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Advice sought please. Diagnosed as Stage 4 malignant melanoma

Forums General Melanoma Community Advice sought please. Diagnosed as Stage 4 malignant melanoma

  • Post
    oldblue
    Participant

       

      Dear All.

      Last month I had what I thought was a wart removed frommy L thigh and it turns out it was a stage malignant melanoma. It was graded as Clarl Level 4 and Breslow depth 5mm. There is vascular involvement. Mitosis was scored at 5. My LDH blood test was normal.

      I then had a PET CT scan and the results were negative to tumour or mets.

      This week I had a lymphocytogram (agony) and ultrasound and the reports were good. It showed normal lymph in my groin and uptake from the primary into two sentinel nodes.

      I went to theatre two days ago and had a wide margin excision and removal the two sentinel nodes in my groin. I had another suspicious but not sinister mole removed as a precaution and for testing from my L cheek.

      I will receive the results from the procedures in two weeks.

      Is this how the disease picture progresses? My feeling is that I some good prognostics and some bad prognostics, but I am not sure if that is how it tends to go and that I am now following a well trodden path to my extinction a year or two from now. Or,is it possiblethat the initial histopathology report may have been over stated.

      I'd be grateful for any advice.

      With best wishes and thanks to all.

      Nigel.

       

       

       

    Viewing 11 reply threads
    • Replies
        Gene_S
        Participant

          First Clark 4 and Stage IV are two different things.  In most instances they don't even give you the Clark Level anymore.

          I have read where some have started with a much larger melanoma than yours and progressed to Stage IV and have lived many years so it might be good to wait for the remainder of the pathology to come back before jumping the gun.

          See a melanoma specialist if you can as they will be of more help.

          Gene_S
          Participant

            First Clark 4 and Stage IV are two different things.  In most instances they don't even give you the Clark Level anymore.

            I have read where some have started with a much larger melanoma than yours and progressed to Stage IV and have lived many years so it might be good to wait for the remainder of the pathology to come back before jumping the gun.

            See a melanoma specialist if you can as they will be of more help.

            Gene_S
            Participant

              First Clark 4 and Stage IV are two different things.  In most instances they don't even give you the Clark Level anymore.

              I have read where some have started with a much larger melanoma than yours and progressed to Stage IV and have lived many years so it might be good to wait for the remainder of the pathology to come back before jumping the gun.

              See a melanoma specialist if you can as they will be of more help.

                oldblue
                Participant

                   

                  Good advice!

                  I realise that I have not been staged yet and need to wait until the resultsof the wider excision and the SNB come back for that.

                  I'm with the melanoma institute in Sydney and they have been fantastic already.

                  Thanks,

                  Nigel.

                  oldblue
                  Participant

                     

                    Good advice!

                    I realise that I have not been staged yet and need to wait until the resultsof the wider excision and the SNB come back for that.

                    I'm with the melanoma institute in Sydney and they have been fantastic already.

                    Thanks,

                    Nigel.

                    oldblue
                    Participant

                       

                      Good advice!

                      I realise that I have not been staged yet and need to wait until the resultsof the wider excision and the SNB come back for that.

                      I'm with the melanoma institute in Sydney and they have been fantastic already.

                      Thanks,

                      Nigel.

                    lbkimball
                    Participant

                      I agree with the previous reply – please see a melanoma specialist if you can. It's worth traveling for.

                      One thing my oncologist always says is that melanoma is THE most unpredictable cancers, so don't look at survival rates or articles or anything if you can avoid it. Wait at least until you have a full, clear picture of what is going on in your body. 

                      Even if it is worst case scenario, there are so many new treatments that you should do your best to focus on that. 

                      Please let us know what your results have to say.

                      laura

                      lbkimball
                      Participant

                        I agree with the previous reply – please see a melanoma specialist if you can. It's worth traveling for.

                        One thing my oncologist always says is that melanoma is THE most unpredictable cancers, so don't look at survival rates or articles or anything if you can avoid it. Wait at least until you have a full, clear picture of what is going on in your body. 

                        Even if it is worst case scenario, there are so many new treatments that you should do your best to focus on that. 

                        Please let us know what your results have to say.

                        laura

                        lbkimball
                        Participant

                          I agree with the previous reply – please see a melanoma specialist if you can. It's worth traveling for.

                          One thing my oncologist always says is that melanoma is THE most unpredictable cancers, so don't look at survival rates or articles or anything if you can avoid it. Wait at least until you have a full, clear picture of what is going on in your body. 

                          Even if it is worst case scenario, there are so many new treatments that you should do your best to focus on that. 

                          Please let us know what your results have to say.

                          laura

                            oldblue
                            Participant

                               

                              Thank you Laura.

                              I get results in about 10 days or so. I will keep you posted.

                              Best,

                              Nigel.

                              oldblue
                              Participant

                                 

                                Thank you Laura.

                                I get results in about 10 days or so. I will keep you posted.

                                Best,

                                Nigel.

                                oldblue
                                Participant

                                   

                                  Thank you Laura.

                                  I get results in about 10 days or so. I will keep you posted.

                                  Best,

                                  Nigel.

                                ed williams
                                Participant

                                  Hi Nigel, I would have to agree with the other post about being stage 4. It sounds more like early days with sentinal nodes and all the fun of waiting on results so that you can be staged. If there is melanoma in the nodes you would then be in the stage 3 phase. I see that you are in Australia, I follow Jay Allen on face book http://www.sunbedban.com lots of great info on Melanoma in Australia. Best of luck with the sentinal nodes! Ed

                                  ed williams
                                  Participant

                                    Hi Nigel, I would have to agree with the other post about being stage 4. It sounds more like early days with sentinal nodes and all the fun of waiting on results so that you can be staged. If there is melanoma in the nodes you would then be in the stage 3 phase. I see that you are in Australia, I follow Jay Allen on face book http://www.sunbedban.com lots of great info on Melanoma in Australia. Best of luck with the sentinal nodes! Ed

                                      oldblue
                                      Participant

                                         

                                        Thank you Ed.

                                        I will make contact with Jay. He is doing a walk for melanoma awareness at present.

                                        Cheers,

                                        Nigel.

                                        oldblue
                                        Participant

                                           

                                          Thank you Ed.

                                          I will make contact with Jay. He is doing a walk for melanoma awareness at present.

                                          Cheers,

                                          Nigel.

                                          oldblue
                                          Participant

                                             

                                            Thank you Ed.

                                            I will make contact with Jay. He is doing a walk for melanoma awareness at present.

                                            Cheers,

                                            Nigel.

                                          ed williams
                                          Participant

                                            Hi Nigel, I would have to agree with the other post about being stage 4. It sounds more like early days with sentinal nodes and all the fun of waiting on results so that you can be staged. If there is melanoma in the nodes you would then be in the stage 3 phase. I see that you are in Australia, I follow Jay Allen on face book http://www.sunbedban.com lots of great info on Melanoma in Australia. Best of luck with the sentinal nodes! Ed

                                            vlmd1986
                                            Participant

                                              Hi Nigel, 

                                              I, too, was recently diagnosed with malignant melanoma after going to the dermatologist to have a "wart" removed. It turned out to be a "Spitzoid melanoma" with a Breslow's depth of 1.9mm. I haven't had any imaging done (except a chest x-ray), but I've already had my WLE and Sentinel Node removal–sentinal node came back positive for microscopic mets. I'm going back to the doctor this coming Thursday, so I'll know more about a plan of action then.

                                              Best of luck with everything–I know how nerve-wracking it is to be waiting for the path report! 

                                              Warm regards,

                                              Val

                                              vlmd1986
                                              Participant

                                                Hi Nigel, 

                                                I, too, was recently diagnosed with malignant melanoma after going to the dermatologist to have a "wart" removed. It turned out to be a "Spitzoid melanoma" with a Breslow's depth of 1.9mm. I haven't had any imaging done (except a chest x-ray), but I've already had my WLE and Sentinel Node removal–sentinal node came back positive for microscopic mets. I'm going back to the doctor this coming Thursday, so I'll know more about a plan of action then.

                                                Best of luck with everything–I know how nerve-wracking it is to be waiting for the path report! 

                                                Warm regards,

                                                Val

                                                  oldblue
                                                  Participant

                                                    Good luck Val.

                                                    My initial histo report showed a depth of 5mm and vascular involvement. I guess I might get lucky on the wider excision and the SNB but realistically, I doubt it.

                                                    Anyway, fingers crossed – for both of us.

                                                    Regards,

                                                    Nigel.

                                                    oldblue
                                                    Participant

                                                      Good luck Val.

                                                      My initial histo report showed a depth of 5mm and vascular involvement. I guess I might get lucky on the wider excision and the SNB but realistically, I doubt it.

                                                      Anyway, fingers crossed – for both of us.

                                                      Regards,

                                                      Nigel.

                                                      oldblue
                                                      Participant

                                                        it's been a while sohereis my update:

                                                        I had the total lymph node removal from my left groin – they found aother lymph nodewith melanoma in it. Postop, I had a serious wound infection and 5 PE's in my lungs. I was in hospital for five weeks. I'm graded at 3b.

                                                        Now, I have been offered a trial – the COMBI – AD trial (worth googling it). I am BRAF positive. Its randomised and placebo controlled so I have a 50% chanceof getting the sugar pills rather than the real thing. The real thing is dabfrenib and tramethnib combined.

                                                        Is anyone else onthis trial? I am in Australia.

                                                        Many thanks in advance.

                                                        Nigel

                                                         

                                                         

                                                         

                                                         

                                                         

                                                         

                                                        oldblue
                                                        Participant

                                                          it's been a while sohereis my update:

                                                          I had the total lymph node removal from my left groin – they found aother lymph nodewith melanoma in it. Postop, I had a serious wound infection and 5 PE's in my lungs. I was in hospital for five weeks. I'm graded at 3b.

                                                          Now, I have been offered a trial – the COMBI – AD trial (worth googling it). I am BRAF positive. Its randomised and placebo controlled so I have a 50% chanceof getting the sugar pills rather than the real thing. The real thing is dabfrenib and tramethnib combined.

                                                          Is anyone else onthis trial? I am in Australia.

                                                          Many thanks in advance.

                                                          Nigel

                                                           

                                                           

                                                           

                                                           

                                                           

                                                           

                                                          oldblue
                                                          Participant

                                                            it's been a while sohereis my update:

                                                            I had the total lymph node removal from my left groin – they found aother lymph nodewith melanoma in it. Postop, I had a serious wound infection and 5 PE's in my lungs. I was in hospital for five weeks. I'm graded at 3b.

                                                            Now, I have been offered a trial – the COMBI – AD trial (worth googling it). I am BRAF positive. Its randomised and placebo controlled so I have a 50% chanceof getting the sugar pills rather than the real thing. The real thing is dabfrenib and tramethnib combined.

                                                            Is anyone else onthis trial? I am in Australia.

                                                            Many thanks in advance.

                                                            Nigel

                                                             

                                                             

                                                             

                                                             

                                                             

                                                             

                                                            oldblue
                                                            Participant

                                                              Good luck Val.

                                                              My initial histo report showed a depth of 5mm and vascular involvement. I guess I might get lucky on the wider excision and the SNB but realistically, I doubt it.

                                                              Anyway, fingers crossed – for both of us.

                                                              Regards,

                                                              Nigel.

                                                            vlmd1986
                                                            Participant

                                                              Hi Nigel, 

                                                              I, too, was recently diagnosed with malignant melanoma after going to the dermatologist to have a "wart" removed. It turned out to be a "Spitzoid melanoma" with a Breslow's depth of 1.9mm. I haven't had any imaging done (except a chest x-ray), but I've already had my WLE and Sentinel Node removal–sentinal node came back positive for microscopic mets. I'm going back to the doctor this coming Thursday, so I'll know more about a plan of action then.

                                                              Best of luck with everything–I know how nerve-wracking it is to be waiting for the path report! 

                                                              Warm regards,

                                                              Val

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