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Stage II…Question on Nodes

Forums General Melanoma Community Stage II…Question on Nodes

  • Post
    MattF
    Participant

      So over 1mm tumor on my cheek and ear lobe right side.

      WLE and SLN biopsy done Sept 2012. Neg SNL with good margins. Now only treatment is monitoring. 

      I have right side cluster migraines, horner's syndrom, trigeminal neuralgia and aniscoria.

      as more than one Doctor and more than one Oncologist has told me "alot about melanoma is unknown. it can really do anything it wants. it can move anywhere and be fast or slow"

      So over 1mm tumor on my cheek and ear lobe right side.

      WLE and SLN biopsy done Sept 2012. Neg SNL with good margins. Now only treatment is monitoring. 

      I have right side cluster migraines, horner's syndrom, trigeminal neuralgia and aniscoria.

      as more than one Doctor and more than one Oncologist has told me "alot about melanoma is unknown. it can really do anything it wants. it can move anywhere and be fast or slow"

      So my question is….just because they didn't find it in the lymph nodes they took from my neck doesn't mean it could not be in lymph system either in transit or in another area of nodes "ie right arm pit" etc?

      I may not think this pessimisively except that i have been suffering from the other medical conditions I noted…and somedays it all just feels off if you know what I mean.

    Viewing 8 reply threads
    • Replies
        Cindy VT
        Participant

          I had terrible migraines.  Sometimes they lasted several days.  I went to see a neurologist in 1999 for my migraines.

          He put me on some anti seziure drug that made me do really weird things.  I was a realtor and I had customers in my car taking them to a house and suddenly I didn't remember where I was.  It was frightening.  The also gave me

          imitrex which worked wonders until I started to get a rebound effect from that drug.  So most of the time I'd deal with it and if it went over a day I went to the Emergency Room where they immediately figure you are looking for drugs.

          What the neuro guy in 1999 didn't tell me is that I had a tiny tumor in my brain.  I guess he figured it was small and didn't think it was relavent.  In 2006 it was a good size a little more than say a quarter like an old 50Cent piece.  And my migraines were so bad all I wanted to do was hit my head against the wall.  The drugs at the Emergency were not working.  It was so wonderful to get rid of it.  My headaches were gone.  So much the the drug seeking migraine sufferer.

          Unlike Arnold Swartenegger,   Not having a Tumor….mine was a Tumor!  You know whats really weird.  I had a stroke in 2012 and my short term memory is really bad but sometime my long term memory is reall accurate.  

          Cindy VT with her bo bo dog Oliver the wonder Daschund!

           

           

          Cindy VT
          Participant

            I had terrible migraines.  Sometimes they lasted several days.  I went to see a neurologist in 1999 for my migraines.

            He put me on some anti seziure drug that made me do really weird things.  I was a realtor and I had customers in my car taking them to a house and suddenly I didn't remember where I was.  It was frightening.  The also gave me

            imitrex which worked wonders until I started to get a rebound effect from that drug.  So most of the time I'd deal with it and if it went over a day I went to the Emergency Room where they immediately figure you are looking for drugs.

            What the neuro guy in 1999 didn't tell me is that I had a tiny tumor in my brain.  I guess he figured it was small and didn't think it was relavent.  In 2006 it was a good size a little more than say a quarter like an old 50Cent piece.  And my migraines were so bad all I wanted to do was hit my head against the wall.  The drugs at the Emergency were not working.  It was so wonderful to get rid of it.  My headaches were gone.  So much the the drug seeking migraine sufferer.

            Unlike Arnold Swartenegger,   Not having a Tumor….mine was a Tumor!  You know whats really weird.  I had a stroke in 2012 and my short term memory is really bad but sometime my long term memory is reall accurate.  

            Cindy VT with her bo bo dog Oliver the wonder Daschund!

             

             

            Cindy VT
            Participant

              I had terrible migraines.  Sometimes they lasted several days.  I went to see a neurologist in 1999 for my migraines.

              He put me on some anti seziure drug that made me do really weird things.  I was a realtor and I had customers in my car taking them to a house and suddenly I didn't remember where I was.  It was frightening.  The also gave me

              imitrex which worked wonders until I started to get a rebound effect from that drug.  So most of the time I'd deal with it and if it went over a day I went to the Emergency Room where they immediately figure you are looking for drugs.

              What the neuro guy in 1999 didn't tell me is that I had a tiny tumor in my brain.  I guess he figured it was small and didn't think it was relavent.  In 2006 it was a good size a little more than say a quarter like an old 50Cent piece.  And my migraines were so bad all I wanted to do was hit my head against the wall.  The drugs at the Emergency were not working.  It was so wonderful to get rid of it.  My headaches were gone.  So much the the drug seeking migraine sufferer.

              Unlike Arnold Swartenegger,   Not having a Tumor….mine was a Tumor!  You know whats really weird.  I had a stroke in 2012 and my short term memory is really bad but sometime my long term memory is reall accurate.  

              Cindy VT with her bo bo dog Oliver the wonder Daschund!

               

               

                MattF
                Participant

                  Yeah i am on preventitive meds. 

                   

                  I also have treatment meds…Oxygen therapy and Narcotic meds.

                   

                  I have had 2 MRI's and I started with a sudden stroke like onset Migraine in 2011 when i clearly had Melanoma…it just had not been diagnosed yet.

                  The doctors tell me anything can happen with Melanoma then turn around and tell me my blood work and MRI show that my migraines and other neurological conditions have absolutely nothing to do with Melanoma….hmm

                  MattF
                  Participant

                    Yeah i am on preventitive meds. 

                     

                    I also have treatment meds…Oxygen therapy and Narcotic meds.

                     

                    I have had 2 MRI's and I started with a sudden stroke like onset Migraine in 2011 when i clearly had Melanoma…it just had not been diagnosed yet.

                    The doctors tell me anything can happen with Melanoma then turn around and tell me my blood work and MRI show that my migraines and other neurological conditions have absolutely nothing to do with Melanoma….hmm

                    MattF
                    Participant

                      Yeah i am on preventitive meds. 

                       

                      I also have treatment meds…Oxygen therapy and Narcotic meds.

                       

                      I have had 2 MRI's and I started with a sudden stroke like onset Migraine in 2011 when i clearly had Melanoma…it just had not been diagnosed yet.

                      The doctors tell me anything can happen with Melanoma then turn around and tell me my blood work and MRI show that my migraines and other neurological conditions have absolutely nothing to do with Melanoma….hmm

                      Cindy VT
                      Participant

                        I works in a GYN Oncology clinic part time.  I doctor there told me that blood work isn't the end all be all of whether you have cancer or not.  It sometimes can be quite wrong.  She said there were other variables. 

                        I had a PET Scan in 2010, I think, it was either 2009 or 2010 and the PET Said I had a cancerous tumor in my upper colon.  I had an upper colonoscopy 2 weeks later and they said there wasn't anything there.  I was freaking out for two weeks. 

                        I have been told this disease different than other cancers can have lesions and tumors show up then go away.  Supposedly its all in our immune system. 

                        When I lost my business, I took a job in a Cancer Research Center for 16 hours as a office help person, but it really was an incredible experience.  Unfortunately they were not working on Melanoma. 

                        I appologize if I repeat myself.  Its so annoying  and I hate it. 

                         

                        It would be interesting if someone did a study of how many people on this site had the same problems, migraines, etc. 

                        I guess its probably been done.

                        Cindy VT
                        Participant

                          I works in a GYN Oncology clinic part time.  I doctor there told me that blood work isn't the end all be all of whether you have cancer or not.  It sometimes can be quite wrong.  She said there were other variables. 

                          I had a PET Scan in 2010, I think, it was either 2009 or 2010 and the PET Said I had a cancerous tumor in my upper colon.  I had an upper colonoscopy 2 weeks later and they said there wasn't anything there.  I was freaking out for two weeks. 

                          I have been told this disease different than other cancers can have lesions and tumors show up then go away.  Supposedly its all in our immune system. 

                          When I lost my business, I took a job in a Cancer Research Center for 16 hours as a office help person, but it really was an incredible experience.  Unfortunately they were not working on Melanoma. 

                          I appologize if I repeat myself.  Its so annoying  and I hate it. 

                           

                          It would be interesting if someone did a study of how many people on this site had the same problems, migraines, etc. 

                          I guess its probably been done.

                          Cindy VT
                          Participant

                            I works in a GYN Oncology clinic part time.  I doctor there told me that blood work isn't the end all be all of whether you have cancer or not.  It sometimes can be quite wrong.  She said there were other variables. 

                            I had a PET Scan in 2010, I think, it was either 2009 or 2010 and the PET Said I had a cancerous tumor in my upper colon.  I had an upper colonoscopy 2 weeks later and they said there wasn't anything there.  I was freaking out for two weeks. 

                            I have been told this disease different than other cancers can have lesions and tumors show up then go away.  Supposedly its all in our immune system. 

                            When I lost my business, I took a job in a Cancer Research Center for 16 hours as a office help person, but it really was an incredible experience.  Unfortunately they were not working on Melanoma. 

                            I appologize if I repeat myself.  Its so annoying  and I hate it. 

                             

                            It would be interesting if someone did a study of how many people on this site had the same problems, migraines, etc. 

                            I guess its probably been done.

                            MattF
                            Participant

                              That is interesting. 

                              I am only 8 months from my surgery and i had one doctor ready to go to just doing blood work since they didnt find anything in my margins or lymph nodes.

                              I wasn't satisfied with that treatment plan and want some xrays or scans done for atleast a year

                              MattF
                              Participant

                                That is interesting. 

                                I am only 8 months from my surgery and i had one doctor ready to go to just doing blood work since they didnt find anything in my margins or lymph nodes.

                                I wasn't satisfied with that treatment plan and want some xrays or scans done for atleast a year

                                MattF
                                Participant

                                  That is interesting. 

                                  I am only 8 months from my surgery and i had one doctor ready to go to just doing blood work since they didnt find anything in my margins or lymph nodes.

                                  I wasn't satisfied with that treatment plan and want some xrays or scans done for atleast a year

                                Janner
                                Participant

                                  If it were in the lymph system, the VAST majority of the time you would find it in the nearest lymph node basin, i.e. your neck.  It's unlikely it would skip your neck and jump to the armpit.  Your SNB confirmed that the nearest drainage basin is the neck.  The clavicle area would be a more likely seconary drainage area than the armpit, btw.  No one can say that it could never end up in the armpit, but again, extremely unlikely.  For a smaller percentage of folks, it travels via the blood supply and that would more likely go directly to an organ.  You can't predict anything for certain with any cancer, melanoma included.  But statistically, if yours were to recur, it would most likely happen in two places:  locally at the primary site or in the neck nodes. 

                                  Janner
                                  Participant

                                    If it were in the lymph system, the VAST majority of the time you would find it in the nearest lymph node basin, i.e. your neck.  It's unlikely it would skip your neck and jump to the armpit.  Your SNB confirmed that the nearest drainage basin is the neck.  The clavicle area would be a more likely seconary drainage area than the armpit, btw.  No one can say that it could never end up in the armpit, but again, extremely unlikely.  For a smaller percentage of folks, it travels via the blood supply and that would more likely go directly to an organ.  You can't predict anything for certain with any cancer, melanoma included.  But statistically, if yours were to recur, it would most likely happen in two places:  locally at the primary site or in the neck nodes. 

                                    Janner
                                    Participant

                                      If it were in the lymph system, the VAST majority of the time you would find it in the nearest lymph node basin, i.e. your neck.  It's unlikely it would skip your neck and jump to the armpit.  Your SNB confirmed that the nearest drainage basin is the neck.  The clavicle area would be a more likely seconary drainage area than the armpit, btw.  No one can say that it could never end up in the armpit, but again, extremely unlikely.  For a smaller percentage of folks, it travels via the blood supply and that would more likely go directly to an organ.  You can't predict anything for certain with any cancer, melanoma included.  But statistically, if yours were to recur, it would most likely happen in two places:  locally at the primary site or in the neck nodes. 

                                        MattF
                                        Participant

                                          All of that makes perfect sense.

                                          If i felt good I may not be concerned but i don't.

                                          What i noticed is the follow on checks are bloood work and asking me how i feel but no real checking of anything. 

                                          I assume how people figure out if there is a reoocurance later in life is finally feeling something out of whack somewhere and someone actually biopsying or scanning something.

                                          MattF
                                          Participant

                                            All of that makes perfect sense.

                                            If i felt good I may not be concerned but i don't.

                                            What i noticed is the follow on checks are bloood work and asking me how i feel but no real checking of anything. 

                                            I assume how people figure out if there is a reoocurance later in life is finally feeling something out of whack somewhere and someone actually biopsying or scanning something.

                                            MattF
                                            Participant

                                              All of that makes perfect sense.

                                              If i felt good I may not be concerned but i don't.

                                              What i noticed is the follow on checks are bloood work and asking me how i feel but no real checking of anything. 

                                              I assume how people figure out if there is a reoocurance later in life is finally feeling something out of whack somewhere and someone actually biopsying or scanning something.

                                              Cindy VT
                                              Participant
                                                Welcome to the world of Doctor's, Nurse Practitioner, Physician Assistants in the world of Cancer.  
                                                 

                                                When I had the lump in the armpit, and have it turn into a tumor that space of time for it to grow so rapidly was from October to December.  What happened here?  Why did it take so long to diagnose? 
                                                 

                                                I was a good patient.  I was the nice patient that asked lot of questions and wanted answers. I just didn't go along with things because the Nurse Practitioner said I was suppose to do what she told me to do.
                                                 
                                                I had a nurse practitioner give my interferon infusion dose the first day in the hospital.  After that a Visiting Nurse gave me the infusion in my home.  When I went home from the first infusion I sat watching TV and then I was out until I ended up in the hospital several days later. I think she fried me.  I also think if I have been given my infusions at the cancer center which was the plan,  instead of my home they would have known earlier what was going on. My family was freaking out because I was acting crazy, and they called  the cancer center where no one really cared what I was going through until my husband took me to the hospital. When I was in the hospital getting the interferon flushed out of my system.  I never saw my doctor, because I was put on Neuro service and saw Neurologists.

                                                  A couple of days later I went for my appointment with the Nurse Practitioner.  She said okay well that didn't work, so now I'm going to give you half the dose.  I then said.  No.  No more interferon.  She got upset with me (a little off color language ensued)  I said no more interferon.  I said what you are going to do is pull this pic line out of my arm and for right now that is what we are going to do until I talk to the doctor.  She said I needed a psych consultation and called psych.  She did pull the pic line out of my arm.  I basically said I did not want to see her anymore that from now on I wanted to see the doctor.  I did talk to psych  and they said I wasn't crazy. 
                                                 

                                                Doctors, Nurses, etc.  They are people.  They make mistakes.  They contradict one another.
                                                I'm not going to sue anyone, because they are trying to save my life.  But they do make
                                                mistakes.  That is why I always ask questions.  Some of the physicians I have had take care of me were brilliant, wonderful people, who really cared about my welfare.  And I don't know how I could ever thank them.  I have also had nurses who were wonderful as well.
                                                I guess its the 80/20 rule. 
                                                 
                                                I think there is so much that goes along with this disease, most of them don't have a clue.
                                                And this is due to the fact that Melanoma does not get the same amount of research
                                                money that let's say "Breast Cancer " gets.  So we lose out.  The Researchers do their very best to find a cure with what they have to work with.  What would have happened if Susan Komen died of Melanoma instead of Breast Cancer?
                                                 
                                                They need more money for research.
                                                 

                                                Cindy VT 

                                                Cindy VT
                                                Participant
                                                  Welcome to the world of Doctor's, Nurse Practitioner, Physician Assistants in the world of Cancer.  
                                                   

                                                  When I had the lump in the armpit, and have it turn into a tumor that space of time for it to grow so rapidly was from October to December.  What happened here?  Why did it take so long to diagnose? 
                                                   

                                                  I was a good patient.  I was the nice patient that asked lot of questions and wanted answers. I just didn't go along with things because the Nurse Practitioner said I was suppose to do what she told me to do.
                                                   
                                                  I had a nurse practitioner give my interferon infusion dose the first day in the hospital.  After that a Visiting Nurse gave me the infusion in my home.  When I went home from the first infusion I sat watching TV and then I was out until I ended up in the hospital several days later. I think she fried me.  I also think if I have been given my infusions at the cancer center which was the plan,  instead of my home they would have known earlier what was going on. My family was freaking out because I was acting crazy, and they called  the cancer center where no one really cared what I was going through until my husband took me to the hospital. When I was in the hospital getting the interferon flushed out of my system.  I never saw my doctor, because I was put on Neuro service and saw Neurologists.

                                                    A couple of days later I went for my appointment with the Nurse Practitioner.  She said okay well that didn't work, so now I'm going to give you half the dose.  I then said.  No.  No more interferon.  She got upset with me (a little off color language ensued)  I said no more interferon.  I said what you are going to do is pull this pic line out of my arm and for right now that is what we are going to do until I talk to the doctor.  She said I needed a psych consultation and called psych.  She did pull the pic line out of my arm.  I basically said I did not want to see her anymore that from now on I wanted to see the doctor.  I did talk to psych  and they said I wasn't crazy. 
                                                   

                                                  Doctors, Nurses, etc.  They are people.  They make mistakes.  They contradict one another.
                                                  I'm not going to sue anyone, because they are trying to save my life.  But they do make
                                                  mistakes.  That is why I always ask questions.  Some of the physicians I have had take care of me were brilliant, wonderful people, who really cared about my welfare.  And I don't know how I could ever thank them.  I have also had nurses who were wonderful as well.
                                                  I guess its the 80/20 rule. 
                                                   
                                                  I think there is so much that goes along with this disease, most of them don't have a clue.
                                                  And this is due to the fact that Melanoma does not get the same amount of research
                                                  money that let's say "Breast Cancer " gets.  So we lose out.  The Researchers do their very best to find a cure with what they have to work with.  What would have happened if Susan Komen died of Melanoma instead of Breast Cancer?
                                                   
                                                  They need more money for research.
                                                   

                                                  Cindy VT 

                                                  Cindy VT
                                                  Participant
                                                    Welcome to the world of Doctor's, Nurse Practitioner, Physician Assistants in the world of Cancer.  
                                                     

                                                    When I had the lump in the armpit, and have it turn into a tumor that space of time for it to grow so rapidly was from October to December.  What happened here?  Why did it take so long to diagnose? 
                                                     

                                                    I was a good patient.  I was the nice patient that asked lot of questions and wanted answers. I just didn't go along with things because the Nurse Practitioner said I was suppose to do what she told me to do.
                                                     
                                                    I had a nurse practitioner give my interferon infusion dose the first day in the hospital.  After that a Visiting Nurse gave me the infusion in my home.  When I went home from the first infusion I sat watching TV and then I was out until I ended up in the hospital several days later. I think she fried me.  I also think if I have been given my infusions at the cancer center which was the plan,  instead of my home they would have known earlier what was going on. My family was freaking out because I was acting crazy, and they called  the cancer center where no one really cared what I was going through until my husband took me to the hospital. When I was in the hospital getting the interferon flushed out of my system.  I never saw my doctor, because I was put on Neuro service and saw Neurologists.

                                                      A couple of days later I went for my appointment with the Nurse Practitioner.  She said okay well that didn't work, so now I'm going to give you half the dose.  I then said.  No.  No more interferon.  She got upset with me (a little off color language ensued)  I said no more interferon.  I said what you are going to do is pull this pic line out of my arm and for right now that is what we are going to do until I talk to the doctor.  She said I needed a psych consultation and called psych.  She did pull the pic line out of my arm.  I basically said I did not want to see her anymore that from now on I wanted to see the doctor.  I did talk to psych  and they said I wasn't crazy. 
                                                     

                                                    Doctors, Nurses, etc.  They are people.  They make mistakes.  They contradict one another.
                                                    I'm not going to sue anyone, because they are trying to save my life.  But they do make
                                                    mistakes.  That is why I always ask questions.  Some of the physicians I have had take care of me were brilliant, wonderful people, who really cared about my welfare.  And I don't know how I could ever thank them.  I have also had nurses who were wonderful as well.
                                                    I guess its the 80/20 rule. 
                                                     
                                                    I think there is so much that goes along with this disease, most of them don't have a clue.
                                                    And this is due to the fact that Melanoma does not get the same amount of research
                                                    money that let's say "Breast Cancer " gets.  So we lose out.  The Researchers do their very best to find a cure with what they have to work with.  What would have happened if Susan Komen died of Melanoma instead of Breast Cancer?
                                                     
                                                    They need more money for research.
                                                     

                                                    Cindy VT 

                                                  eric w
                                                  Participant

                                                    Hi Matt….my wife had a mole found to be mel from her arm 2 years ago….margins were clean and SN was clean….1 year ago small nodules were seen on her lungs…we watched them and they were stable for a year..couple months ago they grew slightly…did a needle bio and found to be mel…..we were going to ucla for 3 month follow ups and did scans as well..so to answer your question it can happen…hang in there….

                                                    eric w
                                                    Participant

                                                      Hi Matt….my wife had a mole found to be mel from her arm 2 years ago….margins were clean and SN was clean….1 year ago small nodules were seen on her lungs…we watched them and they were stable for a year..couple months ago they grew slightly…did a needle bio and found to be mel…..we were going to ucla for 3 month follow ups and did scans as well..so to answer your question it can happen…hang in there….

                                                      eric w
                                                      Participant

                                                        Hi Matt….my wife had a mole found to be mel from her arm 2 years ago….margins were clean and SN was clean….1 year ago small nodules were seen on her lungs…we watched them and they were stable for a year..couple months ago they grew slightly…did a needle bio and found to be mel…..we were going to ucla for 3 month follow ups and did scans as well..so to answer your question it can happen…hang in there….

                                                          MattF
                                                          Participant

                                                            thanks eric. 

                                                            crazy they didnt needle them right away? I mean you see it and what is the plan….lets watch it and then we will find out what it is if we need to?

                                                            that is part of my problem…i appreciate the doctors and nurses and volunteers very much. but i have in a way a job that holds people lives in hands and certainly holds millions of dollars of eqiupment …I used to work hard at what i did as did my co workers…but there was and is plenty we didn't know and times that you make your best guess. sometimes that works out great and sometimes not. 

                                                            I just have to trust my instincts and remember that schooling and experience with patients doesn't give doctors the answers only their best guesses.

                                                            Eric you mind me asking the particulars of wife's tumor? size? Bres clark etc

                                                            MattF
                                                            Participant

                                                              thanks eric. 

                                                              crazy they didnt needle them right away? I mean you see it and what is the plan….lets watch it and then we will find out what it is if we need to?

                                                              that is part of my problem…i appreciate the doctors and nurses and volunteers very much. but i have in a way a job that holds people lives in hands and certainly holds millions of dollars of eqiupment …I used to work hard at what i did as did my co workers…but there was and is plenty we didn't know and times that you make your best guess. sometimes that works out great and sometimes not. 

                                                              I just have to trust my instincts and remember that schooling and experience with patients doesn't give doctors the answers only their best guesses.

                                                              Eric you mind me asking the particulars of wife's tumor? size? Bres clark etc

                                                              MattF
                                                              Participant

                                                                thanks eric. 

                                                                crazy they didnt needle them right away? I mean you see it and what is the plan….lets watch it and then we will find out what it is if we need to?

                                                                that is part of my problem…i appreciate the doctors and nurses and volunteers very much. but i have in a way a job that holds people lives in hands and certainly holds millions of dollars of eqiupment …I used to work hard at what i did as did my co workers…but there was and is plenty we didn't know and times that you make your best guess. sometimes that works out great and sometimes not. 

                                                                I just have to trust my instincts and remember that schooling and experience with patients doesn't give doctors the answers only their best guesses.

                                                                Eric you mind me asking the particulars of wife's tumor? size? Bres clark etc

                                                                eric w
                                                                Participant

                                                                  Hey Matt…she has mutiple mets on both lungs…however they are subcentimeter in size…so they were worried about even being able to get a sample…which they did…but had a hard time…one had grown enough to bio but was still subcentimer…bres clark was 1.3mm and was ulcerated…for that year the nodes were stable….

                                                                  eric w
                                                                  Participant

                                                                    Hey Matt…she has mutiple mets on both lungs…however they are subcentimeter in size…so they were worried about even being able to get a sample…which they did…but had a hard time…one had grown enough to bio but was still subcentimer…bres clark was 1.3mm and was ulcerated…for that year the nodes were stable….

                                                                    eric w
                                                                    Participant

                                                                      Hey Matt…she has mutiple mets on both lungs…however they are subcentimeter in size…so they were worried about even being able to get a sample…which they did…but had a hard time…one had grown enough to bio but was still subcentimer…bres clark was 1.3mm and was ulcerated…for that year the nodes were stable….

                                                                      MattF
                                                                      Participant

                                                                        oh that makes sense.

                                                                        mine was 1.1mm + (unknown actual size do to shave biopsy)  something about unknown ulceration. Clarks level IV+ with mitotic rate of 5/mm horizontal growth patterns indicated.

                                                                        I had the melanoma on me for  4 years before i actually had it looked at and got diagnosed.turns out that about a year before i was diagnosed  I started with vision problems and headahces in right eye…about 2 inch from tumor. But mri was clear so just migraines is what they say. 

                                                                        I'm leery of the NED because to me all that means is they haven't found it yet.

                                                                        MattF
                                                                        Participant

                                                                          oh that makes sense.

                                                                          mine was 1.1mm + (unknown actual size do to shave biopsy)  something about unknown ulceration. Clarks level IV+ with mitotic rate of 5/mm horizontal growth patterns indicated.

                                                                          I had the melanoma on me for  4 years before i actually had it looked at and got diagnosed.turns out that about a year before i was diagnosed  I started with vision problems and headahces in right eye…about 2 inch from tumor. But mri was clear so just migraines is what they say. 

                                                                          I'm leery of the NED because to me all that means is they haven't found it yet.

                                                                          MattF
                                                                          Participant

                                                                            oh that makes sense.

                                                                            mine was 1.1mm + (unknown actual size do to shave biopsy)  something about unknown ulceration. Clarks level IV+ with mitotic rate of 5/mm horizontal growth patterns indicated.

                                                                            I had the melanoma on me for  4 years before i actually had it looked at and got diagnosed.turns out that about a year before i was diagnosed  I started with vision problems and headahces in right eye…about 2 inch from tumor. But mri was clear so just migraines is what they say. 

                                                                            I'm leery of the NED because to me all that means is they haven't found it yet.

                                                                            mel123
                                                                            Participant

                                                                              My original SLB came back negative, and a year later my dermatologist felt a mass in my lymph nodes, so we biopsied again and it came back positive for melanoma – but I felt absolutely great, other than being able to physically feel a difference in the lymph nodes under both arms, there were no other indicators that anything was wrong. I think that after a cancer diagnosis, we tend to feel like any ache or pain or anything different at all is cancer related, but that's not necessarily the case. 

                                                                              It was unclear to me whether or not I would have gotten scans, blood work and x-rays whether or not my derm had felt the mass, (that doctor's office was a hot mess and communication was terrible – I've since changed doctors!) but I will say that my blood work and x-rays were great, and the PET scan is what showed something in my lymph nodes (also note that just because something shows up in a PET scan doesn't mean it's cancer, they only know that after a biopsy). So because of that experience, I would suggest that you ask about follow up scans at the one year mark, maybe even 6 months (I can't remember if you said how long it's been so far). You can also feel your lymph nodes to make sure each side is the same. If one feels different, get it looked at. There are insurance requirements etc, but your doctor should be willing to order these tests if you feel like you need them, at least once for a follow up. If you doctor absolutely won't listen, then it's time for a new doctor. 

                                                                              Aside from that, don't live in fear! Cancer takes so much away, but you are alive and well and should take advantage of that! There are stage IV survivors who are living life to the fullest, so why shouldn't you??

                                                                              MattF
                                                                              Participant

                                                                                Believe me i am or i try to enjoy life….

                                                                                Difference is i do'nt feel great. I'm fatigued …still have vision and headache problems. see a Neurologist every 45 days pretty much..on a lot of meds for that.

                                                                                The reason i asked the question …which i will put in another post also…..is i could swear the "contours of mt right armpit are different thatn the left" been that way for a few weeks.

                                                                                I don't go back to oncologist for over a month.

                                                                                I have heard at this point it is not a time to try and be tough…if something feels wrong check it….and then  others say you can't worry about everything.

                                                                                MattF
                                                                                Participant

                                                                                  Believe me i am or i try to enjoy life….

                                                                                  Difference is i do'nt feel great. I'm fatigued …still have vision and headache problems. see a Neurologist every 45 days pretty much..on a lot of meds for that.

                                                                                  The reason i asked the question …which i will put in another post also…..is i could swear the "contours of mt right armpit are different thatn the left" been that way for a few weeks.

                                                                                  I don't go back to oncologist for over a month.

                                                                                  I have heard at this point it is not a time to try and be tough…if something feels wrong check it….and then  others say you can't worry about everything.

                                                                                  Cindy VT
                                                                                  Participant

                                                                                    Did your neurologist due an MRI of your brain?  Your headaches could be from a benign tumor as well.  Doesn't have to be mets.  Headaches are really an incredibly painful problem.  I really wish you good luck.  Just keep in touch and ask questions with your medical providers until you get some satisfaction. 

                                                                                    Cindy VT
                                                                                    Participant

                                                                                      Did your neurologist due an MRI of your brain?  Your headaches could be from a benign tumor as well.  Doesn't have to be mets.  Headaches are really an incredibly painful problem.  I really wish you good luck.  Just keep in touch and ask questions with your medical providers until you get some satisfaction. 

                                                                                      Cindy VT
                                                                                      Participant

                                                                                        Did your neurologist due an MRI of your brain?  Your headaches could be from a benign tumor as well.  Doesn't have to be mets.  Headaches are really an incredibly painful problem.  I really wish you good luck.  Just keep in touch and ask questions with your medical providers until you get some satisfaction. 

                                                                                        MattF
                                                                                        Participant

                                                                                          Believe me i am or i try to enjoy life….

                                                                                          Difference is i do'nt feel great. I'm fatigued …still have vision and headache problems. see a Neurologist every 45 days pretty much..on a lot of meds for that.

                                                                                          The reason i asked the question …which i will put in another post also…..is i could swear the "contours of mt right armpit are different thatn the left" been that way for a few weeks.

                                                                                          I don't go back to oncologist for over a month.

                                                                                          I have heard at this point it is not a time to try and be tough…if something feels wrong check it….and then  others say you can't worry about everything.

                                                                                          mel123
                                                                                          Participant

                                                                                            My original SLB came back negative, and a year later my dermatologist felt a mass in my lymph nodes, so we biopsied again and it came back positive for melanoma – but I felt absolutely great, other than being able to physically feel a difference in the lymph nodes under both arms, there were no other indicators that anything was wrong. I think that after a cancer diagnosis, we tend to feel like any ache or pain or anything different at all is cancer related, but that's not necessarily the case. 

                                                                                            It was unclear to me whether or not I would have gotten scans, blood work and x-rays whether or not my derm had felt the mass, (that doctor's office was a hot mess and communication was terrible – I've since changed doctors!) but I will say that my blood work and x-rays were great, and the PET scan is what showed something in my lymph nodes (also note that just because something shows up in a PET scan doesn't mean it's cancer, they only know that after a biopsy). So because of that experience, I would suggest that you ask about follow up scans at the one year mark, maybe even 6 months (I can't remember if you said how long it's been so far). You can also feel your lymph nodes to make sure each side is the same. If one feels different, get it looked at. There are insurance requirements etc, but your doctor should be willing to order these tests if you feel like you need them, at least once for a follow up. If you doctor absolutely won't listen, then it's time for a new doctor. 

                                                                                            Aside from that, don't live in fear! Cancer takes so much away, but you are alive and well and should take advantage of that! There are stage IV survivors who are living life to the fullest, so why shouldn't you??

                                                                                            mel123
                                                                                            Participant

                                                                                              My original SLB came back negative, and a year later my dermatologist felt a mass in my lymph nodes, so we biopsied again and it came back positive for melanoma – but I felt absolutely great, other than being able to physically feel a difference in the lymph nodes under both arms, there were no other indicators that anything was wrong. I think that after a cancer diagnosis, we tend to feel like any ache or pain or anything different at all is cancer related, but that's not necessarily the case. 

                                                                                              It was unclear to me whether or not I would have gotten scans, blood work and x-rays whether or not my derm had felt the mass, (that doctor's office was a hot mess and communication was terrible – I've since changed doctors!) but I will say that my blood work and x-rays were great, and the PET scan is what showed something in my lymph nodes (also note that just because something shows up in a PET scan doesn't mean it's cancer, they only know that after a biopsy). So because of that experience, I would suggest that you ask about follow up scans at the one year mark, maybe even 6 months (I can't remember if you said how long it's been so far). You can also feel your lymph nodes to make sure each side is the same. If one feels different, get it looked at. There are insurance requirements etc, but your doctor should be willing to order these tests if you feel like you need them, at least once for a follow up. If you doctor absolutely won't listen, then it's time for a new doctor. 

                                                                                              Aside from that, don't live in fear! Cancer takes so much away, but you are alive and well and should take advantage of that! There are stage IV survivors who are living life to the fullest, so why shouldn't you??

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