stray cells.They will be also applying vaginal local radiation called breaky procedure/3 rounds/ in an attempt to arrest the spreading    inside and out.

              I would say ocular is similar as it is a wet/mucosal tissue/ melanoma.

              I would advise you to see a melanoma specialisst that has experience in mucosal melanoma.Best melanoma centers in US  are  Sloan Kettering,MD Anderson and Dana Farber.Do your research and know what applies to your specific case.

              Good Luck to you

              Teodora

              Teodora
              Guest

                Hi Cid,

                superficial spreading melanoma is the most common type of melanoma, 70-80% of cases arising from a mole or skin

                Nodular accounts for 10% of melanoma cases and found in the same places as superficial spreading

                Lentigo melanoma is less common, seen in older people, from chronic exposure to the sun.

                Acral lentiginous occurs in all racial types, occurs in palms, soles, undersurface of the fingers and toes and under nails.

                Mucosal melanoma appears in mucous membranes of the body, anal-genital, mouth, etc. It is rare and cause unknown.

                I have cervical mucosal melanoma that is super duper rare and in league on its own;even the doctors are not sure how to grade me  but they agree that mucosal displays a totally different clinical  behaviour than cutaneous;I've had my golf ball size primary tumor on the uterus for /they said many/ years and it never invaded the nearby  lypmh nodes;it did almost bleed me to death though  but I've had a life saving hysterectomy and a second surgery  to remove tissue.I did have a reccurence near the surgery though/currently doing 25 rounds of radiation/ to secure the area of any residual melanoma stray cells.They will be also applying vaginal local radiation called breaky procedure/3 rounds/ in an attempt to arrest the spreading    inside and out.

                I would say ocular is similar as it is a wet/mucosal tissue/ melanoma.

                I would advise you to see a melanoma specialisst that has experience in mucosal melanoma.Best melanoma centers in US  are  Sloan Kettering,MD Anderson and Dana Farber.Do your research and know what applies to your specific case.

                Good Luck to you

                Teodora

                Janner
                Participant

                  I have talked to several opthalmologists about this as I've had 3 primaries and many eye surgeries unrelated to melanoma.  All have diagnosed ocular melanoma, but none of their patients had cutaneous melanoma.  They are just two different beasts.  If your freckle (very common) were to turn into melanoma, it would not be a met from your cutaneous melanoma, it would be a new cancer.  Ocular melanoma is treated differently depending on how advanced.  It tends to metastasize directly to the organs.  It seems lungs are the primary spot but my memory might be wrong there. 

                  Certainly, it's always good to watch freckles anywhere.  But I wouldn't worry about your freckle being related to your current melanoma.

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    I have talked to several opthalmologists about this as I've had 3 primaries and many eye surgeries unrelated to melanoma.  All have diagnosed ocular melanoma, but none of their patients had cutaneous melanoma.  They are just two different beasts.  If your freckle (very common) were to turn into melanoma, it would not be a met from your cutaneous melanoma, it would be a new cancer.  Ocular melanoma is treated differently depending on how advanced.  It tends to metastasize directly to the organs.  It seems lungs are the primary spot but my memory might be wrong there. 

                    Certainly, it's always good to watch freckles anywhere.  But I wouldn't worry about your freckle being related to your current melanoma.

                    Best wishes,

                    Janner

                      MichaelFL
                      Participant

                        Liver.

                        MichaelFL
                        Participant

                          Liver.

                          Cid FLA
                          Participant

                            Most grateful for the responses. Very informative and reassuring. I suspected ocular and cutaneous mels were distant relatives at best but it's nice to hear it from others all the same.

                            Many Thanks……………Cid 

                            Cid FLA
                            Participant

                              Most grateful for the responses. Very informative and reassuring. I suspected ocular and cutaneous mels were distant relatives at best but it's nice to hear it from others all the same.

                              Many Thanks……………Cid 

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