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Melanoma prognosis based on AJCC staging.

Forums General Melanoma Community Melanoma prognosis based on AJCC staging.

  • Post
    djpayn
    Participant

      Hello.  

      I would like feedback from people experienced with Melanoma staging based on the AJCC staging charts, and what each persons Doctors have told them. I am Specifically interested in stage IIIC but please feel free to add anything, no matter what your stage.

       

      Acording to the "staging charts" a person who is a stage IIIC has what is considered advanced melanoma, and with a few variables, the five year  "prognosis" varies from 15 to 29 percent chance of survival.

      Is this accurate?

      Hello.  

      I would like feedback from people experienced with Melanoma staging based on the AJCC staging charts, and what each persons Doctors have told them. I am Specifically interested in stage IIIC but please feel free to add anything, no matter what your stage.

       

      Acording to the "staging charts" a person who is a stage IIIC has what is considered advanced melanoma, and with a few variables, the five year  "prognosis" varies from 15 to 29 percent chance of survival.

      Is this accurate?

      If you have stage III melanoma, and the risk of recurrance is high in the first 5 years, are your chances of survival greater if you get past the 5 year mark?

      Is there any way to know where the melanoma will recurr (as in what part of the body)?

      Are you in remission if your cancer has been removed?

      When are you cured from Melanoma?

      What can a stage III person do to prevent Melanoma from returning?

      If the "prognosis" for stage III melanoma is so severe, what is the average amount of time until recurrance?

       

      Thank you to anyone who helps with these questions.

      I realize some of them may seem dumb, but I am trying to understand where someone stands based on the statistics.

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    • Replies
        Sherron
        Participant

          THERE IS NO CURE FROM MELANOMA.   Only "NED" – No Evidence of Disease.   It may come back, it may not.  You must be careful in watching your body for any changes.  Best wishes and good luck to you!

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          Sherron
          Participant

            THERE IS NO CURE FROM MELANOMA.   Only "NED" – No Evidence of Disease.   It may come back, it may not.  You must be careful in watching your body for any changes.  Best wishes and good luck to you!

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            Carol Taylor
            Participant

              I'm 3b according to the staging, and according to my melanoma specialist surgical oncologist, I have a 30-35% chance that it will recur in either my brain or lungs.  My original site was upper left arm, removed July 2008.

              There is no "cure" per se to the best of my understanding, but that doesn't mean it will return either. The best thing to do is stay aware & vigilant and make sure your dermatologist & oncologist & surgeon are all menaloma specialists.  Seriously and see them as often as they say, the frequency will be more at the onset and then slowly lessen.

              Others can fill in the medical stuff far better than me.  I'd just like to encourage you not to get caught up in the statistics.  You are a person and not a number.  You will fall on one side of any stat…the positive side or the not positive side.

              Most stats are given in the negative.  Mine was. "You have a 30-35% chance this will come back within the next ten years and when it does, it will be in your brain or lungs."  That what I was told and I'm sure it's true.  And I immediately got all caught up in "woe is me!"

              I even saw that stat lived out in a colleague of mine. His melanoma came back in his brain within a few years.  Praise the Lord, he's doing great now, but it was touch & go & iffy for a while.

              It eventually hit me, math not being my strong suit but optimism is, that if I have a 30-35 % chance of it COMING back, then that means that I have a 65-70% chance that it WON'T!!!!

              THAT'S how I choose to look at all stats now. I look and then I remind myself that I'm a person.  In a way stats can be pieces of useful info, but please don't let them become your focus. Do what you can to stay positive and on the good side of any stat.  You may indeed become someone, in time, who does find yourself on the negative of a stat.  But right now, try to not base stuff on stats.  You're an individual and you'll need a team who treats you as such and that begins with you.

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              Carol Taylor
              Participant

                I'm 3b according to the staging, and according to my melanoma specialist surgical oncologist, I have a 30-35% chance that it will recur in either my brain or lungs.  My original site was upper left arm, removed July 2008.

                There is no "cure" per se to the best of my understanding, but that doesn't mean it will return either. The best thing to do is stay aware & vigilant and make sure your dermatologist & oncologist & surgeon are all menaloma specialists.  Seriously and see them as often as they say, the frequency will be more at the onset and then slowly lessen.

                Others can fill in the medical stuff far better than me.  I'd just like to encourage you not to get caught up in the statistics.  You are a person and not a number.  You will fall on one side of any stat…the positive side or the not positive side.

                Most stats are given in the negative.  Mine was. "You have a 30-35% chance this will come back within the next ten years and when it does, it will be in your brain or lungs."  That what I was told and I'm sure it's true.  And I immediately got all caught up in "woe is me!"

                I even saw that stat lived out in a colleague of mine. His melanoma came back in his brain within a few years.  Praise the Lord, he's doing great now, but it was touch & go & iffy for a while.

                It eventually hit me, math not being my strong suit but optimism is, that if I have a 30-35 % chance of it COMING back, then that means that I have a 65-70% chance that it WON'T!!!!

                THAT'S how I choose to look at all stats now. I look and then I remind myself that I'm a person.  In a way stats can be pieces of useful info, but please don't let them become your focus. Do what you can to stay positive and on the good side of any stat.  You may indeed become someone, in time, who does find yourself on the negative of a stat.  But right now, try to not base stuff on stats.  You're an individual and you'll need a team who treats you as such and that begins with you.

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                DebbieH
                Participant

                  I'm also stage IIIC and I'm in the bottom of the three subcategories of IIIC, so, I had a 27% chance to live 5 years after my diagnosis and an 18% to live 10 years.  Those numbers were hard to hear but I NEED to know the stats and I know full well that I'm not a statistic, however you need to know these numbers in order to make an informed treatment decision as what it represents is what happens to most people at that stage. 

                  You're considered in remission, or NED (no evidence of disease) when the cancer is removed and they can't find anymore.  You're cured of melanoma when something else kills you first (ha!).  There is no way to tell where, or if, it will recur but the more common places are the regional lymphnodes for the area where it was found or nearby organs, but it can come back anywhere at all so we need to be watching for any change in our body.

                  Keep in mind the other categories of stage III have better "odds" and there are many people here who are defying ALL odds!

                  Good luck to you.  If you're newly diagnosed I'm sure you're in shock.  When you get some time behind you and you're diagnosis things get easier.

                  DebbieH, stage IIIC and NED over 9 1/2 years after interferon and no scans

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                  DebbieH
                  Participant

                    I'm also stage IIIC and I'm in the bottom of the three subcategories of IIIC, so, I had a 27% chance to live 5 years after my diagnosis and an 18% to live 10 years.  Those numbers were hard to hear but I NEED to know the stats and I know full well that I'm not a statistic, however you need to know these numbers in order to make an informed treatment decision as what it represents is what happens to most people at that stage. 

                    You're considered in remission, or NED (no evidence of disease) when the cancer is removed and they can't find anymore.  You're cured of melanoma when something else kills you first (ha!).  There is no way to tell where, or if, it will recur but the more common places are the regional lymphnodes for the area where it was found or nearby organs, but it can come back anywhere at all so we need to be watching for any change in our body.

                    Keep in mind the other categories of stage III have better "odds" and there are many people here who are defying ALL odds!

                    Good luck to you.  If you're newly diagnosed I'm sure you're in shock.  When you get some time behind you and you're diagnosis things get easier.

                    DebbieH, stage IIIC and NED over 9 1/2 years after interferon and no scans

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                    RMcLegal
                    Participant

                      I was diagnosed Stage IIIc in 2003 (14 malignant nodes) and underwent "adjuvant" biochemotherapy at the University of Colorado Cancer Center– "adjuvant" meaning treatment intended to prevent a recurrence.  Today I'm healthy and showing no evident disease.  I just saw the melanoma specialist last week for a six-month checkup and heard the usual– he can't tell me that my melanoma will never recur somewhere, sometime (i.e. I'm not "cured" and no cure exists) but as time goes by he is increasingly optimistic that it won't.  I've blogged about the lighter side of my long, strange trip at http://www.hotelmelanoma.blogspot.com.  Best wishes to you.  There are lots of folks like me who are many years down the road from receiving a Stage IIIc diagnosis.  My take on the survival statistics is that they are only useful to you as a patient in making treatment decisions– for me, the statistics led to my decision to go for the most aggressive treatment option available at the time.

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                      RMcLegal
                      Participant

                        I was diagnosed Stage IIIc in 2003 (14 malignant nodes) and underwent "adjuvant" biochemotherapy at the University of Colorado Cancer Center– "adjuvant" meaning treatment intended to prevent a recurrence.  Today I'm healthy and showing no evident disease.  I just saw the melanoma specialist last week for a six-month checkup and heard the usual– he can't tell me that my melanoma will never recur somewhere, sometime (i.e. I'm not "cured" and no cure exists) but as time goes by he is increasingly optimistic that it won't.  I've blogged about the lighter side of my long, strange trip at http://www.hotelmelanoma.blogspot.com.  Best wishes to you.  There are lots of folks like me who are many years down the road from receiving a Stage IIIc diagnosis.  My take on the survival statistics is that they are only useful to you as a patient in making treatment decisions– for me, the statistics led to my decision to go for the most aggressive treatment option available at the time.

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                        EmilyandMike
                        Participant

                           

                          This is the AJCC prognosis calculator that our docs used for my husband.  It is the most updated one according to them.  Please take these numbers with a grain of salt as it is only a number…and you aren't a number, but these stats are better than other ones I have seen published.

                          http://www.melanomaprognosis.org/

                          What everyone else has said is right on. What truly sucks about melanoma is that it is tricky.  You can never say never with melanoma.  It comes back after 5-30 years when other cancer survivors are considered in remission.  So we also must learn to deal with this disease mentally.

                          Our docs said after two years NED your chances of not recurring get better.  But with all of the people I see on this board, I dont really believe it.

                          Best,

                          Emily

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                            Jamietk
                            Participant

                              Emily,

                              It has been explained to me at a major cancer center that your highest risk period of recurrance is through the first 3 years. And then your chance of it recurring even decreases after 5 years, and so on. It is true that as more time passes, your risk of recurrence does decrease. You are correct that it can still come back at any time. You say you don't believe the risk decreases as time goes on becauase of the people on here. In reality, though, there are many many more people out there whose early melanoma has not recurred and likely never will. We're seeing it skewed here because this is where those fighting conegregate. Still doesn't make the pain any better on this board. But statistically, your survival odds do improve as more time goes on.

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                              EmilyandMike
                              Participant

                                Thanks Jamietk – My husband is 3a – so his docs say we can relax a bit more after 2 years (UCSF said this) – which makes me happy because we are almost there – it will be Aug 2011 for the next set of scans.  

                                I really am trying to relax but I will always be skeptic when it comes to this disease.  I have heard from so many people on this board, other boards, and people I know personally –  where they recur 2+ years BUT I also know others are doing just great (like my neighbor who was diagnosed Stage 3b and he is 5 years NED with no Interferon).   You just never know.

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                                EmilyandMike
                                Participant

                                  Thanks Jamietk – My husband is 3a – so his docs say we can relax a bit more after 2 years (UCSF said this) – which makes me happy because we are almost there – it will be Aug 2011 for the next set of scans.  

                                  I really am trying to relax but I will always be skeptic when it comes to this disease.  I have heard from so many people on this board, other boards, and people I know personally –  where they recur 2+ years BUT I also know others are doing just great (like my neighbor who was diagnosed Stage 3b and he is 5 years NED with no Interferon).   You just never know.

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                                  Jamietk
                                  Participant

                                    Emily,

                                    It has been explained to me at a major cancer center that your highest risk period of recurrance is through the first 3 years. And then your chance of it recurring even decreases after 5 years, and so on. It is true that as more time passes, your risk of recurrence does decrease. You are correct that it can still come back at any time. You say you don't believe the risk decreases as time goes on becauase of the people on here. In reality, though, there are many many more people out there whose early melanoma has not recurred and likely never will. We're seeing it skewed here because this is where those fighting conegregate. Still doesn't make the pain any better on this board. But statistically, your survival odds do improve as more time goes on.

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                                  EmilyandMike
                                  Participant

                                     

                                    This is the AJCC prognosis calculator that our docs used for my husband.  It is the most updated one according to them.  Please take these numbers with a grain of salt as it is only a number…and you aren't a number, but these stats are better than other ones I have seen published.

                                    http://www.melanomaprognosis.org/

                                    What everyone else has said is right on. What truly sucks about melanoma is that it is tricky.  You can never say never with melanoma.  It comes back after 5-30 years when other cancer survivors are considered in remission.  So we also must learn to deal with this disease mentally.

                                    Our docs said after two years NED your chances of not recurring get better.  But with all of the people I see on this board, I dont really believe it.

                                    Best,

                                    Emily

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                                    Jamietk
                                    Participant

                                      I am stage IIA (very beginning of the stage according to my second review of path by MDA, my first local path report put me at the very upper end of IB). I go to MDA. I was diagnosed a little over 5 1/2 years ago. My PA has written a medical letter of recommendation for me for adoption purposes that states (and this was well over a year ago) that my risk of the cancer recurring at this point (since a good chunk of time has passed) is only 2%-3%. He has even told me that once I reached the 5 year mark, I am considered cured. Don't know how his interpretation would change for higher stages, but this is what I've been told.

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                                        Lisa13
                                        Participant

                                          I was diagnosed 3c and my oncologist gave me a 40% chance for 5 years and a 60% chance it would spread in 5 years. I've heard also that the first 3 years are the most crucial and if you have no re-occurence, the odds get better. Until they find a cure or vaccine, there is always a chance that it could come back. 

                                          It seems a few of us have received different stats, so oncologists don't seem to be looking on the same page :)

                                          I pray for all of us to fight off this beast until a cure arrives or a drug that keeps it "in remission" for many, many years.

                                          Lisa

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                                          Lisa13
                                          Participant

                                            I was diagnosed 3c and my oncologist gave me a 40% chance for 5 years and a 60% chance it would spread in 5 years. I've heard also that the first 3 years are the most crucial and if you have no re-occurence, the odds get better. Until they find a cure or vaccine, there is always a chance that it could come back. 

                                            It seems a few of us have received different stats, so oncologists don't seem to be looking on the same page :)

                                            I pray for all of us to fight off this beast until a cure arrives or a drug that keeps it "in remission" for many, many years.

                                            Lisa

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                                          Jamietk
                                          Participant

                                            I am stage IIA (very beginning of the stage according to my second review of path by MDA, my first local path report put me at the very upper end of IB). I go to MDA. I was diagnosed a little over 5 1/2 years ago. My PA has written a medical letter of recommendation for me for adoption purposes that states (and this was well over a year ago) that my risk of the cancer recurring at this point (since a good chunk of time has passed) is only 2%-3%. He has even told me that once I reached the 5 year mark, I am considered cured. Don't know how his interpretation would change for higher stages, but this is what I've been told.

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                                            Natjocur
                                            Participant
                                              Realizing this postime is 5 years old, I’m still going to reply. I was stage 3B 6.5 years ago. 22 nodes removed, but only 1 positive (3.5 cm). Underwent interferon for 9 months- stopped due to side-effects. Recurrence this past October with 1 positive node in same area. Here’s my experience.
                                              Yes the doctors said chance of recurrence goes down after 3 years, but in all my reading of persoNalgene stories I did not find that to be the case. It seems, to me, to tend to wait longer- I kind of expected a good 8 years- before coming back. That said I’m happy it waited 6. I’m now on Ipilimumab, which so far sucks. But if it keeps it away longer I’ll keep trying.

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                                              Natjocur
                                              Participant
                                                Realizing this postime is 5 years old, I’m still going to reply. I was stage 3B 6.5 years ago. 22 nodes removed, but only 1 positive (3.5 cm). Underwent interferon for 9 months- stopped due to side-effects. Recurrence this past October with 1 positive node in same area. Here’s my experience.
                                                Yes the doctors said chance of recurrence goes down after 3 years, but in all my reading of persoNalgene stories I did not find that to be the case. It seems, to me, to tend to wait longer- I kind of expected a good 8 years- before coming back. That said I’m happy it waited 6. I’m now on Ipilimumab, which so far sucks. But if it keeps it away longer I’ll keep trying.

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                                                Natjocur
                                                Participant
                                                  Realizing this postime is 5 years old, I’m still going to reply. I was stage 3B 6.5 years ago. 22 nodes removed, but only 1 positive (3.5 cm). Underwent interferon for 9 months- stopped due to side-effects. Recurrence this past October with 1 positive node in same area. Here’s my experience.
                                                  Yes the doctors said chance of recurrence goes down after 3 years, but in all my reading of persoNalgene stories I did not find that to be the case. It seems, to me, to tend to wait longer- I kind of expected a good 8 years- before coming back. That said I’m happy it waited 6. I’m now on Ipilimumab, which so far sucks. But if it keeps it away longer I’ll keep trying.

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