Advice on any surgeons who would remove tumours in liver lungs size 1.5 cm largest

› Forums › General Melanoma Community › Advice on any surgeons who would remove tumours in liver lungs size 1.5 cm largest

  • Post
    • September 23, 2015 at 3:59 pm
    Scooby123
    Participant

      It's a long story for me but when had melanoma removed in 2011 but GP kept saying for a year it was nothing I was then treated by a surgical team who said if it comes back it would by by your lymph nodes. We will check you every 3 months for 5 years. I was still not convinced it was clear but they said it was. I was checked every 3 months and on my 4 year i did on times attending checks complaining some thing was not right , but was told it will be my arthuritus playing up and everything was ok. I had a bowel problem which when I told my doctor who I was under he said well we will do a one off scan. Not sure he wanted but due to my other issue he did one. Then going to the appointment for results was told I had 3 tumours on liver 2 on lungs and lymph node involment . I was told no cure started me on ippi cus I do not have the braf gene. Ippi reduced tumours by 50% so I would think 1.5 would be my biggist tumour. Does anyone have surgeons that would remove them now they have shrunk or is it watch wait. I am having a second opinion at another hospital but advice from you guys would be appreciated . I feel I do not trust them anymore after what I have been through. Hope this makes sense 

      Scooby ❤️

      Just to add I was right from the start I was not clear and it went straight through my body not my lymph nodes. I had six mels at the bottom of my back inside my body not on skin .

       

       

       

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    • Replies
        • September 23, 2015 at 4:09 pm
        Bubbles
        Participant

          Hi Scooby,

          Not sure I follow entirely…but if liver mets are resectable, surgical removal to the extent possible, would probably be a good idea.  I do not have a specific surgeon to recommend, but any good melanoma center should have one who could give their opinion regarding that option. I would not watch and wait.  It sounds as though you had a partial response on ipi.  That is good!!  However, since it was not a total response, I don't see that there is any obstacle to your now proceeding to an anti-PD1 product…either Nivo/Opdivo or Pembro/Keytruda…in hopes of a complete response whether you end up having surgery or not!!  I hope you are being seen by a melanoma specialist…not just a general oncologist.  It makes a world of difference in the care you can attain.  I wish you my best.  Celeste

            • September 23, 2015 at 5:28 pm
            Scooby123
            Participant

              Hi Celeste , 

              he is an ongoligist who deals with head , neck, lungs , mel the consultant am seeing at another hospital deals with mel, lungs we do not have a consultant in UK who just deals with mel. I have been told that I will be scanned in 3 months and depending on that scan result if still no change I think they will just keep scanning till my tumours grow or have any more pop up. I just do not want to wait while they are smaller why not try remove them . 

              Thank you for your advice , you take care too x

              • September 23, 2015 at 10:36 pm
              Bubbles
              Participant

                Well, your oncs should be well versed in options since they do deal with melanoma.  So that's good.  Have they mentioned anti-PD1?  It is all a crazy mess, but it sounds like they are being attentive to your situation.  One other positive possibility is that sometimes when tumors respond to immunotherapy (whether ipi or anti-PD1) the part that remains on scans is frequently NOT active tissue.  So they may be thinking that is possible in your case since your tumors certainly got smaller.  Hang in there….and mind the gap!!!  c

                • September 24, 2015 at 4:10 pm
                Scooby123
                Participant

                  Yes they have mentioned keytruda too me  if need it. I was hoping if the tumours were small they might attemp to remove them . I am also hoping due to all my tumours shrank by 50% that they keep shrinking. Think that's why they want to watch wait had  2 scans after ippi now but he scanned me a month apart to make sure it was not just a first reaction to treatment then tumours start growing again.

                  thanks for your advice it means a lot.❤️

                  • September 24, 2015 at 4:10 pm
                  Scooby123
                  Participant

                    Yes they have mentioned keytruda too me  if need it. I was hoping if the tumours were small they might attemp to remove them . I am also hoping due to all my tumours shrank by 50% that they keep shrinking. Think that's why they want to watch wait had  2 scans after ippi now but he scanned me a month apart to make sure it was not just a first reaction to treatment then tumours start growing again.

                    thanks for your advice it means a lot.❤️

                    • September 24, 2015 at 4:10 pm
                    Scooby123
                    Participant

                      Yes they have mentioned keytruda too me  if need it. I was hoping if the tumours were small they might attemp to remove them . I am also hoping due to all my tumours shrank by 50% that they keep shrinking. Think that's why they want to watch wait had  2 scans after ippi now but he scanned me a month apart to make sure it was not just a first reaction to treatment then tumours start growing again.

                      thanks for your advice it means a lot.❤️

                      • September 23, 2015 at 10:36 pm
                      Bubbles
                      Participant

                        Well, your oncs should be well versed in options since they do deal with melanoma.  So that's good.  Have they mentioned anti-PD1?  It is all a crazy mess, but it sounds like they are being attentive to your situation.  One other positive possibility is that sometimes when tumors respond to immunotherapy (whether ipi or anti-PD1) the part that remains on scans is frequently NOT active tissue.  So they may be thinking that is possible in your case since your tumors certainly got smaller.  Hang in there….and mind the gap!!!  c

                        • September 23, 2015 at 10:36 pm
                        Bubbles
                        Participant

                          Well, your oncs should be well versed in options since they do deal with melanoma.  So that's good.  Have they mentioned anti-PD1?  It is all a crazy mess, but it sounds like they are being attentive to your situation.  One other positive possibility is that sometimes when tumors respond to immunotherapy (whether ipi or anti-PD1) the part that remains on scans is frequently NOT active tissue.  So they may be thinking that is possible in your case since your tumors certainly got smaller.  Hang in there….and mind the gap!!!  c

                          • September 23, 2015 at 5:28 pm
                          Scooby123
                          Participant

                            Hi Celeste , 

                            he is an ongoligist who deals with head , neck, lungs , mel the consultant am seeing at another hospital deals with mel, lungs we do not have a consultant in UK who just deals with mel. I have been told that I will be scanned in 3 months and depending on that scan result if still no change I think they will just keep scanning till my tumours grow or have any more pop up. I just do not want to wait while they are smaller why not try remove them . 

                            Thank you for your advice , you take care too x

                            • September 23, 2015 at 5:28 pm
                            Scooby123
                            Participant

                              Hi Celeste , 

                              he is an ongoligist who deals with head , neck, lungs , mel the consultant am seeing at another hospital deals with mel, lungs we do not have a consultant in UK who just deals with mel. I have been told that I will be scanned in 3 months and depending on that scan result if still no change I think they will just keep scanning till my tumours grow or have any more pop up. I just do not want to wait while they are smaller why not try remove them . 

                              Thank you for your advice , you take care too x

                            • September 23, 2015 at 4:09 pm
                            Bubbles
                            Participant

                              Hi Scooby,

                              Not sure I follow entirely…but if liver mets are resectable, surgical removal to the extent possible, would probably be a good idea.  I do not have a specific surgeon to recommend, but any good melanoma center should have one who could give their opinion regarding that option. I would not watch and wait.  It sounds as though you had a partial response on ipi.  That is good!!  However, since it was not a total response, I don't see that there is any obstacle to your now proceeding to an anti-PD1 product…either Nivo/Opdivo or Pembro/Keytruda…in hopes of a complete response whether you end up having surgery or not!!  I hope you are being seen by a melanoma specialist…not just a general oncologist.  It makes a world of difference in the care you can attain.  I wish you my best.  Celeste

                              • September 23, 2015 at 4:09 pm
                              Bubbles
                              Participant

                                Hi Scooby,

                                Not sure I follow entirely…but if liver mets are resectable, surgical removal to the extent possible, would probably be a good idea.  I do not have a specific surgeon to recommend, but any good melanoma center should have one who could give their opinion regarding that option. I would not watch and wait.  It sounds as though you had a partial response on ipi.  That is good!!  However, since it was not a total response, I don't see that there is any obstacle to your now proceeding to an anti-PD1 product…either Nivo/Opdivo or Pembro/Keytruda…in hopes of a complete response whether you end up having surgery or not!!  I hope you are being seen by a melanoma specialist…not just a general oncologist.  It makes a world of difference in the care you can attain.  I wish you my best.  Celeste

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