stage 0 to stage IV in a year and half?

Forums General Melanoma Community stage 0 to stage IV in a year and half?

  • Post
    lizblin
    Participant

      I had a melanoma in situ removed by slo mohs surgery a year and 1/2 ago.  All margns were clear and have been going for my by yearly skin checks.  About a month ago,  I wound up in the er with severe stomach pain.  They did a abd CT and found nothing in my stomach, but nodules in my lungs.  They sent me for an additional full chest CT which indicated more nodules.  I saw the lung nodule specialist today and the "team" is convinced it is melanoma – awaiting biopsy.  I have no other systems, blood work is fine and no lymph nodes that were in the CT are enlarged.

      I find this incredibly hard to believe and am terrified!  I am a healthy active person and not ready to give up on life

      Anyone else have this experience?

       

      thanks

       

    Viewing 8 reply threads
    • Replies
        BrianP
        Participant

          I'm sorry you are going through this.  I can't recall hearing this exact scenario but I have heard similar stories but I don't want to jump ahead.  Is a biopsy scheduled? 

          You have every right to be terrified.  We've all been there.  I want to let you know there is a tremendous amount of hope for melanoma patients these days.  You may be looking at stage IV 5 year survival stats and just know those are obsolete.  5 years ago there wasn't the immunotherapy drugs we have today.  I'm stage IV and living life to the fullest and I'm not alone. 

          If it does turn out to be melanoma this board will be invaluable to you.  Engage, ask questions, and bounce ideas.  The collective knowledge on this board and the generosity in which people share is amazing.

          Good luck to you.

          Brian

           

          BrianP
          Participant

            I'm sorry you are going through this.  I can't recall hearing this exact scenario but I have heard similar stories but I don't want to jump ahead.  Is a biopsy scheduled? 

            You have every right to be terrified.  We've all been there.  I want to let you know there is a tremendous amount of hope for melanoma patients these days.  You may be looking at stage IV 5 year survival stats and just know those are obsolete.  5 years ago there wasn't the immunotherapy drugs we have today.  I'm stage IV and living life to the fullest and I'm not alone. 

            If it does turn out to be melanoma this board will be invaluable to you.  Engage, ask questions, and bounce ideas.  The collective knowledge on this board and the generosity in which people share is amazing.

            Good luck to you.

            Brian

             

            BrianP
            Participant

              I'm sorry you are going through this.  I can't recall hearing this exact scenario but I have heard similar stories but I don't want to jump ahead.  Is a biopsy scheduled? 

              You have every right to be terrified.  We've all been there.  I want to let you know there is a tremendous amount of hope for melanoma patients these days.  You may be looking at stage IV 5 year survival stats and just know those are obsolete.  5 years ago there wasn't the immunotherapy drugs we have today.  I'm stage IV and living life to the fullest and I'm not alone. 

              If it does turn out to be melanoma this board will be invaluable to you.  Engage, ask questions, and bounce ideas.  The collective knowledge on this board and the generosity in which people share is amazing.

              Good luck to you.

              Brian

               

              Rocco
              Participant

                I can appreciate how scary this is.  I first heard the words ' you have cancer' and only a week later was told it was Stage IV.  I had no symptoms and I felt fine.  They eventually found lung nodules.  It took several surgeries, radiation, IL-2 and some trials of immunotherapies (Ipilimumab), but eventually we got it.  I was originally diagnosed at Stage IV in Aug 2005.  In Feb 2009 I was NED (no evidence of disease) and have been cancer free since.  I've continued to work throughout it all, continue to pray daily and live life!

                Don't give up on life!  Find the best melanoma specialists you can.  Ask questions on this board/forum.  It was a lifeline for me in my early days of diagnosis and a great way to educate myself and make me a more informed advocate in my treatment discussions and decisions.

                Hang in there!  You are not alone here –

                -Rocco

                Stage IV in Aug 2005, NED in 2009 thanks to Ipilimumab

                Rocco
                Participant

                  I can appreciate how scary this is.  I first heard the words ' you have cancer' and only a week later was told it was Stage IV.  I had no symptoms and I felt fine.  They eventually found lung nodules.  It took several surgeries, radiation, IL-2 and some trials of immunotherapies (Ipilimumab), but eventually we got it.  I was originally diagnosed at Stage IV in Aug 2005.  In Feb 2009 I was NED (no evidence of disease) and have been cancer free since.  I've continued to work throughout it all, continue to pray daily and live life!

                  Don't give up on life!  Find the best melanoma specialists you can.  Ask questions on this board/forum.  It was a lifeline for me in my early days of diagnosis and a great way to educate myself and make me a more informed advocate in my treatment discussions and decisions.

                  Hang in there!  You are not alone here –

                  -Rocco

                  Stage IV in Aug 2005, NED in 2009 thanks to Ipilimumab

                  Rocco
                  Participant

                    I can appreciate how scary this is.  I first heard the words ' you have cancer' and only a week later was told it was Stage IV.  I had no symptoms and I felt fine.  They eventually found lung nodules.  It took several surgeries, radiation, IL-2 and some trials of immunotherapies (Ipilimumab), but eventually we got it.  I was originally diagnosed at Stage IV in Aug 2005.  In Feb 2009 I was NED (no evidence of disease) and have been cancer free since.  I've continued to work throughout it all, continue to pray daily and live life!

                    Don't give up on life!  Find the best melanoma specialists you can.  Ask questions on this board/forum.  It was a lifeline for me in my early days of diagnosis and a great way to educate myself and make me a more informed advocate in my treatment discussions and decisions.

                    Hang in there!  You are not alone here –

                    -Rocco

                    Stage IV in Aug 2005, NED in 2009 thanks to Ipilimumab

                      lizblin
                      Participant

                        thanks Rocco!  So glad things turned out so well for you

                        lizblin
                        Participant

                          thanks Rocco!  So glad things turned out so well for you

                          lizblin
                          Participant

                            thanks Rocco!  So glad things turned out so well for you

                          jade1111
                          Participant

                            First off I am so sorry you are dealing with this stressful situation!

                             

                            My mom had a mole removed from her leg around year and haff ago.. SNB was done and margins clear on WLE. Regular check ups.. well she had some swelling in her leg which we thought was due to the SNB as it had alwasy been a little swollen since they removed lymph.. turns out melanoma spread from 1 lymph into Adrenal and couple of areas on liver. It is very shocking.. just received the news. Having been trying to understand why they said it was so low risk but then this occured.. No Pet scans or imaging were recommended after the SNB.. Anyway we met with a specialist recently (May add she was seen by specialist in Melanoma before) anway he made that point that sometimes if the original mole is there for a while (in her case it was undetected and missed by Drs) that can sometimes influence why the metassis occurs despite everything else looking fine and being low risk.. that and the cells maybe in transit but remain undetectable.

                            Having spent the last week heavily researching options.. I agree with the other poster.. the advances in melanoma are amazing. I truly hope the best for you.. its shocking.. but seems there is much to explore. 

                             

                            In health and healing!

                            jade1111
                            Participant

                              First off I am so sorry you are dealing with this stressful situation!

                               

                              My mom had a mole removed from her leg around year and haff ago.. SNB was done and margins clear on WLE. Regular check ups.. well she had some swelling in her leg which we thought was due to the SNB as it had alwasy been a little swollen since they removed lymph.. turns out melanoma spread from 1 lymph into Adrenal and couple of areas on liver. It is very shocking.. just received the news. Having been trying to understand why they said it was so low risk but then this occured.. No Pet scans or imaging were recommended after the SNB.. Anyway we met with a specialist recently (May add she was seen by specialist in Melanoma before) anway he made that point that sometimes if the original mole is there for a while (in her case it was undetected and missed by Drs) that can sometimes influence why the metassis occurs despite everything else looking fine and being low risk.. that and the cells maybe in transit but remain undetectable.

                              Having spent the last week heavily researching options.. I agree with the other poster.. the advances in melanoma are amazing. I truly hope the best for you.. its shocking.. but seems there is much to explore. 

                               

                              In health and healing!

                              jade1111
                              Participant

                                First off I am so sorry you are dealing with this stressful situation!

                                 

                                My mom had a mole removed from her leg around year and haff ago.. SNB was done and margins clear on WLE. Regular check ups.. well she had some swelling in her leg which we thought was due to the SNB as it had alwasy been a little swollen since they removed lymph.. turns out melanoma spread from 1 lymph into Adrenal and couple of areas on liver. It is very shocking.. just received the news. Having been trying to understand why they said it was so low risk but then this occured.. No Pet scans or imaging were recommended after the SNB.. Anyway we met with a specialist recently (May add she was seen by specialist in Melanoma before) anway he made that point that sometimes if the original mole is there for a while (in her case it was undetected and missed by Drs) that can sometimes influence why the metassis occurs despite everything else looking fine and being low risk.. that and the cells maybe in transit but remain undetectable.

                                Having spent the last week heavily researching options.. I agree with the other poster.. the advances in melanoma are amazing. I truly hope the best for you.. its shocking.. but seems there is much to explore. 

                                 

                                In health and healing!

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