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once diagnosed is it always lurking?

Forums General Melanoma Community once diagnosed is it always lurking?

  • Post
    JC
    Participant

      I've read enough stories about people with melanomas 10, 15, 20 years ago that were removed with excision and then returned so many years later as metastatic.  To me this indicates that once you have melanoma, it's never really gone.  It's always somewhere in the body, dormant, and at some point many years later can "wake up" for whatever reason – compromised immune system, etc…  Is there any scientific evidence or studies that indicate one way or the other – that excision really does rid most people of the cancerous cells, or that once diagnosed it's always there?

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    • Replies
        LaurieGayle
        Participant

          Good question. I look forward to reading some educated responses.  My gut says that it's possible that the potential is there for future melanoma because we still have all that skin that has been damaged by the sun. In my case, it was found in one place and removed with clean edges. The sentinel lymph node was clear. Hence, the diagnosis for now is "no evidence of disease".  However, there's no guarantee that just because one lymph node is clear that another one isn't diseased. My thinking is that I'm clear today and I live one day at a time anyway, so it's all good. However, it would not surprise me to have melanoma raise its ugly head again. 

          As I say, this is just my opinion. I've not researched it enough to give an educated response.

           

          LaurieGayle
          Participant

            Good question. I look forward to reading some educated responses.  My gut says that it's possible that the potential is there for future melanoma because we still have all that skin that has been damaged by the sun. In my case, it was found in one place and removed with clean edges. The sentinel lymph node was clear. Hence, the diagnosis for now is "no evidence of disease".  However, there's no guarantee that just because one lymph node is clear that another one isn't diseased. My thinking is that I'm clear today and I live one day at a time anyway, so it's all good. However, it would not surprise me to have melanoma raise its ugly head again. 

            As I say, this is just my opinion. I've not researched it enough to give an educated response.

             

            LaurieGayle
            Participant

              Good question. I look forward to reading some educated responses.  My gut says that it's possible that the potential is there for future melanoma because we still have all that skin that has been damaged by the sun. In my case, it was found in one place and removed with clean edges. The sentinel lymph node was clear. Hence, the diagnosis for now is "no evidence of disease".  However, there's no guarantee that just because one lymph node is clear that another one isn't diseased. My thinking is that I'm clear today and I live one day at a time anyway, so it's all good. However, it would not surprise me to have melanoma raise its ugly head again. 

              As I say, this is just my opinion. I've not researched it enough to give an educated response.

               

              LaurieGayle
              Participant

                http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-after-follow-up

                Guess I could have looked this up before I wrote my reply. Here's one good article about it. Thanks for bringing this up. 

                LaurieGayle
                Participant

                  http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-after-follow-up

                  Guess I could have looked this up before I wrote my reply. Here's one good article about it. Thanks for bringing this up. 

                  LaurieGayle
                  Participant

                    http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-after-follow-up

                    Guess I could have looked this up before I wrote my reply. Here's one good article about it. Thanks for bringing this up. 

                    jennunicorn
                    Participant

                      Since melanoma can't be detected by a simple blood test and microscopic cells can't be seen in scans, it could be possible that there are tiny melanoma cells floating around and being kept in check by one's immune system after they've had a melanoma diagnosis.. or before. There's no way to know for sure. However, there are many more people that have had an early stage (0-2) removed and have never had a recurrence or metastatic involvement later on. Obviously, we don't hear from most people that are 10-30 years past their initial melanoma diagnosis, because they're just living life and not dealing with melanoma at all!

                      Since my diagnosis, I have had multiple friends tell me about their family members who had a melanoma removed and 20 years later are doing just fine and have never dealt with it again. It's something that I think, once diagnosed, we become much more aware of our bodies in order to catch any possible recurrence early. After a while, that anxiety of "what if" dies down a bit. It will always be somewhere in our minds, because, yes, there is that chance a recurrence could happen long past the "cancer free" moment. That doesn't mean it should haunt our lives and stop us from moving forward and living a full life. Since melanoma is so linked to our immune system, it seems logical that doing everything you can to keep a strong immune system should help in preventing a recurrence; diet, exercise, supplements, etc. 

                      Those are my thoughts on it, all the best to you,

                      jennunicorn
                      Participant

                        Since melanoma can't be detected by a simple blood test and microscopic cells can't be seen in scans, it could be possible that there are tiny melanoma cells floating around and being kept in check by one's immune system after they've had a melanoma diagnosis.. or before. There's no way to know for sure. However, there are many more people that have had an early stage (0-2) removed and have never had a recurrence or metastatic involvement later on. Obviously, we don't hear from most people that are 10-30 years past their initial melanoma diagnosis, because they're just living life and not dealing with melanoma at all!

                        Since my diagnosis, I have had multiple friends tell me about their family members who had a melanoma removed and 20 years later are doing just fine and have never dealt with it again. It's something that I think, once diagnosed, we become much more aware of our bodies in order to catch any possible recurrence early. After a while, that anxiety of "what if" dies down a bit. It will always be somewhere in our minds, because, yes, there is that chance a recurrence could happen long past the "cancer free" moment. That doesn't mean it should haunt our lives and stop us from moving forward and living a full life. Since melanoma is so linked to our immune system, it seems logical that doing everything you can to keep a strong immune system should help in preventing a recurrence; diet, exercise, supplements, etc. 

                        Those are my thoughts on it, all the best to you,

                        jennunicorn
                        Participant

                          Since melanoma can't be detected by a simple blood test and microscopic cells can't be seen in scans, it could be possible that there are tiny melanoma cells floating around and being kept in check by one's immune system after they've had a melanoma diagnosis.. or before. There's no way to know for sure. However, there are many more people that have had an early stage (0-2) removed and have never had a recurrence or metastatic involvement later on. Obviously, we don't hear from most people that are 10-30 years past their initial melanoma diagnosis, because they're just living life and not dealing with melanoma at all!

                          Since my diagnosis, I have had multiple friends tell me about their family members who had a melanoma removed and 20 years later are doing just fine and have never dealt with it again. It's something that I think, once diagnosed, we become much more aware of our bodies in order to catch any possible recurrence early. After a while, that anxiety of "what if" dies down a bit. It will always be somewhere in our minds, because, yes, there is that chance a recurrence could happen long past the "cancer free" moment. That doesn't mean it should haunt our lives and stop us from moving forward and living a full life. Since melanoma is so linked to our immune system, it seems logical that doing everything you can to keep a strong immune system should help in preventing a recurrence; diet, exercise, supplements, etc. 

                          Those are my thoughts on it, all the best to you,

                          Bradley75
                          Participant

                            I feel like i need to chime in here.  I agree 100% with the previous post that says we need to live our lives to the fullest.  I also agree that the anxiety fades in time and that living a life full of fear of recurrence is not the way to go.

                            I want to bring my story up here not to bring fear, but to shed light on recurrence.  Mine returned 8 years after my excision and sentinel node biopsy.  I lived those 8 years not in fear, but in vigilance.  I went to my derm regularly and was always trying to make sure I noticed anything that would be considered suspect.  One day I noticed a lump near my right armpit.  Given the fact that I have been trained to look for odd things that might or might not be recurrence, I had it checked out.  After that, I was diagnosed with metastatic melanoma.  I bring this up to stress the importance of paying attention to your body.  Fear and anxiety don't help or prevent this disease from showing up.  Taking the time to read these message boards, going to your dermatologist regularly, knowing your body and any changes that occur, etc. are the best tools we have.

                             

                            Bradley75
                            Participant

                              I feel like i need to chime in here.  I agree 100% with the previous post that says we need to live our lives to the fullest.  I also agree that the anxiety fades in time and that living a life full of fear of recurrence is not the way to go.

                              I want to bring my story up here not to bring fear, but to shed light on recurrence.  Mine returned 8 years after my excision and sentinel node biopsy.  I lived those 8 years not in fear, but in vigilance.  I went to my derm regularly and was always trying to make sure I noticed anything that would be considered suspect.  One day I noticed a lump near my right armpit.  Given the fact that I have been trained to look for odd things that might or might not be recurrence, I had it checked out.  After that, I was diagnosed with metastatic melanoma.  I bring this up to stress the importance of paying attention to your body.  Fear and anxiety don't help or prevent this disease from showing up.  Taking the time to read these message boards, going to your dermatologist regularly, knowing your body and any changes that occur, etc. are the best tools we have.

                               

                              Bradley75
                              Participant

                                I feel like i need to chime in here.  I agree 100% with the previous post that says we need to live our lives to the fullest.  I also agree that the anxiety fades in time and that living a life full of fear of recurrence is not the way to go.

                                I want to bring my story up here not to bring fear, but to shed light on recurrence.  Mine returned 8 years after my excision and sentinel node biopsy.  I lived those 8 years not in fear, but in vigilance.  I went to my derm regularly and was always trying to make sure I noticed anything that would be considered suspect.  One day I noticed a lump near my right armpit.  Given the fact that I have been trained to look for odd things that might or might not be recurrence, I had it checked out.  After that, I was diagnosed with metastatic melanoma.  I bring this up to stress the importance of paying attention to your body.  Fear and anxiety don't help or prevent this disease from showing up.  Taking the time to read these message boards, going to your dermatologist regularly, knowing your body and any changes that occur, etc. are the best tools we have.

                                 

                                JuTMSY4
                                Participant

                                  Scientifically, I think the answer is "it depends."  Truthfully, it is always lurking regardless of diagnosis because it could be there or it couldn't – but everyone has the potential for cancer and generally melanoma.

                                  The difference is, those who are diagnosed know it.  A blessing and a curse because you can be more vigilant with this knowledge, but of course, you are also constantly vigilant.  Someone once told me, there are statistics for everyone, but once you're diagnosed, you can do things to swing them in your favor.  

                                  JuTMSY4
                                  Participant

                                    Scientifically, I think the answer is "it depends."  Truthfully, it is always lurking regardless of diagnosis because it could be there or it couldn't – but everyone has the potential for cancer and generally melanoma.

                                    The difference is, those who are diagnosed know it.  A blessing and a curse because you can be more vigilant with this knowledge, but of course, you are also constantly vigilant.  Someone once told me, there are statistics for everyone, but once you're diagnosed, you can do things to swing them in your favor.  

                                    JuTMSY4
                                    Participant

                                      Scientifically, I think the answer is "it depends."  Truthfully, it is always lurking regardless of diagnosis because it could be there or it couldn't – but everyone has the potential for cancer and generally melanoma.

                                      The difference is, those who are diagnosed know it.  A blessing and a curse because you can be more vigilant with this knowledge, but of course, you are also constantly vigilant.  Someone once told me, there are statistics for everyone, but once you're diagnosed, you can do things to swing them in your favor.  

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