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Just Diagnosed

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  • Post
    • September 8, 2016 at 3:22 pm
    Travis G.
    Participant

      I was recently diagnosed with melanoma. I had a WLE and SNB on 8/24/16. A week later I was told that out of the 4 nodes they removed that 3 were negative and 1 was positive for only microscopic isolated tumor cells. I was told that I was Stage 3 but that her recommendation for now was just to observe because the CLND and the other treatments were too harmful for just this small amount of cells. I have a CT scan scheduled in two weeks and am nervous about the results. Is the SNB a relaible way of staging or could the CT scan show more? The doctor does not seem to think anything will show on the scan but I'm not so sure. I feel perfectly fine but they tell me that doesn't mean anything. Any advice? Thanks.

    Viewing 8 reply threads
    • Replies
        • September 8, 2016 at 3:45 pm
        jennunicorn
        Participant

          You've gotten some good advice. You are stage 3A, which among the 3's is the best one to be. A full body scan is just routine, they always have to rule out spread to other organs. With having only 1 out of 4 nodes positive for micro involvement, it is very unlikely the scan will show anything. Try not to worry too much. There's tons of great advice and knowledge here for you. 

          All the best,

          • September 8, 2016 at 3:45 pm
          jennunicorn
          Participant

            You've gotten some good advice. You are stage 3A, which among the 3's is the best one to be. A full body scan is just routine, they always have to rule out spread to other organs. With having only 1 out of 4 nodes positive for micro involvement, it is very unlikely the scan will show anything. Try not to worry too much. There's tons of great advice and knowledge here for you. 

            All the best,

              • September 8, 2016 at 4:43 pm
              Travis G.
              Participant

                Thank you Jenn. I appreciate it.

                • September 8, 2016 at 4:43 pm
                Travis G.
                Participant

                  Thank you Jenn. I appreciate it.

                  • September 8, 2016 at 4:43 pm
                  Travis G.
                  Participant

                    Thank you Jenn. I appreciate it.

                  • September 8, 2016 at 3:45 pm
                  jennunicorn
                  Participant

                    You've gotten some good advice. You are stage 3A, which among the 3's is the best one to be. A full body scan is just routine, they always have to rule out spread to other organs. With having only 1 out of 4 nodes positive for micro involvement, it is very unlikely the scan will show anything. Try not to worry too much. There's tons of great advice and knowledge here for you. 

                    All the best,

                    • September 8, 2016 at 7:07 pm
                    laulamb
                    Participant

                      Travis, Sorry to hear you were recently diagnosed.  I am also Stage 3A.  I also had 1 lymph node positive and I had a PET Scan, CT Scan and MRI of the head and all were negative for mestastic melanoma.  (My thyroid lit up on my PET Scan turns out I had papillary thryoid cancer, totally unrelated to the melanoma).  Please look over my profile and send me a message if you would like to discuss. 

                      • September 8, 2016 at 7:07 pm
                      laulamb
                      Participant

                        Travis, Sorry to hear you were recently diagnosed.  I am also Stage 3A.  I also had 1 lymph node positive and I had a PET Scan, CT Scan and MRI of the head and all were negative for mestastic melanoma.  (My thyroid lit up on my PET Scan turns out I had papillary thryoid cancer, totally unrelated to the melanoma).  Please look over my profile and send me a message if you would like to discuss. 

                        • September 8, 2016 at 7:07 pm
                        laulamb
                        Participant

                          Travis, Sorry to hear you were recently diagnosed.  I am also Stage 3A.  I also had 1 lymph node positive and I had a PET Scan, CT Scan and MRI of the head and all were negative for mestastic melanoma.  (My thyroid lit up on my PET Scan turns out I had papillary thryoid cancer, totally unrelated to the melanoma).  Please look over my profile and send me a message if you would like to discuss. 

                          • September 8, 2016 at 9:22 pm
                          Aaron
                          Participant

                            I do not wish to raise fear however I would personally stay as aggressive as I could. I had one of my initial nodes come back dirty and was considered minuscule. I went ahead and had all 32 nodes from my groin removed and all were clean. 1 1/2 years later I became stage 4. I know this is against odds but I would remain vigilant and do everything I could to stay as aggressive as I could be. 

                            • September 8, 2016 at 9:22 pm
                            Aaron
                            Participant

                              I do not wish to raise fear however I would personally stay as aggressive as I could. I had one of my initial nodes come back dirty and was considered minuscule. I went ahead and had all 32 nodes from my groin removed and all were clean. 1 1/2 years later I became stage 4. I know this is against odds but I would remain vigilant and do everything I could to stay as aggressive as I could be. 

                              • September 8, 2016 at 9:22 pm
                              Aaron
                              Participant

                                I do not wish to raise fear however I would personally stay as aggressive as I could. I had one of my initial nodes come back dirty and was considered minuscule. I went ahead and had all 32 nodes from my groin removed and all were clean. 1 1/2 years later I became stage 4. I know this is against odds but I would remain vigilant and do everything I could to stay as aggressive as I could be. 

                                  • September 8, 2016 at 10:26 pm
                                  jennunicorn
                                  Participant

                                    Good example of not needing a full dissection as it is likely to not prevent progression. Starting a systemic adjuvant treatment, like Ipi, is probably the most aggressive route one in this position could take. 

                                    • September 8, 2016 at 10:26 pm
                                    jennunicorn
                                    Participant

                                      Good example of not needing a full dissection as it is likely to not prevent progression. Starting a systemic adjuvant treatment, like Ipi, is probably the most aggressive route one in this position could take. 

                                      • September 8, 2016 at 10:26 pm
                                      jennunicorn
                                      Participant

                                        Good example of not needing a full dissection as it is likely to not prevent progression. Starting a systemic adjuvant treatment, like Ipi, is probably the most aggressive route one in this position could take. 

                                        • September 8, 2016 at 10:45 pm
                                        Aaron
                                        Participant

                                          In my case this may be right

                                          • September 8, 2016 at 10:45 pm
                                          Aaron
                                          Participant

                                            In my case this may be right

                                            • September 8, 2016 at 10:45 pm
                                            Aaron
                                            Participant

                                              In my case this may be right

                                              • September 9, 2016 at 1:40 pm
                                              RaquelP
                                              Participant

                                                That's assuming he would have been an ipi responder. Same exact scenario with my Dad only when he became stage IV they put him on ipi and he progressed. Are the Anti PD1's approved for stage III?

                                                • September 9, 2016 at 1:40 pm
                                                RaquelP
                                                Participant

                                                  That's assuming he would have been an ipi responder. Same exact scenario with my Dad only when he became stage IV they put him on ipi and he progressed. Are the Anti PD1's approved for stage III?

                                                  • September 9, 2016 at 1:40 pm
                                                  RaquelP
                                                  Participant

                                                    That's assuming he would have been an ipi responder. Same exact scenario with my Dad only when he became stage IV they put him on ipi and he progressed. Are the Anti PD1's approved for stage III?

                                                    • September 9, 2016 at 2:44 pm
                                                    jennunicorn
                                                    Participant

                                                      Not yet, the PD-1's are currently in trial for the adjuvant setting. So, Ipi is the only approved option (that makes any sense) right now.

                                                      • September 9, 2016 at 2:44 pm
                                                      jennunicorn
                                                      Participant

                                                        Not yet, the PD-1's are currently in trial for the adjuvant setting. So, Ipi is the only approved option (that makes any sense) right now.

                                                        • September 9, 2016 at 2:44 pm
                                                        jennunicorn
                                                        Participant

                                                          Not yet, the PD-1's are currently in trial for the adjuvant setting. So, Ipi is the only approved option (that makes any sense) right now.

                                                          • September 8, 2016 at 11:19 pm
                                                          Travis G.
                                                          Participant

                                                            I am going up to Duke University to see a Melanoma specialist in a couple of weeks. I will see what she has to say. Thanks for the help!

                                                            • September 8, 2016 at 11:19 pm
                                                            Travis G.
                                                            Participant

                                                              I am going up to Duke University to see a Melanoma specialist in a couple of weeks. I will see what she has to say. Thanks for the help!

                                                              • September 8, 2016 at 11:19 pm
                                                              Travis G.
                                                              Participant

                                                                I am going up to Duke University to see a Melanoma specialist in a couple of weeks. I will see what she has to say. Thanks for the help!

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