MRF-Logo2019-Horizontal-RGB
Thought I understood, now confused….
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Thought I understood, now confused….

› Forums › Mucosal Melanoma Community › Thought I understood, now confused….

  • Post
    • January 29, 2013 at 5:29 pm
    buckytom
    Participant

      Recently diagnosed with melanoma, found in lymph node in right neck. After PET Scan and visit to dermatologist no primary found. Had neck dissection on 1/21/13 – one additional lymph was found with melanoma – all positive…right? Refferred to radation oncologist (after dealing with my surgical oncologist and consultation with medical oncologist) and he says the primary may be in my eyes or in my throat (mucosal). I have absolutely no symptoms in those areas.

      Recently diagnosed with melanoma, found in lymph node in right neck. After PET Scan and visit to dermatologist no primary found. Had neck dissection on 1/21/13 – one additional lymph was found with melanoma – all positive…right? Refferred to radation oncologist (after dealing with my surgical oncologist and consultation with medical oncologist) and he says the primary may be in my eyes or in my throat (mucosal). I have absolutely no symptoms in those areas.

      So – does anyone have any experience with this type of a diagnosis? After the surgery it was sounding like it was limited in its spread and now this. I am very confused – any input or experiences would be greatly appreciated.

      Thanks!

    Viewing 14 reply threads
    • Replies
        • January 29, 2013 at 5:38 pm
        Wolverine
        Participant

          I am new to this as well.  My occurance of Melanoma first showed up in the form of a tumor that had taken over several lymph nodes under my right arm.  I have had a second surgery to remove the other nodes under that arm.  I too was unknown primary but they had me go to an opthamologist to make sure it wasn't occular.  They have also checked  me to see if it was mucal.  I am now on Interferon for going on 3 months.  Hope this helps.

          • January 29, 2013 at 5:38 pm
          Wolverine
          Participant

            I am new to this as well.  My occurance of Melanoma first showed up in the form of a tumor that had taken over several lymph nodes under my right arm.  I have had a second surgery to remove the other nodes under that arm.  I too was unknown primary but they had me go to an opthamologist to make sure it wasn't occular.  They have also checked  me to see if it was mucal.  I am now on Interferon for going on 3 months.  Hope this helps.

              • January 29, 2013 at 5:47 pm
              buckytom
              Participant

                Thanks Wolverine – helpful. Sounds like docs are just being thorough to see if they can find primary.

                If I can ask – how are your Interferon treatments going? Have the side effects been pretty standard?

                Thanks!

                • January 29, 2013 at 8:46 pm
                Wolverine
                Participant

                  I entered a clinical trial to test low-dose ipi and high dose ipi versus standard of care.  I drew the interferon straw.  4 weeks of infusions monday through Friday and now I am on the 3 times a week self injection.  It caused depression, skin rashes, extreme fatigue, and various others.  I am still working but it has been difficult.  They took me off for one week to check out my eyes since they are always red and dry.  I have felt great since I temporarily stopped last week but I go back this week to the treatment.  I am stage 3C at this point and just had my scans last week and there were no tumors and the scan was clear.  

                  • January 29, 2013 at 8:46 pm
                  Wolverine
                  Participant

                    I entered a clinical trial to test low-dose ipi and high dose ipi versus standard of care.  I drew the interferon straw.  4 weeks of infusions monday through Friday and now I am on the 3 times a week self injection.  It caused depression, skin rashes, extreme fatigue, and various others.  I am still working but it has been difficult.  They took me off for one week to check out my eyes since they are always red and dry.  I have felt great since I temporarily stopped last week but I go back this week to the treatment.  I am stage 3C at this point and just had my scans last week and there were no tumors and the scan was clear.  

                    • January 29, 2013 at 8:46 pm
                    Wolverine
                    Participant

                      I entered a clinical trial to test low-dose ipi and high dose ipi versus standard of care.  I drew the interferon straw.  4 weeks of infusions monday through Friday and now I am on the 3 times a week self injection.  It caused depression, skin rashes, extreme fatigue, and various others.  I am still working but it has been difficult.  They took me off for one week to check out my eyes since they are always red and dry.  I have felt great since I temporarily stopped last week but I go back this week to the treatment.  I am stage 3C at this point and just had my scans last week and there were no tumors and the scan was clear.  

                      • January 29, 2013 at 5:47 pm
                      buckytom
                      Participant

                        Thanks Wolverine – helpful. Sounds like docs are just being thorough to see if they can find primary.

                        If I can ask – how are your Interferon treatments going? Have the side effects been pretty standard?

                        Thanks!

                        • January 29, 2013 at 5:47 pm
                        buckytom
                        Participant

                          Thanks Wolverine – helpful. Sounds like docs are just being thorough to see if they can find primary.

                          If I can ask – how are your Interferon treatments going? Have the side effects been pretty standard?

                          Thanks!

                        • January 29, 2013 at 5:38 pm
                        Wolverine
                        Participant

                          I am new to this as well.  My occurance of Melanoma first showed up in the form of a tumor that had taken over several lymph nodes under my right arm.  I have had a second surgery to remove the other nodes under that arm.  I too was unknown primary but they had me go to an opthamologist to make sure it wasn't occular.  They have also checked  me to see if it was mucal.  I am now on Interferon for going on 3 months.  Hope this helps.

                          • January 29, 2013 at 7:04 pm
                          Janner
                          Participant

                            Did the radiation oncologist really have any reason to suggest mucosal or ocular melanoma?  Often times, those types go directly to organs and not to local lymph nodes, so maybe the doctor was just throwing out options.  Realistically, there isn't much difference in treatment whatever the source.  I'd probably defer to the medical onc for his opinion over the rad onc in this matter.  Radiation isn't typically done on melanoma because it isn't overly effective.  It can be done to minimize local recurrence in some cases.

                            Keep us updated!

                            Janner

                            • January 29, 2013 at 7:04 pm
                            Janner
                            Participant

                              Did the radiation oncologist really have any reason to suggest mucosal or ocular melanoma?  Often times, those types go directly to organs and not to local lymph nodes, so maybe the doctor was just throwing out options.  Realistically, there isn't much difference in treatment whatever the source.  I'd probably defer to the medical onc for his opinion over the rad onc in this matter.  Radiation isn't typically done on melanoma because it isn't overly effective.  It can be done to minimize local recurrence in some cases.

                              Keep us updated!

                              Janner

                              • January 29, 2013 at 7:04 pm
                              Janner
                              Participant

                                Did the radiation oncologist really have any reason to suggest mucosal or ocular melanoma?  Often times, those types go directly to organs and not to local lymph nodes, so maybe the doctor was just throwing out options.  Realistically, there isn't much difference in treatment whatever the source.  I'd probably defer to the medical onc for his opinion over the rad onc in this matter.  Radiation isn't typically done on melanoma because it isn't overly effective.  It can be done to minimize local recurrence in some cases.

                                Keep us updated!

                                Janner

                                • January 29, 2013 at 7:05 pm
                                Phil S
                                Participant
                                  Something seems odd, first of all I wouldn’t listen to a radiation oncologist over your other two doctors,their job is important but narrow in focus. Ocular melanoma almost always spreads to the liver first, and a simple eye exam will quickly determine whether you have an eye melanoma, sounds unlikely! I would make sure you are dealing with an oncologist who specializes in melanoma. Do you have a growth in your throat? Did the PET/CAT scans show anything in that area? Go back and talk with your medical oncologist, and review your next steps! Believe me, three doctors can all have three different opinions on the same case, don’t get your head turned around! Stay focused on staying healthy! Best wishes, Valerie (Phil’s wife)
                                    • January 30, 2013 at 3:10 am
                                    buckytom
                                    Participant

                                      Thank you all – very helpful to get this information. I do not have any growth in my throat, no symptoms at all. Just seemed to want to find a primary. I did talk to my medical oncolgist and he blew it off. I am going to Mayo to get a second opinion at this point, the oncologists here are not specialists in Melanoma, and based on the information I have read here I need that expertise. 

                                      Thank you all again, this forum is a wonderful place to get information and input.

                                      Thanks! – Tom

                                      • January 30, 2013 at 3:10 am
                                      buckytom
                                      Participant

                                        Thank you all – very helpful to get this information. I do not have any growth in my throat, no symptoms at all. Just seemed to want to find a primary. I did talk to my medical oncolgist and he blew it off. I am going to Mayo to get a second opinion at this point, the oncologists here are not specialists in Melanoma, and based on the information I have read here I need that expertise. 

                                        Thank you all again, this forum is a wonderful place to get information and input.

                                        Thanks! – Tom

                                        • January 30, 2013 at 3:10 am
                                        buckytom
                                        Participant

                                          Thank you all – very helpful to get this information. I do not have any growth in my throat, no symptoms at all. Just seemed to want to find a primary. I did talk to my medical oncolgist and he blew it off. I am going to Mayo to get a second opinion at this point, the oncologists here are not specialists in Melanoma, and based on the information I have read here I need that expertise. 

                                          Thank you all again, this forum is a wonderful place to get information and input.

                                          Thanks! – Tom

                                        • January 29, 2013 at 7:05 pm
                                        Phil S
                                        Participant
                                          Something seems odd, first of all I wouldn’t listen to a radiation oncologist over your other two doctors,their job is important but narrow in focus. Ocular melanoma almost always spreads to the liver first, and a simple eye exam will quickly determine whether you have an eye melanoma, sounds unlikely! I would make sure you are dealing with an oncologist who specializes in melanoma. Do you have a growth in your throat? Did the PET/CAT scans show anything in that area? Go back and talk with your medical oncologist, and review your next steps! Believe me, three doctors can all have three different opinions on the same case, don’t get your head turned around! Stay focused on staying healthy! Best wishes, Valerie (Phil’s wife)
                                          • January 29, 2013 at 7:05 pm
                                          Phil S
                                          Participant
                                            Something seems odd, first of all I wouldn’t listen to a radiation oncologist over your other two doctors,their job is important but narrow in focus. Ocular melanoma almost always spreads to the liver first, and a simple eye exam will quickly determine whether you have an eye melanoma, sounds unlikely! I would make sure you are dealing with an oncologist who specializes in melanoma. Do you have a growth in your throat? Did the PET/CAT scans show anything in that area? Go back and talk with your medical oncologist, and review your next steps! Believe me, three doctors can all have three different opinions on the same case, don’t get your head turned around! Stay focused on staying healthy! Best wishes, Valerie (Phil’s wife)
                                            • January 30, 2013 at 1:32 am
                                            MichaelFL
                                            Participant

                                              I doubt it is ocular but you may want to go ahead and have your eyes checked anyway. Mine did. But at this point it does not really matter where it started as you know where it now is and you should concentrate on treatment options instead. More than likely the doc is just throwing out thoughts, but betting it is a melanoma that has regressed from your skin in the head neck or chest area and can't be found.

                                              • January 30, 2013 at 1:32 am
                                              MichaelFL
                                              Participant

                                                I doubt it is ocular but you may want to go ahead and have your eyes checked anyway. Mine did. But at this point it does not really matter where it started as you know where it now is and you should concentrate on treatment options instead. More than likely the doc is just throwing out thoughts, but betting it is a melanoma that has regressed from your skin in the head neck or chest area and can't be found.

                                                • January 30, 2013 at 1:32 am
                                                MichaelFL
                                                Participant

                                                  I doubt it is ocular but you may want to go ahead and have your eyes checked anyway. Mine did. But at this point it does not really matter where it started as you know where it now is and you should concentrate on treatment options instead. More than likely the doc is just throwing out thoughts, but betting it is a melanoma that has regressed from your skin in the head neck or chest area and can't be found.

                                                  • January 30, 2013 at 5:43 am
                                                  JerryfromFauq
                                                  Participant

                                                    If the priomary started in the mucosal tract, there is a 30% chance that your melanoma contains the c-kit oncoprotein and/or C-kit DNA Mutation.  This makes a major diference in the way it is treated. (I have mucosal melanoma.)  I highly recommend at least the local lab run the c-kit onco-protein test for unknown primaries.  Mucosual melanoma's tend to metastisize to the lungs.

                                                    Ocular melanomas tend to metastisize to the liver.

                                                    I don't know where the radiatologist is coming from.

                                                     

                                                    • January 30, 2013 at 5:43 am
                                                    JerryfromFauq
                                                    Participant

                                                      If the priomary started in the mucosal tract, there is a 30% chance that your melanoma contains the c-kit oncoprotein and/or C-kit DNA Mutation.  This makes a major diference in the way it is treated. (I have mucosal melanoma.)  I highly recommend at least the local lab run the c-kit onco-protein test for unknown primaries.  Mucosual melanoma's tend to metastisize to the lungs.

                                                      Ocular melanomas tend to metastisize to the liver.

                                                      I don't know where the radiatologist is coming from.

                                                       

                                                      • January 30, 2013 at 5:43 am
                                                      JerryfromFauq
                                                      Participant

                                                        If the priomary started in the mucosal tract, there is a 30% chance that your melanoma contains the c-kit oncoprotein and/or C-kit DNA Mutation.  This makes a major diference in the way it is treated. (I have mucosal melanoma.)  I highly recommend at least the local lab run the c-kit onco-protein test for unknown primaries.  Mucosual melanoma's tend to metastisize to the lungs.

                                                        Ocular melanomas tend to metastisize to the liver.

                                                        I don't know where the radiatologist is coming from.

                                                         

                                                    Viewing 14 reply threads

                                                    Tagged: 

                                                    • You must be logged in to reply to this topic.
                                                    About the MRF Patient Forum

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

                                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.