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Inevitable?

Forums General Melanoma Community Inevitable?

  • Post
    JC
    Participant

      I'm relatively newly diagnosed.  Seems like on the internet, everyone who ever had melanoma ends up eventually dying from it.  Is that the case?  Are there 30-40-50 year survival rates, or are there only 5 & 10 year rates because after that most patients pass away from it?

      I'm relatively newly diagnosed.  Seems like on the internet, everyone who ever had melanoma ends up eventually dying from it.  Is that the case?  Are there 30-40-50 year survival rates, or are there only 5 & 10 year rates because after that most patients pass away from it?

    Viewing 29 reply threads
    • Replies
        Lori C
        Participant

          You have to remember that most people who are posting on internet forums with concerns about melanoma treatment are at a more advanced stage of the disease.  There are many survivors of melanoma.

            awillett1991
            Participant
              I completely agree with Lori’s’assessment. Look up a recent post from Charlie C. I personally have a friend who is a stage 3c, 40 yr survivor. She has 11 grand kids. Anything is possible especially with the developments in melanoma treatment just in the last 1.5 yrs.
              awillett1991
              Participant
                I completely agree with Lori’s’assessment. Look up a recent post from Charlie C. I personally have a friend who is a stage 3c, 40 yr survivor. She has 11 grand kids. Anything is possible especially with the developments in melanoma treatment just in the last 1.5 yrs.
                awillett1991
                Participant
                  I completely agree with Lori’s’assessment. Look up a recent post from Charlie C. I personally have a friend who is a stage 3c, 40 yr survivor. She has 11 grand kids. Anything is possible especially with the developments in melanoma treatment just in the last 1.5 yrs.
                Lori C
                Participant

                  You have to remember that most people who are posting on internet forums with concerns about melanoma treatment are at a more advanced stage of the disease.  There are many survivors of melanoma.

                  Lori C
                  Participant

                    You have to remember that most people who are posting on internet forums with concerns about melanoma treatment are at a more advanced stage of the disease.  There are many survivors of melanoma.

                    Gene_S
                    Participant

                      What stage are you currently? Also what treatments have you had?  Where are you located and who is treating you?

                      Gene_S
                      Participant

                        What stage are you currently? Also what treatments have you had?  Where are you located and who is treating you?

                        Gene_S
                        Participant

                          What stage are you currently? Also what treatments have you had?  Where are you located and who is treating you?

                          Charlie S
                          Participant

                            Melanoma does not live ,thrive and exist on the internet.

                            It is a human condition, not a digital anomaly.

                            No, there are not 30-40-50 year survival rates because melanoma only in maybe the last ten years or so has been recognized as a "real" cancer.  Before that it was an orphan disease.

                            The real hard drive is how to derive information from the internet and apply it to the individual.  

                            And if you think death is the only outcome for melanoma :there exists the possibility of a recto-cranial inversion diagnosis as well.

                            Cheers,

                            Charlie S

                            Charlie S
                            Participant

                              Melanoma does not live ,thrive and exist on the internet.

                              It is a human condition, not a digital anomaly.

                              No, there are not 30-40-50 year survival rates because melanoma only in maybe the last ten years or so has been recognized as a "real" cancer.  Before that it was an orphan disease.

                              The real hard drive is how to derive information from the internet and apply it to the individual.  

                              And if you think death is the only outcome for melanoma :there exists the possibility of a recto-cranial inversion diagnosis as well.

                              Cheers,

                              Charlie S

                              Charlie S
                              Participant

                                Melanoma does not live ,thrive and exist on the internet.

                                It is a human condition, not a digital anomaly.

                                No, there are not 30-40-50 year survival rates because melanoma only in maybe the last ten years or so has been recognized as a "real" cancer.  Before that it was an orphan disease.

                                The real hard drive is how to derive information from the internet and apply it to the individual.  

                                And if you think death is the only outcome for melanoma :there exists the possibility of a recto-cranial inversion diagnosis as well.

                                Cheers,

                                Charlie S

                                ylkay
                                Participant

                                  The median age at diagnosis is around 60; the odds of enough 30 to 50 year survivors to do an analysis is remote. A majority will die of something before even 30 years are up.

                                    JC
                                    Participant

                                      But it's also the most common cancer diagnosed in those ages 24-29, and many in their 30s/40s as well.  So, what about long term survival rates for those age groups diagnosed?

                                      Lori C
                                      Participant

                                        It depends – on a lot of things.  There is obviously a fantastic "cure" rate for those diagnosed in situ.  And there are improving long term survivial rates for those diagnosed at later stages, in many cases.  However, "survival rates" are a statistic collected from a group after a long period.  As an individual fighting the illness. you are not a statistic.  You may well be a long term survivor.   One of my friends is stage four NED now for three years.   An early user and complete responder to ipilimumab. 

                                        Surivival statistics that you find on the internet also don't take into account new treatments and are based on previous groups of patients surveyed.    You can really only deal with your situation, your diagnosis, and not make assumptions about your own odds based on previous research done on groups.  In every group there are survivors, you may well be one of them.  People survived rabies – a handful, but it has been done.  And look at HIV – for a period, almost no one survived more than a few years, and now for many, it's a chronic disease that people are surviving for decades.

                                         

                                        JC
                                        Participant

                                          I guess the question is better stated as this:  Is there actually anyone "cured" – even at an early stage with surgery/WLE?  Is anyone totally and completely free of any cancer cells in their body after surgical excision at an early stage (0, 1A, 1B), or does everyone and diagnosed and treated necessarily still have potentially metastatic cancer cells somewhere in their body that may never cause a problem or may, depending on immune system, etc..?

                                          Janner
                                          Participant

                                            Yes, most early stages are "cured" with the WLE only.  Are there a percentage who have it return?  Yes.  But if you look at survival stats (always outdated) for early stages, the vast majority survive.  The internet will never be a representative sample for early stages.  Once most early stagers get over the shock of diagnosis, they move on NEVER to post again about their melanoma.  Why should they?  I spend absolutely no time worrying about a melanoma recurrence.  I'm 11 years out from my last (and deepest) primary.  I refuse to let melanoma have that power over me.  Since I've had 3 primaries, I watch my skin for something "different" but I spend absolutely no time worrying about any of it.  What will worrying change?  I can't tell you the number of early stagers who've come and gone from this site in the 11 years I've been here.  Do a few return?  Yes.  Most are long gone off living their lives which is how it should be.  This site will never give you a sense of perspective – the internet is not the real world!

                                            Janner

                                            Stage IB since 1992, 3 MM primaries

                                            Janner
                                            Participant

                                              Yes, most early stages are "cured" with the WLE only.  Are there a percentage who have it return?  Yes.  But if you look at survival stats (always outdated) for early stages, the vast majority survive.  The internet will never be a representative sample for early stages.  Once most early stagers get over the shock of diagnosis, they move on NEVER to post again about their melanoma.  Why should they?  I spend absolutely no time worrying about a melanoma recurrence.  I'm 11 years out from my last (and deepest) primary.  I refuse to let melanoma have that power over me.  Since I've had 3 primaries, I watch my skin for something "different" but I spend absolutely no time worrying about any of it.  What will worrying change?  I can't tell you the number of early stagers who've come and gone from this site in the 11 years I've been here.  Do a few return?  Yes.  Most are long gone off living their lives which is how it should be.  This site will never give you a sense of perspective – the internet is not the real world!

                                              Janner

                                              Stage IB since 1992, 3 MM primaries

                                              Janner
                                              Participant

                                                Yes, most early stages are "cured" with the WLE only.  Are there a percentage who have it return?  Yes.  But if you look at survival stats (always outdated) for early stages, the vast majority survive.  The internet will never be a representative sample for early stages.  Once most early stagers get over the shock of diagnosis, they move on NEVER to post again about their melanoma.  Why should they?  I spend absolutely no time worrying about a melanoma recurrence.  I'm 11 years out from my last (and deepest) primary.  I refuse to let melanoma have that power over me.  Since I've had 3 primaries, I watch my skin for something "different" but I spend absolutely no time worrying about any of it.  What will worrying change?  I can't tell you the number of early stagers who've come and gone from this site in the 11 years I've been here.  Do a few return?  Yes.  Most are long gone off living their lives which is how it should be.  This site will never give you a sense of perspective – the internet is not the real world!

                                                Janner

                                                Stage IB since 1992, 3 MM primaries

                                                JC
                                                Participant

                                                  I guess the question is better stated as this:  Is there actually anyone "cured" – even at an early stage with surgery/WLE?  Is anyone totally and completely free of any cancer cells in their body after surgical excision at an early stage (0, 1A, 1B), or does everyone and diagnosed and treated necessarily still have potentially metastatic cancer cells somewhere in their body that may never cause a problem or may, depending on immune system, etc..?

                                                  JC
                                                  Participant

                                                    I guess the question is better stated as this:  Is there actually anyone "cured" – even at an early stage with surgery/WLE?  Is anyone totally and completely free of any cancer cells in their body after surgical excision at an early stage (0, 1A, 1B), or does everyone and diagnosed and treated necessarily still have potentially metastatic cancer cells somewhere in their body that may never cause a problem or may, depending on immune system, etc..?

                                                    Laurie from maine
                                                    Participant

                                                      I worry that you have now filled your life with statistics and worry and sometimes too much research can make you more anxious.  I dont know your history or stage, but I would strongly suggest if you are stage I or 2 to try to wean yourself a little from this site.  If you are stage 1 or 2 the melanoma international site has a forum specifically for those stages that might be a better place to ask questions and see how people coping with same stage as you are do it.    As others have said this forum tends to be later stage people helping each other with research, hope and support but it can be overwhelming for early stage people.

                                                      This site is full of courageous amazing people who fight with all they have.  I have learned soo much from all of them. The biggest thing I have learned is that EVERYday every moment is precious and if we fill it with worry then we have given that day up  to cancer and in my mind that is letting cancer win and rob you of that day,  none of us want to do that.  I have learned take everyday that you feel good and try to enjoy it, go out and enjoy the people and life you have!!  NOONE knows what will happen to them.

                                                      I know it is not easy to move cancer to the back of your head, and I am not saying any of us are able to do that well but I do try, I hope in time you can do that. 

                                                      take care

                                                      laurie from maine

                                                      JC
                                                      Participant

                                                        Ok, thanks.  Any physiological/biological info on the question about early stage mel? I appreciate the mental health suggestions, etc. . but also would appreciate any scientific info as well about the disease 

                                                        becky15
                                                        Participant

                                                          Cohanja, you have been reassured time and time again on the MIF boards.  You have a 0.3mm melanoma with no mitoses and radial growth stage.  Extremely low risk and I am sure that most people on this board would love to be in your position compared with their own.

                                                          JC
                                                          Participant

                                                            Guess you can't trust the Bulletin Board information, "Please note: The bulletin board allows you to post anonymously, and your identity will be kept hidden from the community."

                                                            JC
                                                            Participant

                                                              Guess you can't trust the Bulletin Board information, "Please note: The bulletin board allows you to post anonymously, and your identity will be kept hidden from the community."

                                                              JC
                                                              Participant

                                                                Guess you can't trust the Bulletin Board information, "Please note: The bulletin board allows you to post anonymously, and your identity will be kept hidden from the community."

                                                                becky15
                                                                Participant

                                                                  Cohanja, you have been reassured time and time again on the MIF boards.  You have a 0.3mm melanoma with no mitoses and radial growth stage.  Extremely low risk and I am sure that most people on this board would love to be in your position compared with their own.

                                                                  becky15
                                                                  Participant

                                                                    Cohanja, you have been reassured time and time again on the MIF boards.  You have a 0.3mm melanoma with no mitoses and radial growth stage.  Extremely low risk and I am sure that most people on this board would love to be in your position compared with their own.

                                                                    JC
                                                                    Participant

                                                                      Ok, thanks.  Any physiological/biological info on the question about early stage mel? I appreciate the mental health suggestions, etc. . but also would appreciate any scientific info as well about the disease 

                                                                      JC
                                                                      Participant

                                                                        Ok, thanks.  Any physiological/biological info on the question about early stage mel? I appreciate the mental health suggestions, etc. . but also would appreciate any scientific info as well about the disease 

                                                                        JC
                                                                        Participant

                                                                          Thanks, what was your initial Breslow/thickness when first diagnosed?

                                                                          JC
                                                                          Participant

                                                                            Thanks, what was your initial Breslow/thickness when first diagnosed?

                                                                            JC
                                                                            Participant

                                                                              Thanks, what was your initial Breslow/thickness when first diagnosed?

                                                                              Laurie from maine
                                                                              Participant

                                                                                I worry that you have now filled your life with statistics and worry and sometimes too much research can make you more anxious.  I dont know your history or stage, but I would strongly suggest if you are stage I or 2 to try to wean yourself a little from this site.  If you are stage 1 or 2 the melanoma international site has a forum specifically for those stages that might be a better place to ask questions and see how people coping with same stage as you are do it.    As others have said this forum tends to be later stage people helping each other with research, hope and support but it can be overwhelming for early stage people.

                                                                                This site is full of courageous amazing people who fight with all they have.  I have learned soo much from all of them. The biggest thing I have learned is that EVERYday every moment is precious and if we fill it with worry then we have given that day up  to cancer and in my mind that is letting cancer win and rob you of that day,  none of us want to do that.  I have learned take everyday that you feel good and try to enjoy it, go out and enjoy the people and life you have!!  NOONE knows what will happen to them.

                                                                                I know it is not easy to move cancer to the back of your head, and I am not saying any of us are able to do that well but I do try, I hope in time you can do that. 

                                                                                take care

                                                                                laurie from maine

                                                                                Laurie from maine
                                                                                Participant

                                                                                  I worry that you have now filled your life with statistics and worry and sometimes too much research can make you more anxious.  I dont know your history or stage, but I would strongly suggest if you are stage I or 2 to try to wean yourself a little from this site.  If you are stage 1 or 2 the melanoma international site has a forum specifically for those stages that might be a better place to ask questions and see how people coping with same stage as you are do it.    As others have said this forum tends to be later stage people helping each other with research, hope and support but it can be overwhelming for early stage people.

                                                                                  This site is full of courageous amazing people who fight with all they have.  I have learned soo much from all of them. The biggest thing I have learned is that EVERYday every moment is precious and if we fill it with worry then we have given that day up  to cancer and in my mind that is letting cancer win and rob you of that day,  none of us want to do that.  I have learned take everyday that you feel good and try to enjoy it, go out and enjoy the people and life you have!!  NOONE knows what will happen to them.

                                                                                  I know it is not easy to move cancer to the back of your head, and I am not saying any of us are able to do that well but I do try, I hope in time you can do that. 

                                                                                  take care

                                                                                  laurie from maine

                                                                                  Lori C
                                                                                  Participant

                                                                                    It depends – on a lot of things.  There is obviously a fantastic "cure" rate for those diagnosed in situ.  And there are improving long term survivial rates for those diagnosed at later stages, in many cases.  However, "survival rates" are a statistic collected from a group after a long period.  As an individual fighting the illness. you are not a statistic.  You may well be a long term survivor.   One of my friends is stage four NED now for three years.   An early user and complete responder to ipilimumab. 

                                                                                    Surivival statistics that you find on the internet also don't take into account new treatments and are based on previous groups of patients surveyed.    You can really only deal with your situation, your diagnosis, and not make assumptions about your own odds based on previous research done on groups.  In every group there are survivors, you may well be one of them.  People survived rabies – a handful, but it has been done.  And look at HIV – for a period, almost no one survived more than a few years, and now for many, it's a chronic disease that people are surviving for decades.

                                                                                     

                                                                                    Lori C
                                                                                    Participant

                                                                                      It depends – on a lot of things.  There is obviously a fantastic "cure" rate for those diagnosed in situ.  And there are improving long term survivial rates for those diagnosed at later stages, in many cases.  However, "survival rates" are a statistic collected from a group after a long period.  As an individual fighting the illness. you are not a statistic.  You may well be a long term survivor.   One of my friends is stage four NED now for three years.   An early user and complete responder to ipilimumab. 

                                                                                      Surivival statistics that you find on the internet also don't take into account new treatments and are based on previous groups of patients surveyed.    You can really only deal with your situation, your diagnosis, and not make assumptions about your own odds based on previous research done on groups.  In every group there are survivors, you may well be one of them.  People survived rabies – a handful, but it has been done.  And look at HIV – for a period, almost no one survived more than a few years, and now for many, it's a chronic disease that people are surviving for decades.

                                                                                       

                                                                                      JC
                                                                                      Participant

                                                                                        But it's also the most common cancer diagnosed in those ages 24-29, and many in their 30s/40s as well.  So, what about long term survival rates for those age groups diagnosed?

                                                                                        JC
                                                                                        Participant

                                                                                          But it's also the most common cancer diagnosed in those ages 24-29, and many in their 30s/40s as well.  So, what about long term survival rates for those age groups diagnosed?

                                                                                        ylkay
                                                                                        Participant

                                                                                          The median age at diagnosis is around 60; the odds of enough 30 to 50 year survivors to do an analysis is remote. A majority will die of something before even 30 years are up.

                                                                                          ylkay
                                                                                          Participant

                                                                                            The median age at diagnosis is around 60; the odds of enough 30 to 50 year survivors to do an analysis is remote. A majority will die of something before even 30 years are up.

                                                                                            mlbjab
                                                                                            Participant

                                                                                              A cure?  Let's not forget…LIFE is a terminal condition.

                                                                                              mlbjab
                                                                                              Participant

                                                                                                A cure?  Let's not forget…LIFE is a terminal condition.

                                                                                                mlbjab
                                                                                                Participant

                                                                                                  A cure?  Let's not forget…LIFE is a terminal condition.

                                                                                                  Charlie S
                                                                                                  Participant

                                                                                                    Because it seems this has became a post of numbers and statistics; let me add this:  Statistics relative to melanoma are only a reflection of what happened to a certain group of people in the past, and are in no way a reflection of what will happen to any one individual in the future.

                                                                                                     

                                                                                                    …read that again and say it out loud……………..Statistics relative to melanoma are only a reflection of what happened to a certain group of people in the past, and are in no way a reflection of what will happen to any one individual in the future.

                                                                                                    As a guy with a 2% chance of living , according to the numbers; turns out I am 100% living.

                                                                                                    Don't get all that wrapped up in the numbers; focus on living.

                                                                                                    Or not……………your choice, your chance.

                                                                                                    Charlie S

                                                                                                    Charlie S
                                                                                                    Participant

                                                                                                      Because it seems this has became a post of numbers and statistics; let me add this:  Statistics relative to melanoma are only a reflection of what happened to a certain group of people in the past, and are in no way a reflection of what will happen to any one individual in the future.

                                                                                                       

                                                                                                      …read that again and say it out loud……………..Statistics relative to melanoma are only a reflection of what happened to a certain group of people in the past, and are in no way a reflection of what will happen to any one individual in the future.

                                                                                                      As a guy with a 2% chance of living , according to the numbers; turns out I am 100% living.

                                                                                                      Don't get all that wrapped up in the numbers; focus on living.

                                                                                                      Or not……………your choice, your chance.

                                                                                                      Charlie S

                                                                                                      Charlie S
                                                                                                      Participant

                                                                                                        Because it seems this has became a post of numbers and statistics; let me add this:  Statistics relative to melanoma are only a reflection of what happened to a certain group of people in the past, and are in no way a reflection of what will happen to any one individual in the future.

                                                                                                         

                                                                                                        …read that again and say it out loud……………..Statistics relative to melanoma are only a reflection of what happened to a certain group of people in the past, and are in no way a reflection of what will happen to any one individual in the future.

                                                                                                        As a guy with a 2% chance of living , according to the numbers; turns out I am 100% living.

                                                                                                        Don't get all that wrapped up in the numbers; focus on living.

                                                                                                        Or not……………your choice, your chance.

                                                                                                        Charlie S

                                                                                                        JerryfromFauq
                                                                                                        Participant

                                                                                                          Not being a statistic, we are here fighting to change the statistics for the following group of patients (when we to will be part of the statistical database).  Most early stage people die from other than melanoma.  Two years ago Charlie introduced me to a friend of his that was stage IV and given little chance of any survival in 1990.  HE received treatment with IL-2 (which was not approved for melanoma until the late 1990's)  and seldom is seen around here.  He has been too busy living life for over twenty years since his last treatment for melanoma.  Will he make 40 years of survival after going to stage IV?  Who knows, Odds are great that it will not be melanoma that gets him before old age does!

                                                                                                              With the earlier age for many melanoma diagnosis nowadays, and with the advances the the past 7 years research is leading to, I fully expect that we will change the future statistics. 

                                                                                                          (Look at Charlie,) he and I keep looking for NED, but the scans keep finding tumors sitting there, so not even NED at stage IV, but we aren't saying that we are giving up on life and just waiting for melanoma to take us.  The way we live, we just might make it to old age? 
                                                                                                          (Watch out for horseback riding!
                                                                                                          (That was the last thng to kill me.  It also damaged a Stage IV lady (5 broken ribs, punctured lung, etc,) about her 4 year NED point.  For her 5 year NED celibration she then went skydiving.  She is still enjoying life.

                                                                                                          Enjoy life.  BE vigilant, but enjoy life, if not then MElanoma has already won.

                                                                                                          Sometimes I disagree with the statement that no one gets out of here alive.
                                                                                                          (Sorry Charlie!)  I'm not Jewish, but I read about a guy named Elijah that did (Even if my pastor does tell me that he doesn't think I'm in Elijah's category).

                                                                                                          JerryfromFauq
                                                                                                          Participant

                                                                                                            Not being a statistic, we are here fighting to change the statistics for the following group of patients (when we to will be part of the statistical database).  Most early stage people die from other than melanoma.  Two years ago Charlie introduced me to a friend of his that was stage IV and given little chance of any survival in 1990.  HE received treatment with IL-2 (which was not approved for melanoma until the late 1990's)  and seldom is seen around here.  He has been too busy living life for over twenty years since his last treatment for melanoma.  Will he make 40 years of survival after going to stage IV?  Who knows, Odds are great that it will not be melanoma that gets him before old age does!

                                                                                                                With the earlier age for many melanoma diagnosis nowadays, and with the advances the the past 7 years research is leading to, I fully expect that we will change the future statistics. 

                                                                                                            (Look at Charlie,) he and I keep looking for NED, but the scans keep finding tumors sitting there, so not even NED at stage IV, but we aren't saying that we are giving up on life and just waiting for melanoma to take us.  The way we live, we just might make it to old age? 
                                                                                                            (Watch out for horseback riding!
                                                                                                            (That was the last thng to kill me.  It also damaged a Stage IV lady (5 broken ribs, punctured lung, etc,) about her 4 year NED point.  For her 5 year NED celibration she then went skydiving.  She is still enjoying life.

                                                                                                            Enjoy life.  BE vigilant, but enjoy life, if not then MElanoma has already won.

                                                                                                            Sometimes I disagree with the statement that no one gets out of here alive.
                                                                                                            (Sorry Charlie!)  I'm not Jewish, but I read about a guy named Elijah that did (Even if my pastor does tell me that he doesn't think I'm in Elijah's category).

                                                                                                            JerryfromFauq
                                                                                                            Participant

                                                                                                              Not being a statistic, we are here fighting to change the statistics for the following group of patients (when we to will be part of the statistical database).  Most early stage people die from other than melanoma.  Two years ago Charlie introduced me to a friend of his that was stage IV and given little chance of any survival in 1990.  HE received treatment with IL-2 (which was not approved for melanoma until the late 1990's)  and seldom is seen around here.  He has been too busy living life for over twenty years since his last treatment for melanoma.  Will he make 40 years of survival after going to stage IV?  Who knows, Odds are great that it will not be melanoma that gets him before old age does!

                                                                                                                  With the earlier age for many melanoma diagnosis nowadays, and with the advances the the past 7 years research is leading to, I fully expect that we will change the future statistics. 

                                                                                                              (Look at Charlie,) he and I keep looking for NED, but the scans keep finding tumors sitting there, so not even NED at stage IV, but we aren't saying that we are giving up on life and just waiting for melanoma to take us.  The way we live, we just might make it to old age? 
                                                                                                              (Watch out for horseback riding!
                                                                                                              (That was the last thng to kill me.  It also damaged a Stage IV lady (5 broken ribs, punctured lung, etc,) about her 4 year NED point.  For her 5 year NED celibration she then went skydiving.  She is still enjoying life.

                                                                                                              Enjoy life.  BE vigilant, but enjoy life, if not then MElanoma has already won.

                                                                                                              Sometimes I disagree with the statement that no one gets out of here alive.
                                                                                                              (Sorry Charlie!)  I'm not Jewish, but I read about a guy named Elijah that did (Even if my pastor does tell me that he doesn't think I'm in Elijah's category).

                                                                                                              Dgentz
                                                                                                              Participant

                                                                                                                It's funny…I don't pay much attention to the numbers and stats and stages and percentages.  I'm not ignorant of them, but I choose to focus on me and my situation. Melanoma is a sneaky wench – I was almost at the 3 year NED mark when my nodes inflamed again. 

                                                                                                                My oncologist is fantastic – he'll give me the numbers if I want them, but the bottom line is that he's doing the best treatments he can for ME to get ME the longest, healthiest life we can.  Someone telling me my treatment has X% chance of working doesn't help me fight.  That's just me though. ๐Ÿ™‚ 

                                                                                                                I hope you can find some peace and good treatments/doctors to help you. 

                                                                                                                Dgentz
                                                                                                                Participant

                                                                                                                  It's funny…I don't pay much attention to the numbers and stats and stages and percentages.  I'm not ignorant of them, but I choose to focus on me and my situation. Melanoma is a sneaky wench – I was almost at the 3 year NED mark when my nodes inflamed again. 

                                                                                                                  My oncologist is fantastic – he'll give me the numbers if I want them, but the bottom line is that he's doing the best treatments he can for ME to get ME the longest, healthiest life we can.  Someone telling me my treatment has X% chance of working doesn't help me fight.  That's just me though. ๐Ÿ™‚ 

                                                                                                                  I hope you can find some peace and good treatments/doctors to help you. 

                                                                                                                  Dgentz
                                                                                                                  Participant

                                                                                                                    It's funny…I don't pay much attention to the numbers and stats and stages and percentages.  I'm not ignorant of them, but I choose to focus on me and my situation. Melanoma is a sneaky wench – I was almost at the 3 year NED mark when my nodes inflamed again. 

                                                                                                                    My oncologist is fantastic – he'll give me the numbers if I want them, but the bottom line is that he's doing the best treatments he can for ME to get ME the longest, healthiest life we can.  Someone telling me my treatment has X% chance of working doesn't help me fight.  That's just me though. ๐Ÿ™‚ 

                                                                                                                    I hope you can find some peace and good treatments/doctors to help you. 

                                                                                                                    sandywebb
                                                                                                                    Participant

                                                                                                                      I think there are actually very many long-term survivors out there. We just never hear or see them here because they move on. It's not cus they don't care about coming here it's just cus they are busy and maybe don't want to remind themselves of the tough times they may have endured. I kinda fall into that category. I was NED for 5 years and after visiting this site every day several times a day for about 3 years I kinda got out of the habit and would just not have the time to get on here. Had too many other things going on that I was able to do and I basically wanted no reminder at all of this Beast. Very recently  I had my 5 year scans and was floored that they saw a small nodule on my left lung and possible bone mets to my left hip and spine area soooo now I'm back here for support and information. So I do think there are A LOT of long-termers out there!!!   We just don't see them. Good Luck and Stay Positive!!!!!!

                                                                                                                        JC
                                                                                                                        Participant

                                                                                                                          Sorry to hear that.  Were you initially in situ or early Stage I?  And, now, 5 years later this?  See, that's what seems to happen more than what patients are told.  Doctors say, "dont' worry, you won't deal with this again", etc….  but I think that is a false sense of security.

                                                                                                                          JC
                                                                                                                          Participant

                                                                                                                            Sorry to hear that.  Were you initially in situ or early Stage I?  And, now, 5 years later this?  See, that's what seems to happen more than what patients are told.  Doctors say, "dont' worry, you won't deal with this again", etc….  but I think that is a false sense of security.

                                                                                                                            JC
                                                                                                                            Participant

                                                                                                                              Sorry to hear that.  Were you initially in situ or early Stage I?  And, now, 5 years later this?  See, that's what seems to happen more than what patients are told.  Doctors say, "dont' worry, you won't deal with this again", etc….  but I think that is a false sense of security.

                                                                                                                            sandywebb
                                                                                                                            Participant

                                                                                                                              I think there are actually very many long-term survivors out there. We just never hear or see them here because they move on. It's not cus they don't care about coming here it's just cus they are busy and maybe don't want to remind themselves of the tough times they may have endured. I kinda fall into that category. I was NED for 5 years and after visiting this site every day several times a day for about 3 years I kinda got out of the habit and would just not have the time to get on here. Had too many other things going on that I was able to do and I basically wanted no reminder at all of this Beast. Very recently  I had my 5 year scans and was floored that they saw a small nodule on my left lung and possible bone mets to my left hip and spine area soooo now I'm back here for support and information. So I do think there are A LOT of long-termers out there!!!   We just don't see them. Good Luck and Stay Positive!!!!!!

                                                                                                                              sandywebb
                                                                                                                              Participant

                                                                                                                                I think there are actually very many long-term survivors out there. We just never hear or see them here because they move on. It's not cus they don't care about coming here it's just cus they are busy and maybe don't want to remind themselves of the tough times they may have endured. I kinda fall into that category. I was NED for 5 years and after visiting this site every day several times a day for about 3 years I kinda got out of the habit and would just not have the time to get on here. Had too many other things going on that I was able to do and I basically wanted no reminder at all of this Beast. Very recently  I had my 5 year scans and was floored that they saw a small nodule on my left lung and possible bone mets to my left hip and spine area soooo now I'm back here for support and information. So I do think there are A LOT of long-termers out there!!!   We just don't see them. Good Luck and Stay Positive!!!!!!

                                                                                                                                Jamietk
                                                                                                                                Participant

                                                                                                                                  I think I can understand where you're coming from. As much as I believe in my faith in God and that we can be healed if it is his Will, I am also very much a numbers-person. Statistics speak to me. Not because I totally rely on them to drive my decisions and determine my comfort or worry levels. But because they are factual of what has happened. So I think I do understand the worry that is associated with the fact that my 10 year survival rate at the early edge of Stage IIA is about 69% (if memory serves me correctly). That said, I had my 7 year anniversary yesterday of having my melanoma removed. So far, so good. I go for my official checkup at MDA in November. After about the 4 or 5 year mark, my husband and I started talking about adoption and when I discussed it with my Dr., he told me I only had about a 2% to 3% chance of recurrence at that point. Sure, it could happen. And the numbers tell me that before 2015, I have a 31% chance of not being here. But I am still here 7 years later so I hope that gives you some hope.

                                                                                                                                    natasha
                                                                                                                                    Participant

                                                                                                                                      Jamietk !

                                                                                                                                           Congradulations on your NED anniversary !!!! We are planning adoption as well ,but I was diagnosed this year Jan only. We cannot have children naturally ( even before my diagnosys) , so I hope I will be fine. Mine was only 0.2 Breslow. I spoke with my Docs about adoption and they said go for it ,because of very low risk of dying of this cancer

                                                                                                                                      Jamietk
                                                                                                                                      Participant

                                                                                                                                        Natasha,

                                                                                                                                         

                                                                                                                                        We also could not biologically have children before melanoma. I am diabetic, have pcos, and last year was diagnosed with mild heart disease, and melanoma in 2005. We knew my health history/risks were significant for years so we always had kind of planned on adoption even before melanoma. Congrats to you on going the adoption route. Just my personal opinion, but with a dept of .2, I would not hesitate for a second to adopt, and I probably wouldn't wait that long. You have to do what is comfortable to you but you are right, your risks are extremely low of having further issues.

                                                                                                                                        natasha
                                                                                                                                        Participant

                                                                                                                                          Thanks Jamietk , for your support.

                                                                                                                                          We are just  3 months in adoption process ,we need to fly abroad to bring all paperwork and to attend solicitors ,because we are adopting abroad.

                                                                                                                                          My husband cannot have children because of serious accident in childhood (he was in coma for 2 days). We did IVF , it failed and I was diagnosed with melanoma straight away ,so Docs said I better not pregnant again in next 5 years.

                                                                                                                                          I wanted to adopt even before IVF , so now we are adopting !!!!!:)

                                                                                                                                          Good luck to your as well and hopefully we will be happy Mums soon !!!!!!!!!

                                                                                                                                          natasha
                                                                                                                                          Participant

                                                                                                                                            Thanks Jamietk , for your support.

                                                                                                                                            We are just  3 months in adoption process ,we need to fly abroad to bring all paperwork and to attend solicitors ,because we are adopting abroad.

                                                                                                                                            My husband cannot have children because of serious accident in childhood (he was in coma for 2 days). We did IVF , it failed and I was diagnosed with melanoma straight away ,so Docs said I better not pregnant again in next 5 years.

                                                                                                                                            I wanted to adopt even before IVF , so now we are adopting !!!!!:)

                                                                                                                                            Good luck to your as well and hopefully we will be happy Mums soon !!!!!!!!!

                                                                                                                                            natasha
                                                                                                                                            Participant

                                                                                                                                              Thanks Jamietk , for your support.

                                                                                                                                              We are just  3 months in adoption process ,we need to fly abroad to bring all paperwork and to attend solicitors ,because we are adopting abroad.

                                                                                                                                              My husband cannot have children because of serious accident in childhood (he was in coma for 2 days). We did IVF , it failed and I was diagnosed with melanoma straight away ,so Docs said I better not pregnant again in next 5 years.

                                                                                                                                              I wanted to adopt even before IVF , so now we are adopting !!!!!:)

                                                                                                                                              Good luck to your as well and hopefully we will be happy Mums soon !!!!!!!!!

                                                                                                                                              Jamietk
                                                                                                                                              Participant

                                                                                                                                                Natasha,

                                                                                                                                                 

                                                                                                                                                We also could not biologically have children before melanoma. I am diabetic, have pcos, and last year was diagnosed with mild heart disease, and melanoma in 2005. We knew my health history/risks were significant for years so we always had kind of planned on adoption even before melanoma. Congrats to you on going the adoption route. Just my personal opinion, but with a dept of .2, I would not hesitate for a second to adopt, and I probably wouldn't wait that long. You have to do what is comfortable to you but you are right, your risks are extremely low of having further issues.

                                                                                                                                                Jamietk
                                                                                                                                                Participant

                                                                                                                                                  Natasha,

                                                                                                                                                   

                                                                                                                                                  We also could not biologically have children before melanoma. I am diabetic, have pcos, and last year was diagnosed with mild heart disease, and melanoma in 2005. We knew my health history/risks were significant for years so we always had kind of planned on adoption even before melanoma. Congrats to you on going the adoption route. Just my personal opinion, but with a dept of .2, I would not hesitate for a second to adopt, and I probably wouldn't wait that long. You have to do what is comfortable to you but you are right, your risks are extremely low of having further issues.

                                                                                                                                                  natasha
                                                                                                                                                  Participant

                                                                                                                                                    Jamietk !

                                                                                                                                                         Congradulations on your NED anniversary !!!! We are planning adoption as well ,but I was diagnosed this year Jan only. We cannot have children naturally ( even before my diagnosys) , so I hope I will be fine. Mine was only 0.2 Breslow. I spoke with my Docs about adoption and they said go for it ,because of very low risk of dying of this cancer

                                                                                                                                                    natasha
                                                                                                                                                    Participant

                                                                                                                                                      Jamietk !

                                                                                                                                                           Congradulations on your NED anniversary !!!! We are planning adoption as well ,but I was diagnosed this year Jan only. We cannot have children naturally ( even before my diagnosys) , so I hope I will be fine. Mine was only 0.2 Breslow. I spoke with my Docs about adoption and they said go for it ,because of very low risk of dying of this cancer

                                                                                                                                                    Jamietk
                                                                                                                                                    Participant

                                                                                                                                                      I think I can understand where you're coming from. As much as I believe in my faith in God and that we can be healed if it is his Will, I am also very much a numbers-person. Statistics speak to me. Not because I totally rely on them to drive my decisions and determine my comfort or worry levels. But because they are factual of what has happened. So I think I do understand the worry that is associated with the fact that my 10 year survival rate at the early edge of Stage IIA is about 69% (if memory serves me correctly). That said, I had my 7 year anniversary yesterday of having my melanoma removed. So far, so good. I go for my official checkup at MDA in November. After about the 4 or 5 year mark, my husband and I started talking about adoption and when I discussed it with my Dr., he told me I only had about a 2% to 3% chance of recurrence at that point. Sure, it could happen. And the numbers tell me that before 2015, I have a 31% chance of not being here. But I am still here 7 years later so I hope that gives you some hope.

                                                                                                                                                      Jamietk
                                                                                                                                                      Participant

                                                                                                                                                        I think I can understand where you're coming from. As much as I believe in my faith in God and that we can be healed if it is his Will, I am also very much a numbers-person. Statistics speak to me. Not because I totally rely on them to drive my decisions and determine my comfort or worry levels. But because they are factual of what has happened. So I think I do understand the worry that is associated with the fact that my 10 year survival rate at the early edge of Stage IIA is about 69% (if memory serves me correctly). That said, I had my 7 year anniversary yesterday of having my melanoma removed. So far, so good. I go for my official checkup at MDA in November. After about the 4 or 5 year mark, my husband and I started talking about adoption and when I discussed it with my Dr., he told me I only had about a 2% to 3% chance of recurrence at that point. Sure, it could happen. And the numbers tell me that before 2015, I have a 31% chance of not being here. But I am still here 7 years later so I hope that gives you some hope.

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                                                                                                                                                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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