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father diagnosed with melanoma

Forums General Melanoma Community father diagnosed with melanoma

  • Post
    dwhistonb
    Participant

      It appears that my family has joined the melanoma club.  The club no one wants to belong to!  My father had a spot taken off of his leg last month.  DIagnosed as melanoma.  Had surgery last week to remove the area and take the firs 3 lymph nodes from his groin area.  We just got the results of the biopsies of the lymph nodes – the melanoma has spread.  NOW where do we go from here?  Of course me being the organized one in the family started researching this afternoon (about an hour after speaking with me Dad) and came across this website and group.

      It appears that my family has joined the melanoma club.  The club no one wants to belong to!  My father had a spot taken off of his leg last month.  DIagnosed as melanoma.  Had surgery last week to remove the area and take the firs 3 lymph nodes from his groin area.  We just got the results of the biopsies of the lymph nodes – the melanoma has spread.  NOW where do we go from here?  Of course me being the organized one in the family started researching this afternoon (about an hour after speaking with me Dad) and came across this website and group. I am sure all of you know what the beginning felt like so I am hoping that through this group I can obtain information much quicker; especially since you have all been there before in one capacity or another.  Help??

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        JakeinNY
        Participant

          The biggest move is to find a great melanoma oncologist. Hopefully someone on this site can help you with that. I am from NY. If you were to go to NY by chance, see Dr. Anna Pavlick at NYU Cancer Center. Your dad is at least stage 3. I'm sure that they'll do a PET/CT scan to determine if there is any distant metastasis (stage 4). I personally would suggest changes in diet, if willing, a spiritual connection, much relaxation, and sufficient exercise.

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            dwhistonb
            Participant

              Hope tjhis posts.  This is the 1st time using a group or forum.  He had a PET scan done after the biopsy came back melanoma and it showed no other signs. Good?  Bad?  He goes in next month for the next surgery of removing more lymph nodes.  If it has spread to the lymph nodes does it make it stage IV.  Stage IV – just a matter of time stage short of a miracle????????????

               

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              dwhistonb
              Participant

                Hope tjhis posts.  This is the 1st time using a group or forum.  He had a PET scan done after the biopsy came back melanoma and it showed no other signs. Good?  Bad?  He goes in next month for the next surgery of removing more lymph nodes.  If it has spread to the lymph nodes does it make it stage IV.  Stage IV – just a matter of time stage short of a miracle????????????

                 

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              JakeinNY
              Participant

                The biggest move is to find a great melanoma oncologist. Hopefully someone on this site can help you with that. I am from NY. If you were to go to NY by chance, see Dr. Anna Pavlick at NYU Cancer Center. Your dad is at least stage 3. I'm sure that they'll do a PET/CT scan to determine if there is any distant metastasis (stage 4). I personally would suggest changes in diet, if willing, a spiritual connection, much relaxation, and sufficient exercise.

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                lhaley
                Participant

                  I'm sorry that you've had to join us.  I looked at your profile and saw that your dad is in Mobile AL.  I don't know if there are any mel specialists in your area.  I have found that I see 2 different oncologists. I have a local one and I travel for my melanoma speciaist. That way if I have an immediate issue I can be seen without the traveling issue. Most mel specialists are willing to cooperate if you have to travel.

                  The next step will be for your dad to have a PET/CT to see if there has been any additional spread. Hopefully there won't be. If it has stayed in the lymph region they will most likely remove more of the nodes and possibly radiation. Staging will have to be complete before they will discuss if there are any other treatments.  Were all 3 nodes melanoma?

                  When your dad goes to the Dr. for his next visit make sure that you go also! It's always better to have more than one set of ears.  The most important piece of advice I can give you is to get a copy of all scans on a CD and to get a copy of all reports. Your dad may have to go back to the hospital to get these. From this point on if he tells them he wants copies before the tests are done they usually will give him a copy of the scan before he leaves the hospital. The copy of the report he can get from his Dr. This way he can start building his records and if he goes to another Dr. he will be prepared. I have also found that the Dr. doesn't quite always tell you everything…..

                  Let us know what the testing shows and hopefully some thoughts will be given. Do remember though that we are not Doctors and we all have different opinions.

                  Linda

                  Stage IV since 06

                  stable

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                    dwhistonb
                    Participant

                      Linda,

                      Hope tjhis posts.  This is the 1st time using a group or forum.  He had a PET scan done after the biopsy came back melanoma and it showed no other signs. Good?  Bad?  He goes in next month for the next surgery of removing more lymph nodes.  If it has spread to the lymph nodes does it make it stage IV.  Stage IV – just a matter of time stage short of a miracle????????????

                       

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                      dwhistonb
                      Participant

                        Linda,

                        Hope tjhis posts.  This is the 1st time using a group or forum.  He had a PET scan done after the biopsy came back melanoma and it showed no other signs. Good?  Bad?  He goes in next month for the next surgery of removing more lymph nodes.  If it has spread to the lymph nodes does it make it stage IV.  Stage IV – just a matter of time stage short of a miracle????????????

                         

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                      lhaley
                      Participant

                        I'm sorry that you've had to join us.  I looked at your profile and saw that your dad is in Mobile AL.  I don't know if there are any mel specialists in your area.  I have found that I see 2 different oncologists. I have a local one and I travel for my melanoma speciaist. That way if I have an immediate issue I can be seen without the traveling issue. Most mel specialists are willing to cooperate if you have to travel.

                        The next step will be for your dad to have a PET/CT to see if there has been any additional spread. Hopefully there won't be. If it has stayed in the lymph region they will most likely remove more of the nodes and possibly radiation. Staging will have to be complete before they will discuss if there are any other treatments.  Were all 3 nodes melanoma?

                        When your dad goes to the Dr. for his next visit make sure that you go also! It's always better to have more than one set of ears.  The most important piece of advice I can give you is to get a copy of all scans on a CD and to get a copy of all reports. Your dad may have to go back to the hospital to get these. From this point on if he tells them he wants copies before the tests are done they usually will give him a copy of the scan before he leaves the hospital. The copy of the report he can get from his Dr. This way he can start building his records and if he goes to another Dr. he will be prepared. I have also found that the Dr. doesn't quite always tell you everything…..

                        Let us know what the testing shows and hopefully some thoughts will be given. Do remember though that we are not Doctors and we all have different opinions.

                        Linda

                        Stage IV since 06

                        stable

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                        dwhistonb
                        Participant

                          Trying to figure this forum thing out.  Apparently my answers to the 2 posts did not actually post.  Not sure where they went to.  I had the posts in my in box at AOL (just a notification???) and his reply from my e mail.  Then after not seeing my posts I have discovered this way to reply/post.  Heck I thought figuring out this cancer thing was hard!!!

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                          dwhistonb
                          Participant

                            Trying to figure this forum thing out.  Apparently my answers to the 2 posts did not actually post.  Not sure where they went to.  I had the posts in my in box at AOL (just a notification???) and his reply from my e mail.  Then after not seeing my posts I have discovered this way to reply/post.  Heck I thought figuring out this cancer thing was hard!!!

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                            JerryfromFauq
                            Participant

                              There are many wonderful people on the MPIP/MRF site.  Some have been here since the 1990's helping others battle this monster.

                              To reply to a particular response that someone has provided to you, you should click on the reply button within the box of their reply.

                              Do get your Father to a Melanoma Specialist  as his Oncologist.  There is too much going on in this field for even a specialist to be completely up to date.  A  general oncologist cannot keep up with everything.

                              Was his PET scan a full body scan or just of a particular portion of the body.  Melanoma can go anywhere in the body.  The most common progression is to the first lymph nodes then to move towards the lungs, but can also get into the bloodstream and take up residence anywhere.  Also remember that a PET scan bright spot does not always mean cancer.  A bright spot means that the sugar  in the PET has collected  in a spot.  I lit up in injury spots that I had from 20-30 years before. I knew I had a bad knee from a car wreck in Germany!  Bright spots mean this is an area to look at more closely.  Repeat CT scans tell if a spot is changing size (growing or what).

                              Does spread to nearby lymph nodes mean Stage IV. Nope, Stage III.  Distant lymph nodes or body organs, yes.

                              Does Stage III mean you have to pray for a miracle.  Nope, for luck and no farther spread.  For stage IV, the miracles do occur.  Quite a few of us say that we are individuals, not statistics, not yet anyway.  I was misdiagnosed for 3 1/2 years then 10 months after initial diagnosis went to stage IV.  Was told would have major breathing problems within 30 days and by statistics expect to be gone within 6 months.  This was in March 2007.  I still here bugging people.  My wife says I'm just too stubborn to die!  Charlie has been fighting as a stage IV warrier for almost 15 years now.  I know some people that have not had any more problems since treatment for their Stage IV disease 20 years ago. NED (no evidence of diseas) means the equipment does not show any tumors. Each person is different.  Melanoma is not  one disease, it may well be at least a dozen or a hundred different "diseases".  Each may require a different treatment.  They are working on ways to determine which DNA mutation ones tumor has so that the appropriate treatment can be discovered and provided.  Good luck.

                              Linda's advice about getting copies of all paperwork and reports is right on.  Having gotten that may be one of the reasons I am still here.  No delay then for you to get copies to anyone you want to get them.  REading them is also a good start on the education path you are now on.

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                              JerryfromFauq
                              Participant

                                There are many wonderful people on the MPIP/MRF site.  Some have been here since the 1990's helping others battle this monster.

                                To reply to a particular response that someone has provided to you, you should click on the reply button within the box of their reply.

                                Do get your Father to a Melanoma Specialist  as his Oncologist.  There is too much going on in this field for even a specialist to be completely up to date.  A  general oncologist cannot keep up with everything.

                                Was his PET scan a full body scan or just of a particular portion of the body.  Melanoma can go anywhere in the body.  The most common progression is to the first lymph nodes then to move towards the lungs, but can also get into the bloodstream and take up residence anywhere.  Also remember that a PET scan bright spot does not always mean cancer.  A bright spot means that the sugar  in the PET has collected  in a spot.  I lit up in injury spots that I had from 20-30 years before. I knew I had a bad knee from a car wreck in Germany!  Bright spots mean this is an area to look at more closely.  Repeat CT scans tell if a spot is changing size (growing or what).

                                Does spread to nearby lymph nodes mean Stage IV. Nope, Stage III.  Distant lymph nodes or body organs, yes.

                                Does Stage III mean you have to pray for a miracle.  Nope, for luck and no farther spread.  For stage IV, the miracles do occur.  Quite a few of us say that we are individuals, not statistics, not yet anyway.  I was misdiagnosed for 3 1/2 years then 10 months after initial diagnosis went to stage IV.  Was told would have major breathing problems within 30 days and by statistics expect to be gone within 6 months.  This was in March 2007.  I still here bugging people.  My wife says I'm just too stubborn to die!  Charlie has been fighting as a stage IV warrier for almost 15 years now.  I know some people that have not had any more problems since treatment for their Stage IV disease 20 years ago. NED (no evidence of diseas) means the equipment does not show any tumors. Each person is different.  Melanoma is not  one disease, it may well be at least a dozen or a hundred different "diseases".  Each may require a different treatment.  They are working on ways to determine which DNA mutation ones tumor has so that the appropriate treatment can be discovered and provided.  Good luck.

                                Linda's advice about getting copies of all paperwork and reports is right on.  Having gotten that may be one of the reasons I am still here.  No delay then for you to get copies to anyone you want to get them.  REading them is also a good start on the education path you are now on.

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