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Need Help, Advice Please~melanoma in esophagus
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Need Help, Advice Please~melanoma in esophagus

› Forums › General Melanoma Community › Need Help, Advice Please~melanoma in esophagus

  • Post
    • August 10, 2012 at 1:41 am
    lrkg1234
    Participant

      I am writing on behalf of my husband, Scott, 54 years old.  Diagnosed with melanoma today. 

      It's a tumor in the esophagus, about 6 cm.  We are waiting on the CT scans, just got the pathology report and a GI Scope.

        We have no idea where to seek treatment.  We live in Indianapolis, but are willing to travel about anywhere. 

      We are not sure whether we should focus on a good thoracic surgeon or the rareness of the cancer aspect being so rare.  There is not much information out there. 

      I am writing on behalf of my husband, Scott, 54 years old.  Diagnosed with melanoma today. 

      It's a tumor in the esophagus, about 6 cm.  We are waiting on the CT scans, just got the pathology report and a GI Scope.

        We have no idea where to seek treatment.  We live in Indianapolis, but are willing to travel about anywhere. 

      We are not sure whether we should focus on a good thoracic surgeon or the rareness of the cancer aspect being so rare.  There is not much information out there. 

      So happy to find potential help.

      Lisa

    Viewing 14 reply threads
    • Replies
        • August 10, 2012 at 1:57 am
        Janner
        Participant

          Do they say the esophagus is the primary site?  Or is that unknown?  If it's the primary site, that is probably rare.  But if it is a metastasis from an unknown site, it's no different than other stage IV people on this site.  About 10% or so melanoma warriors never find a primary site.  Don't focus on rarity, find a melanoma center and melanoma specialist.  Melanoma doesn't have a lot of treatment options so you want to work with someone who sees melanoma all the time and has access to clinical trials.  I'm not sure what is the closest melanoma center to you, but that's what I'd be looking for.

          Best wishes,

          Janner

          • August 10, 2012 at 1:57 am
          Janner
          Participant

            Do they say the esophagus is the primary site?  Or is that unknown?  If it's the primary site, that is probably rare.  But if it is a metastasis from an unknown site, it's no different than other stage IV people on this site.  About 10% or so melanoma warriors never find a primary site.  Don't focus on rarity, find a melanoma center and melanoma specialist.  Melanoma doesn't have a lot of treatment options so you want to work with someone who sees melanoma all the time and has access to clinical trials.  I'm not sure what is the closest melanoma center to you, but that's what I'd be looking for.

            Best wishes,

            Janner

            • August 10, 2012 at 1:57 am
            Janner
            Participant

              Do they say the esophagus is the primary site?  Or is that unknown?  If it's the primary site, that is probably rare.  But if it is a metastasis from an unknown site, it's no different than other stage IV people on this site.  About 10% or so melanoma warriors never find a primary site.  Don't focus on rarity, find a melanoma center and melanoma specialist.  Melanoma doesn't have a lot of treatment options so you want to work with someone who sees melanoma all the time and has access to clinical trials.  I'm not sure what is the closest melanoma center to you, but that's what I'd be looking for.

              Best wishes,

              Janner

              • August 10, 2012 at 2:17 am
              teach
              Participant

                I am sorry about your husband's diagnosis.  I live near Indianapolis  I have a dear friend whose husband was diagnosed with stage iv melanoma.  Her husband went to the James Cancer Center at Ohio State in Columbus, Ohio for treatment.  His doctor was Kari Kendra.  He received very good care there. 

                This is a good place.  You will find a lot of support here.  Peace to you.

                • August 10, 2012 at 2:17 am
                teach
                Participant

                  I am sorry about your husband's diagnosis.  I live near Indianapolis  I have a dear friend whose husband was diagnosed with stage iv melanoma.  Her husband went to the James Cancer Center at Ohio State in Columbus, Ohio for treatment.  His doctor was Kari Kendra.  He received very good care there. 

                  This is a good place.  You will find a lot of support here.  Peace to you.

                  • August 10, 2012 at 2:17 am
                  teach
                  Participant

                    I am sorry about your husband's diagnosis.  I live near Indianapolis  I have a dear friend whose husband was diagnosed with stage iv melanoma.  Her husband went to the James Cancer Center at Ohio State in Columbus, Ohio for treatment.  His doctor was Kari Kendra.  He received very good care there. 

                    This is a good place.  You will find a lot of support here.  Peace to you.

                    • August 10, 2012 at 2:54 am
                    Gene_S
                    Participant

                      Hello Lisa,

                      My first thoughts are that I'm sorry to meet you here… that said

                      Positive Attitudes are the most important things to win the war on cancer!  I also can appreciate your post   " We live in Indianapolis, but are willing to travel about anywhere".  Me too… my thoughts exactly when I first started researching for a cure for my stage IV melanoma.

                      Here is the only recommendation in my "Ralph Moss report for melanoma" report for Indiana. You may want to contact the "Michiana Hermatology-Oncology at La Porte Hospital and Health Care". Please note that I know nothing about this reference but hope that it may help you with a starting point.  

                      Best wishes,

                      Gene

                      • August 10, 2012 at 2:54 am
                      Gene_S
                      Participant

                        Hello Lisa,

                        My first thoughts are that I'm sorry to meet you here… that said

                        Positive Attitudes are the most important things to win the war on cancer!  I also can appreciate your post   " We live in Indianapolis, but are willing to travel about anywhere".  Me too… my thoughts exactly when I first started researching for a cure for my stage IV melanoma.

                        Here is the only recommendation in my "Ralph Moss report for melanoma" report for Indiana. You may want to contact the "Michiana Hermatology-Oncology at La Porte Hospital and Health Care". Please note that I know nothing about this reference but hope that it may help you with a starting point.  

                        Best wishes,

                        Gene

                        • August 10, 2012 at 2:54 am
                        Gene_S
                        Participant

                          Hello Lisa,

                          My first thoughts are that I'm sorry to meet you here… that said

                          Positive Attitudes are the most important things to win the war on cancer!  I also can appreciate your post   " We live in Indianapolis, but are willing to travel about anywhere".  Me too… my thoughts exactly when I first started researching for a cure for my stage IV melanoma.

                          Here is the only recommendation in my "Ralph Moss report for melanoma" report for Indiana. You may want to contact the "Michiana Hermatology-Oncology at La Porte Hospital and Health Care". Please note that I know nothing about this reference but hope that it may help you with a starting point.  

                          Best wishes,

                          Gene

                          • August 10, 2012 at 9:45 am
                          lrkg1234
                          Participant

                            Dear Janner and all who have replied:

                             

                            Thanks so much  for the helpful information.  We just got the CT scan last night and are waiting to hear the results.  We don't know about the site or anything else, but the information was very helpful. 

                            Appreciate the help and advice from all who have answered, Lisa

                            • August 10, 2012 at 9:45 am
                            lrkg1234
                            Participant

                              Dear Janner and all who have replied:

                               

                              Thanks so much  for the helpful information.  We just got the CT scan last night and are waiting to hear the results.  We don't know about the site or anything else, but the information was very helpful. 

                              Appreciate the help and advice from all who have answered, Lisa

                              • August 10, 2012 at 9:45 am
                              lrkg1234
                              Participant

                                Dear Janner and all who have replied:

                                 

                                Thanks so much  for the helpful information.  We just got the CT scan last night and are waiting to hear the results.  We don't know about the site or anything else, but the information was very helpful. 

                                Appreciate the help and advice from all who have answered, Lisa

                                • August 12, 2012 at 10:43 pm
                                lrkg1234
                                Participant

                                  So far we are leaning towards Johns Hopkins.  We have family there and a place to stay which is very helpful.  Does anyone else have experience with Johns Hopkins.   I am confident about the surgeons, but want to make sure they are really good with the mucosal melanoma too. 

                                  We do not know anything other than that it's mucosal melanoma in the esophagus right now.  The CT scan will be read to us tomorrow evening when we meet with a local oncologist.

                                  Thanks and good luck to all who are fighting.  Lisa

                                  • August 12, 2012 at 10:43 pm
                                  lrkg1234
                                  Participant

                                    So far we are leaning towards Johns Hopkins.  We have family there and a place to stay which is very helpful.  Does anyone else have experience with Johns Hopkins.   I am confident about the surgeons, but want to make sure they are really good with the mucosal melanoma too. 

                                    We do not know anything other than that it's mucosal melanoma in the esophagus right now.  The CT scan will be read to us tomorrow evening when we meet with a local oncologist.

                                    Thanks and good luck to all who are fighting.  Lisa

                                      • August 13, 2012 at 8:16 pm
                                      Janner
                                      Participant

                                        Find JerryFromFauq 's profile and send him a message.  (There is a Contact tab where you can do this once you locate a person).  I think he's being treated in VA, but he also has mucosal melanoma (anal) and has been around the block a few times as far as that goes.  He'd be a good resource.  He used to be on here all the time, but I haven't seen him around much lately.  But I know he's willing to answer questions so send him a note.

                                        Best wishes,

                                        Janner

                                        • August 13, 2012 at 8:16 pm
                                        Janner
                                        Participant

                                          Find JerryFromFauq 's profile and send him a message.  (There is a Contact tab where you can do this once you locate a person).  I think he's being treated in VA, but he also has mucosal melanoma (anal) and has been around the block a few times as far as that goes.  He'd be a good resource.  He used to be on here all the time, but I haven't seen him around much lately.  But I know he's willing to answer questions so send him a note.

                                          Best wishes,

                                          Janner

                                          • August 13, 2012 at 8:16 pm
                                          Janner
                                          Participant

                                            Find JerryFromFauq 's profile and send him a message.  (There is a Contact tab where you can do this once you locate a person).  I think he's being treated in VA, but he also has mucosal melanoma (anal) and has been around the block a few times as far as that goes.  He'd be a good resource.  He used to be on here all the time, but I haven't seen him around much lately.  But I know he's willing to answer questions so send him a note.

                                            Best wishes,

                                            Janner

                                          • August 12, 2012 at 10:43 pm
                                          lrkg1234
                                          Participant

                                            So far we are leaning towards Johns Hopkins.  We have family there and a place to stay which is very helpful.  Does anyone else have experience with Johns Hopkins.   I am confident about the surgeons, but want to make sure they are really good with the mucosal melanoma too. 

                                            We do not know anything other than that it's mucosal melanoma in the esophagus right now.  The CT scan will be read to us tomorrow evening when we meet with a local oncologist.

                                            Thanks and good luck to all who are fighting.  Lisa

                                        Viewing 14 reply threads
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