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What happens if no source is found (only lymph nodes)

Forums Ocular Melanoma Community What happens if no source is found (only lymph nodes)

  • Post
    Brittany1999
    Participant

      Hi,

      [First posts are always tough because I'm searching for answers but not providing benefit to others.]

      My melanoma was diagnosed on Monday January 16, 2017, so I am very early in my understanding of everything. My doctors are great and are helping me at every step/day of the way.

      My melanoma was diagnosed based on a lymph node excision (neck area below the ear) which tested positive for melanoma. The lymph node had been swollen for a few months and had not responded to antibiotics, so the belief was it may show a positive result for Lymphoma (that was the reason for the excision).

      My question to others with knowledge or experience is this: what if no skin-based source for the melanoma is found? Is that a common occurance?

      (Dermatologist did a full body review on Jan. 18th. Four moles were removed but tested negative (normal).

      (Opthamologist appt will be on Jan. 26th to check for ocular melanoma).

      (PET scan with CT scan on Jan 19th with no signs of melanoma elsewhere in my body. Also MRI of the brain was negative (normal).)

      Thank you!

    Viewing 20 reply threads
    • Replies
        Polymath
        Participant

          Sorry to hear of the diagnosis.  But you've come to the right place for both advice, and support.

          As for your situation it's called "unknown primary" and while its not as common, its certainly not unheard of.  Others here may share thier stories.

          Gary

          Polymath
          Participant

            Sorry to hear of the diagnosis.  But you've come to the right place for both advice, and support.

            As for your situation it's called "unknown primary" and while its not as common, its certainly not unheard of.  Others here may share thier stories.

            Gary

            Polymath
            Participant

              Sorry to hear of the diagnosis.  But you've come to the right place for both advice, and support.

              As for your situation it's called "unknown primary" and while its not as common, its certainly not unheard of.  Others here may share thier stories.

              Gary

              casagrayson
              Participant

                I'm sorry you have to be here, but know you will get a lot of support and good information.  I'm pretty sure lymph node involvement with no primary still puts you at Stage 3.  That will make you eligible for a lot of trials. The most important thing you can do is make sure you are seeing a melanoma specialist.  Where are you located?

                casagrayson
                Participant

                  I'm sorry you have to be here, but know you will get a lot of support and good information.  I'm pretty sure lymph node involvement with no primary still puts you at Stage 3.  That will make you eligible for a lot of trials. The most important thing you can do is make sure you are seeing a melanoma specialist.  Where are you located?

                  casagrayson
                  Participant

                    I'm sorry you have to be here, but know you will get a lot of support and good information.  I'm pretty sure lymph node involvement with no primary still puts you at Stage 3.  That will make you eligible for a lot of trials. The most important thing you can do is make sure you are seeing a melanoma specialist.  Where are you located?

                    Charlie S
                    Participant

                      I was diagnosed Stage III with an unknown primary in June of 1987.

                      For several months I had had a growing lump in my right armpit.

                      For those months I was on a regimen of antibiotics.

                      Still the lump grew.   Because my Grandfather died due to complications of Lymphoma. surgery was decided with Lymphoma being suspect.

                      Following surgery, it took a long time (remember this is 1987) for a definitive diagnosis using the  electron microscope at Duke University to come back melanoma……..and after many examinations……………………there was no knowm primary.

                      I was told that three things were possible.

                      The primary has not yet been found.

                      There was no primary.

                      There was at one time a primary but it  had spontaneously regressed.

                      Supposedly unknown primary occurs around 2% of the time.

                      So, you are not alone.

                      Cheers,

                      Charlie S

                       

                      Charlie S
                      Participant

                        I was diagnosed Stage III with an unknown primary in June of 1987.

                        For several months I had had a growing lump in my right armpit.

                        For those months I was on a regimen of antibiotics.

                        Still the lump grew.   Because my Grandfather died due to complications of Lymphoma. surgery was decided with Lymphoma being suspect.

                        Following surgery, it took a long time (remember this is 1987) for a definitive diagnosis using the  electron microscope at Duke University to come back melanoma……..and after many examinations……………………there was no knowm primary.

                        I was told that three things were possible.

                        The primary has not yet been found.

                        There was no primary.

                        There was at one time a primary but it  had spontaneously regressed.

                        Supposedly unknown primary occurs around 2% of the time.

                        So, you are not alone.

                        Cheers,

                        Charlie S

                         

                        Charlie S
                        Participant

                          I was diagnosed Stage III with an unknown primary in June of 1987.

                          For several months I had had a growing lump in my right armpit.

                          For those months I was on a regimen of antibiotics.

                          Still the lump grew.   Because my Grandfather died due to complications of Lymphoma. surgery was decided with Lymphoma being suspect.

                          Following surgery, it took a long time (remember this is 1987) for a definitive diagnosis using the  electron microscope at Duke University to come back melanoma……..and after many examinations……………………there was no knowm primary.

                          I was told that three things were possible.

                          The primary has not yet been found.

                          There was no primary.

                          There was at one time a primary but it  had spontaneously regressed.

                          Supposedly unknown primary occurs around 2% of the time.

                          So, you are not alone.

                          Cheers,

                          Charlie S

                           

                          Fen
                          Participant

                            My situation was exactly the same 10 years ago.  An enlarged lymph node in my parotid gland was found to be melanoma.  The assumption was that a primary had regressed, i.e. my immune system had fought it off.  I did 6 months of interferon and have been NED ever since.  Honestly, though, I don't think the interferon did anything and I would have been NED even if I had chosen watch and wait – no way to know that of course.   

                            I have a vague memory of reading that about 10% of melanoma patients had an unknown primary.  In any case, I'm sorry you're here but you will find this board to be filled with knowledgeable, kind people.  IMO you are at a difficult point in the process – so new and so scary but the results of your PET are great.  It is crucial that you be treated by a melanoma specialist – not a general oncologist.      Fen

                            Fen
                            Participant

                              My situation was exactly the same 10 years ago.  An enlarged lymph node in my parotid gland was found to be melanoma.  The assumption was that a primary had regressed, i.e. my immune system had fought it off.  I did 6 months of interferon and have been NED ever since.  Honestly, though, I don't think the interferon did anything and I would have been NED even if I had chosen watch and wait – no way to know that of course.   

                              I have a vague memory of reading that about 10% of melanoma patients had an unknown primary.  In any case, I'm sorry you're here but you will find this board to be filled with knowledgeable, kind people.  IMO you are at a difficult point in the process – so new and so scary but the results of your PET are great.  It is crucial that you be treated by a melanoma specialist – not a general oncologist.      Fen

                              Fen
                              Participant

                                My situation was exactly the same 10 years ago.  An enlarged lymph node in my parotid gland was found to be melanoma.  The assumption was that a primary had regressed, i.e. my immune system had fought it off.  I did 6 months of interferon and have been NED ever since.  Honestly, though, I don't think the interferon did anything and I would have been NED even if I had chosen watch and wait – no way to know that of course.   

                                I have a vague memory of reading that about 10% of melanoma patients had an unknown primary.  In any case, I'm sorry you're here but you will find this board to be filled with knowledgeable, kind people.  IMO you are at a difficult point in the process – so new and so scary but the results of your PET are great.  It is crucial that you be treated by a melanoma specialist – not a general oncologist.      Fen

                                Linny
                                Participant

                                  As already was pointed out, you most likely have a melanoma with an unknown primary (MUP). My situation was like Charlie's — it was found in a lymph node in my arm pit. I was told it could be either lymphoma (which my father had) or breast cancer. I was shocked to hear that I had melanoma because I never had a mole. 

                                  Sounds like your doctors are going in the right direction with all the scans and the check for ocular melanoma. Hopefully after the exam on the 26th you will be given the "all clear".

                                  MUP is a strange entity and it occurs in less than 10% of those diagnosed with melanoma.

                                  Here's an article you might want to take a look at it. The article was written in 2012 and you should know that the treatment options mentioned reflect what was available at that time. 

                                  https://www.utmb.edu/otoref/grnds/melanoma-unk-primary-2012-11-28/melanoma-unk-primary-2012-11.pdf

                                   

                                   

                                  Linny
                                  Participant

                                    As already was pointed out, you most likely have a melanoma with an unknown primary (MUP). My situation was like Charlie's — it was found in a lymph node in my arm pit. I was told it could be either lymphoma (which my father had) or breast cancer. I was shocked to hear that I had melanoma because I never had a mole. 

                                    Sounds like your doctors are going in the right direction with all the scans and the check for ocular melanoma. Hopefully after the exam on the 26th you will be given the "all clear".

                                    MUP is a strange entity and it occurs in less than 10% of those diagnosed with melanoma.

                                    Here's an article you might want to take a look at it. The article was written in 2012 and you should know that the treatment options mentioned reflect what was available at that time. 

                                    https://www.utmb.edu/otoref/grnds/melanoma-unk-primary-2012-11-28/melanoma-unk-primary-2012-11.pdf

                                     

                                     

                                    Linny
                                    Participant

                                      As already was pointed out, you most likely have a melanoma with an unknown primary (MUP). My situation was like Charlie's — it was found in a lymph node in my arm pit. I was told it could be either lymphoma (which my father had) or breast cancer. I was shocked to hear that I had melanoma because I never had a mole. 

                                      Sounds like your doctors are going in the right direction with all the scans and the check for ocular melanoma. Hopefully after the exam on the 26th you will be given the "all clear".

                                      MUP is a strange entity and it occurs in less than 10% of those diagnosed with melanoma.

                                      Here's an article you might want to take a look at it. The article was written in 2012 and you should know that the treatment options mentioned reflect what was available at that time. 

                                      https://www.utmb.edu/otoref/grnds/melanoma-unk-primary-2012-11-28/melanoma-unk-primary-2012-11.pdf

                                       

                                       

                                      snow white
                                      Participant

                                        Dad was diagnosed in August with NO PRIMARY found.  He went in for a CT scan as a follow up to his colon cancer surgery.  CT came back with a spot on his lung, surgeon decided to remove  it and pathology came back melanoma.  He ended up having it in the Brain (15 mets), spleen, lower bowel and upper right thigh.  Hang in there!

                                        Jen

                                        snow white
                                        Participant

                                          Dad was diagnosed in August with NO PRIMARY found.  He went in for a CT scan as a follow up to his colon cancer surgery.  CT came back with a spot on his lung, surgeon decided to remove  it and pathology came back melanoma.  He ended up having it in the Brain (15 mets), spleen, lower bowel and upper right thigh.  Hang in there!

                                          Jen

                                          snow white
                                          Participant

                                            Dad was diagnosed in August with NO PRIMARY found.  He went in for a CT scan as a follow up to his colon cancer surgery.  CT came back with a spot on his lung, surgeon decided to remove  it and pathology came back melanoma.  He ended up having it in the Brain (15 mets), spleen, lower bowel and upper right thigh.  Hang in there!

                                            Jen

                                            dbJoe
                                            Participant

                                              Same boat, here.

                                              dbJoe
                                              Participant

                                                Same boat, here.

                                                dbJoe
                                                Participant

                                                  Same boat, here.

                                                    dbJoe
                                                    Participant

                                                      New to posting here as well, I really had a bit more to say. Our situations are similar, i had two areas of lymph nodes affected, left supraclavicular (neck, collar bone) and left axillary (armpit). My official diagnosis is "melanoma of face, scalp, or neck". After surgeries in February 2015 (two lympectomies, four days apart, brutal) I did a round of ipi (not too bad, rode my motorcycle to the clinic, kept my hair), PD-1 therapy not being yet approved. Since then I've had a few dots sliced & diced, no suface melanomas found, but I did get to have a basal cell carcinoma excised from my nose. I call that my "Extra Bonus Cancer".  I have regular CT and occaisional MRI scans, had a scare with two sub-centimeter nodules in left lung, but they were not visible on subsequent image. I'm probably looking forward to nivolumab. I guess what I'm saying is that treatment is advancing, and it appears to be WORKING! Learn everything you can. If you encounter a doctor who is challenged by your research, get another, possibly excepting surgeons. My experience with my doctors has been great. Their staffs, not so much. Overall, I feel lucky, and greet every day with hope and a little nausea!

                                                       

                                                       

                                                      dbJoe
                                                      Participant

                                                        New to posting here as well, I really had a bit more to say. Our situations are similar, i had two areas of lymph nodes affected, left supraclavicular (neck, collar bone) and left axillary (armpit). My official diagnosis is "melanoma of face, scalp, or neck". After surgeries in February 2015 (two lympectomies, four days apart, brutal) I did a round of ipi (not too bad, rode my motorcycle to the clinic, kept my hair), PD-1 therapy not being yet approved. Since then I've had a few dots sliced & diced, no suface melanomas found, but I did get to have a basal cell carcinoma excised from my nose. I call that my "Extra Bonus Cancer".  I have regular CT and occaisional MRI scans, had a scare with two sub-centimeter nodules in left lung, but they were not visible on subsequent image. I'm probably looking forward to nivolumab. I guess what I'm saying is that treatment is advancing, and it appears to be WORKING! Learn everything you can. If you encounter a doctor who is challenged by your research, get another, possibly excepting surgeons. My experience with my doctors has been great. Their staffs, not so much. Overall, I feel lucky, and greet every day with hope and a little nausea!

                                                         

                                                         

                                                        dbJoe
                                                        Participant

                                                          New to posting here as well, I really had a bit more to say. Our situations are similar, i had two areas of lymph nodes affected, left supraclavicular (neck, collar bone) and left axillary (armpit). My official diagnosis is "melanoma of face, scalp, or neck". After surgeries in February 2015 (two lympectomies, four days apart, brutal) I did a round of ipi (not too bad, rode my motorcycle to the clinic, kept my hair), PD-1 therapy not being yet approved. Since then I've had a few dots sliced & diced, no suface melanomas found, but I did get to have a basal cell carcinoma excised from my nose. I call that my "Extra Bonus Cancer".  I have regular CT and occaisional MRI scans, had a scare with two sub-centimeter nodules in left lung, but they were not visible on subsequent image. I'm probably looking forward to nivolumab. I guess what I'm saying is that treatment is advancing, and it appears to be WORKING! Learn everything you can. If you encounter a doctor who is challenged by your research, get another, possibly excepting surgeons. My experience with my doctors has been great. Their staffs, not so much. Overall, I feel lucky, and greet every day with hope and a little nausea!

                                                           

                                                           

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