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Previously Melanoma in right ear now Melanoma in right lung

Forums Cutaneous Melanoma Community Previously Melanoma in right ear now Melanoma in right lung

  • Post
    Wally
    Participant

      Hi all, I am from South Africa.

      I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

      Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
      Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

      Hi all, I am from South Africa.

      I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

      Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
      Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

      Subsequent CT Scan confirmed this but all blood and sputum tests were negative for cancer. Doctor advised me to wait 6 months and have scan repeated to see if any growth in lesion evident.

      Visited Oncologist for annual check-up following ear surgery and I told her of recent developments.
      She suggested a PET scan and this confirmed possible cancerous tumour.

      Surgery suggested and Metastasis Malignant Melanoma stage 4 removed April 2011 (3,5cm by 5 cm cut away). However, no signs of any spread identified.

      Saw Radiologist to discuss possible treatment and wait & see approach suggested due to lack of evidence that the mel had spread to any other part of my body. Will revisit in August for further X-ray and blood test.

      My concern is, will this spread or not. What I have read up so far indicates that stage 4 is incurable. However, if it has all been removed then surely this will not happen or am I wrong? Is there a possibility that it could already have spread but just does not show with the tests they do? The negative possibilities are freaking me out.

      Any input will be greatly appreciated or additional info supplied if required.

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        bcl
        Participant

          Hi there, I copied your post to the main bulletin board ( http://www.melanoma.org/community/off-topic-forum/previously-melanoma-right-ear-now-melanoma-right-lung) as you will likely not get many replies to your questions here on the off topic board.  Glad you found us, good luck to you! linda

          bcl
          Participant

            Hi there, I copied your post to the main bulletin board ( http://www.melanoma.org/community/off-topic-forum/previously-melanoma-right-ear-now-melanoma-right-lung) as you will likely not get many replies to your questions here on the off topic board.  Glad you found us, good luck to you! linda

            dian in spokane
            Participant

               

              your situation is complicated somewhat by the fact that you are in South America, where I doubt there are many clinical trials available . If here, yuou mmight have been offered a trial, which would have involved either taking that lung tumor out and having it tested for mutations on the BRAF gene, or leaving the tumor in and trying some drug to shrink it.

              Having said that, any time melanoma is surgerically resectable it should be done (in my opinion) If I'd been given the choice up here in the US, I would go almost automatically for the lung surgery

              having gone that way, even here in the US, your choices are limited for resected stage IV melanoma. Mostly it is just observation..scans, follow up tests

              there is certainly the possibilty that you will have Melanoma return again. Now that you have had this progression (to your lungs) even though it has been removed, there is likely some melanoma in your body hanging around waiting for the opportunity to colonize in a new area. THere's really no telling when or where that might be, so NOT WORRYING is a good idea..since it won;'t help. Rigorous followup is what you need.

              I do not know if there are any melanoma specialists or melanoma centers where you live, but if there IS.. it would be in your best benefit to go to such a place and make sure you take all of your records and have them reviewed. Those melanoma specialists are in much closer touch with what's going on in this fast growing field than your average general oncologists.

              In the meantime..good luck, and it's great news that they were able to remove it all from your lungs surgically. that's not always possible!

              welcome to the board,

              dian in spokane

              dian in spokane
              Participant

                 

                your situation is complicated somewhat by the fact that you are in South America, where I doubt there are many clinical trials available . If here, yuou mmight have been offered a trial, which would have involved either taking that lung tumor out and having it tested for mutations on the BRAF gene, or leaving the tumor in and trying some drug to shrink it.

                Having said that, any time melanoma is surgerically resectable it should be done (in my opinion) If I'd been given the choice up here in the US, I would go almost automatically for the lung surgery

                having gone that way, even here in the US, your choices are limited for resected stage IV melanoma. Mostly it is just observation..scans, follow up tests

                there is certainly the possibilty that you will have Melanoma return again. Now that you have had this progression (to your lungs) even though it has been removed, there is likely some melanoma in your body hanging around waiting for the opportunity to colonize in a new area. THere's really no telling when or where that might be, so NOT WORRYING is a good idea..since it won;'t help. Rigorous followup is what you need.

                I do not know if there are any melanoma specialists or melanoma centers where you live, but if there IS.. it would be in your best benefit to go to such a place and make sure you take all of your records and have them reviewed. Those melanoma specialists are in much closer touch with what's going on in this fast growing field than your average general oncologists.

                In the meantime..good luck, and it's great news that they were able to remove it all from your lungs surgically. that's not always possible!

                welcome to the board,

                dian in spokane

                  dian in spokane
                  Participant

                    oh..and PS:

                    as others have mentioned, you dropped this post on the Off Topic board. the "Bulletin Board' is the main board which has many more visitors. if you repost your post over there, you will get many more responses

                    d

                    dian in spokane
                    Participant

                      oh..and PS:

                      as others have mentioned, you dropped this post on the Off Topic board. the "Bulletin Board' is the main board which has many more visitors. if you repost your post over there, you will get many more responses

                      d

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