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confused daughter

Forums General Melanoma Community confused daughter

  • Post
    merbrankat
    Participant

      My father recently was diagnosed with metastatic melanoma stage 4.  It was discovered during a routine biopsy on his head.  He has had a pet scan and it shows no attachment of any kind to his body.  How is it possible to be at stage 4 but not have anything showing in the lymph nodes, organs, etc.?  He is now recieving 6 weeks of radiation on his head.  He was told this was to hopefuly kill anymore spots.  Again I am confused.  To my understanding Metastatic melanoma cannot be cured.  What am I missing? 

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    • Replies
        Janner
        Participant

          So, the question is about the biopsy.  Was the lesion on his head considered the primary location?  Does it have depth/Clark's Level, mitosis, ulceration?  Or is the lesion considered metastatic?

          Clark's Level IV is a description of how deep a lesion has penetrated into the skin layers.  It is OFTEN confused for stage by the newly diagnosed because both use Roman numerals. 

          However, if the lesion is considered metastatic – that means it came from somewhere but the primary is unknown.  Often times, those folks are considered stage III, not stage IV.  But it is a bit of a guess because staging depends on the location of the primary.

          So my question is, does your father have a copy of his biopsy pathology report.  Without that, it's hard to comment.  There are different scenarios that could be involved here and you haven't given us enough information.  If you had the pathology report, that would most likely clear up most of the confusion.

          Janner
          Participant

            So, the question is about the biopsy.  Was the lesion on his head considered the primary location?  Does it have depth/Clark's Level, mitosis, ulceration?  Or is the lesion considered metastatic?

            Clark's Level IV is a description of how deep a lesion has penetrated into the skin layers.  It is OFTEN confused for stage by the newly diagnosed because both use Roman numerals. 

            However, if the lesion is considered metastatic – that means it came from somewhere but the primary is unknown.  Often times, those folks are considered stage III, not stage IV.  But it is a bit of a guess because staging depends on the location of the primary.

            So my question is, does your father have a copy of his biopsy pathology report.  Without that, it's hard to comment.  There are different scenarios that could be involved here and you haven't given us enough information.  If you had the pathology report, that would most likely clear up most of the confusion.

            Janner
            Participant

              So, the question is about the biopsy.  Was the lesion on his head considered the primary location?  Does it have depth/Clark's Level, mitosis, ulceration?  Or is the lesion considered metastatic?

              Clark's Level IV is a description of how deep a lesion has penetrated into the skin layers.  It is OFTEN confused for stage by the newly diagnosed because both use Roman numerals. 

              However, if the lesion is considered metastatic – that means it came from somewhere but the primary is unknown.  Often times, those folks are considered stage III, not stage IV.  But it is a bit of a guess because staging depends on the location of the primary.

              So my question is, does your father have a copy of his biopsy pathology report.  Without that, it's hard to comment.  There are different scenarios that could be involved here and you haven't given us enough information.  If you had the pathology report, that would most likely clear up most of the confusion.

                merbrankat
                Participant

                  The lesion was on the top of his head.  He has had melanoma surgery many times in that area along with plastic surgery.  They are considering it the primary site.  Unknown about the clark level.  I have a feeling I am not being told everything truthfully.  Every thing i have read about Metastatic melanoma is just the opposite of what they are being told.  Stage 4 was biopsied 2xs from 2 differed labs.  Same conclusion.

                  Janner
                  Participant

                    You don't typically biopsy stage IV.  Staging is systemic analysis of the disease and usually indicated by the doctor.  Pathologists read tissue and therefore don't typically stage because they do not know the status of disease elsewhere.  That's why pathologists say Clark's Level IV (deep layer of skin) but not stage IV.  Stage IV is either organ involvement OR distant metastasis.  You biopsy Clark's Level IV.   If this is his primary site, it isn't distant mets and it isn't organ involvement.  That implies stage I or more likely stage II.  Radiation might be done because the lesion is deep and the margins not clear.  Has he ever had a sentinel lymph node biopsy?  Basically, have the lymph nodes been surgically tested?  PET scans don't show microscopic disease.  And finally, is he seeing a melanoma specialist?  Because that is the most important thing.  If you are not getting the answers you need, a second opinion is in order. 

                    Janner
                    Participant

                      So to hopefully make this maybe a bit more clear:

                      A biopsy of the skin can say two things:  This is the melanoma primary or this is a metastatic lesion. 

                      Since you indicate this is the melanoma primary – the biopsy does NOT say stage IV.  A skin biopsy can only report about the skin being looked at and can't report anything else.  So it looks at what is being removed and describes that lesion – not what is happening anywhere else in the body.  Like I stated above, stage IV is organ involvement or distant mets and a skin pathology report that is describing a primary site cannot report on either of the 2 stage IV criteria.  So it can't say stage IV when describing a primary.   Given the fact they are still trying to manage this surgically – maybe to get better margins – that again that implies that this is a stage I or stage II lesion, not stage IV.  Nothing you describe fits the stage IV scenario so far unless there is missing information.  The missing piece is whether or not his lymph nodes have been tested – that is where you get the stage III diagnosis.

                      merbrankat
                      Participant

                        Thank you for your help.

                        I am sorry if i didnt make myself clear the first time.  During a routine removal of what the doctor thought was a cyst like growth on his head it was biopsied.  The doctor who recieved the report  said it was metastatic melanoma.  My father  was then referred to the Moffitt Center.  The growth was sent out again to a different lab.   When the second lab report was sent back the new doctor also said it was metastatic melanoma.  To my understanding isn't metastatic cancer considered stage 4?  He has had blood work, PET scan, just had an MRI ( I do not know the results of that,) and is now recieving radiation for 6 weeks .I do not know if node biopsy has been done.  I am thinking maybe they are waiting on the MRI results? I am confused as to why they can't find any other signs.  That is why I think I am not hearing about the whole picture, and quite possibly the information I am getting is only bits and pieces of what they want me to hear.  Thus the confusion.

                         

                        merbrankat
                        Participant

                          Thank you for your help.

                          I am sorry if i didnt make myself clear the first time.  During a routine removal of what the doctor thought was a cyst like growth on his head it was biopsied.  The doctor who recieved the report  said it was metastatic melanoma.  My father  was then referred to the Moffitt Center.  The growth was sent out again to a different lab.   When the second lab report was sent back the new doctor also said it was metastatic melanoma.  To my understanding isn't metastatic cancer considered stage 4?  He has had blood work, PET scan, just had an MRI ( I do not know the results of that,) and is now recieving radiation for 6 weeks .I do not know if node biopsy has been done.  I am thinking maybe they are waiting on the MRI results? I am confused as to why they can't find any other signs.  That is why I think I am not hearing about the whole picture, and quite possibly the information I am getting is only bits and pieces of what they want me to hear.  Thus the confusion.

                           

                          merbrankat
                          Participant

                            Thank you for your help.

                            I am sorry if i didnt make myself clear the first time.  During a routine removal of what the doctor thought was a cyst like growth on his head it was biopsied.  The doctor who recieved the report  said it was metastatic melanoma.  My father  was then referred to the Moffitt Center.  The growth was sent out again to a different lab.   When the second lab report was sent back the new doctor also said it was metastatic melanoma.  To my understanding isn't metastatic cancer considered stage 4?  He has had blood work, PET scan, just had an MRI ( I do not know the results of that,) and is now recieving radiation for 6 weeks .I do not know if node biopsy has been done.  I am thinking maybe they are waiting on the MRI results? I am confused as to why they can't find any other signs.  That is why I think I am not hearing about the whole picture, and quite possibly the information I am getting is only bits and pieces of what they want me to hear.  Thus the confusion.

                             

                            affguy
                            Participant

                              A biopsy can differentiate between a primary and secondary tumor.  Initial diagnosis based on a metastatic tumor with no known primary is an uncommon but not unheard of occurrence, and there are several people on this site who got here by that route.  I'm not sure what they are irradiating if a single cutaneous tumor is all they've identified, unless it's some sort of preventative measure.  Perhaps excision plus irradiation is a normal approach when the initial diagnosis confirms active metastasis.

                              affguy
                              Participant

                                A biopsy can differentiate between a primary and secondary tumor.  Initial diagnosis based on a metastatic tumor with no known primary is an uncommon but not unheard of occurrence, and there are several people on this site who got here by that route.  I'm not sure what they are irradiating if a single cutaneous tumor is all they've identified, unless it's some sort of preventative measure.  Perhaps excision plus irradiation is a normal approach when the initial diagnosis confirms active metastasis.

                                affguy
                                Participant

                                  A biopsy can differentiate between a primary and secondary tumor.  Initial diagnosis based on a metastatic tumor with no known primary is an uncommon but not unheard of occurrence, and there are several people on this site who got here by that route.  I'm not sure what they are irradiating if a single cutaneous tumor is all they've identified, unless it's some sort of preventative measure.  Perhaps excision plus irradiation is a normal approach when the initial diagnosis confirms active metastasis.

                                  Janner
                                  Participant

                                    People with an "unknown primary" are typically considered stage III upon initial diagnosis.  It is thought that the original primary may have "regressed", or the body might have fought that cancer and destroyed it, but not before some extra cells traveled away from the original site.  In general, the thought is that the metastases are probably "regional" or in the same lymph basin which means stage III.  But that is typically when the melanoma is first found in the lymph nodes.  Since your father's melanoma was on his head, stage III or IV are both possibilities.  Since you don't know where it started, you can only make an educated guess on stage III/IV staging.

                                    So if the brain MRI is clear and the PET scan shows nothing else, the head would be the only location known.  Radiation isn't normally used to fight melanoma, but it is sometimes used to clean up an area.  It is used for local control of an area.

                                    Moffit is a good place to be if you have melanoma – they have melanoma specialists and clinical trials.  While not common, your father isn't unique in not finding other evidence of disease.  Just keep asking questions.  If the brain MRI is clear, are they planning on doing some type of clinical trial?  Adjuvant therapy? 

                                    Janner
                                    Participant

                                      People with an "unknown primary" are typically considered stage III upon initial diagnosis.  It is thought that the original primary may have "regressed", or the body might have fought that cancer and destroyed it, but not before some extra cells traveled away from the original site.  In general, the thought is that the metastases are probably "regional" or in the same lymph basin which means stage III.  But that is typically when the melanoma is first found in the lymph nodes.  Since your father's melanoma was on his head, stage III or IV are both possibilities.  Since you don't know where it started, you can only make an educated guess on stage III/IV staging.

                                      So if the brain MRI is clear and the PET scan shows nothing else, the head would be the only location known.  Radiation isn't normally used to fight melanoma, but it is sometimes used to clean up an area.  It is used for local control of an area.

                                      Moffit is a good place to be if you have melanoma – they have melanoma specialists and clinical trials.  While not common, your father isn't unique in not finding other evidence of disease.  Just keep asking questions.  If the brain MRI is clear, are they planning on doing some type of clinical trial?  Adjuvant therapy? 

                                      Janner
                                      Participant

                                        People with an "unknown primary" are typically considered stage III upon initial diagnosis.  It is thought that the original primary may have "regressed", or the body might have fought that cancer and destroyed it, but not before some extra cells traveled away from the original site.  In general, the thought is that the metastases are probably "regional" or in the same lymph basin which means stage III.  But that is typically when the melanoma is first found in the lymph nodes.  Since your father's melanoma was on his head, stage III or IV are both possibilities.  Since you don't know where it started, you can only make an educated guess on stage III/IV staging.

                                        So if the brain MRI is clear and the PET scan shows nothing else, the head would be the only location known.  Radiation isn't normally used to fight melanoma, but it is sometimes used to clean up an area.  It is used for local control of an area.

                                        Moffit is a good place to be if you have melanoma – they have melanoma specialists and clinical trials.  While not common, your father isn't unique in not finding other evidence of disease.  Just keep asking questions.  If the brain MRI is clear, are they planning on doing some type of clinical trial?  Adjuvant therapy? 

                                        Janner
                                        Participant

                                          So to hopefully make this maybe a bit more clear:

                                          A biopsy of the skin can say two things:  This is the melanoma primary or this is a metastatic lesion. 

                                          Since you indicate this is the melanoma primary – the biopsy does NOT say stage IV.  A skin biopsy can only report about the skin being looked at and can't report anything else.  So it looks at what is being removed and describes that lesion – not what is happening anywhere else in the body.  Like I stated above, stage IV is organ involvement or distant mets and a skin pathology report that is describing a primary site cannot report on either of the 2 stage IV criteria.  So it can't say stage IV when describing a primary.   Given the fact they are still trying to manage this surgically – maybe to get better margins – that again that implies that this is a stage I or stage II lesion, not stage IV.  Nothing you describe fits the stage IV scenario so far unless there is missing information.  The missing piece is whether or not his lymph nodes have been tested – that is where you get the stage III diagnosis.

                                          Janner
                                          Participant

                                            So to hopefully make this maybe a bit more clear:

                                            A biopsy of the skin can say two things:  This is the melanoma primary or this is a metastatic lesion. 

                                            Since you indicate this is the melanoma primary – the biopsy does NOT say stage IV.  A skin biopsy can only report about the skin being looked at and can't report anything else.  So it looks at what is being removed and describes that lesion – not what is happening anywhere else in the body.  Like I stated above, stage IV is organ involvement or distant mets and a skin pathology report that is describing a primary site cannot report on either of the 2 stage IV criteria.  So it can't say stage IV when describing a primary.   Given the fact they are still trying to manage this surgically – maybe to get better margins – that again that implies that this is a stage I or stage II lesion, not stage IV.  Nothing you describe fits the stage IV scenario so far unless there is missing information.  The missing piece is whether or not his lymph nodes have been tested – that is where you get the stage III diagnosis.

                                            Janner
                                            Participant

                                              You don't typically biopsy stage IV.  Staging is systemic analysis of the disease and usually indicated by the doctor.  Pathologists read tissue and therefore don't typically stage because they do not know the status of disease elsewhere.  That's why pathologists say Clark's Level IV (deep layer of skin) but not stage IV.  Stage IV is either organ involvement OR distant metastasis.  You biopsy Clark's Level IV.   If this is his primary site, it isn't distant mets and it isn't organ involvement.  That implies stage I or more likely stage II.  Radiation might be done because the lesion is deep and the margins not clear.  Has he ever had a sentinel lymph node biopsy?  Basically, have the lymph nodes been surgically tested?  PET scans don't show microscopic disease.  And finally, is he seeing a melanoma specialist?  Because that is the most important thing.  If you are not getting the answers you need, a second opinion is in order. 

                                              Janner
                                              Participant

                                                You don't typically biopsy stage IV.  Staging is systemic analysis of the disease and usually indicated by the doctor.  Pathologists read tissue and therefore don't typically stage because they do not know the status of disease elsewhere.  That's why pathologists say Clark's Level IV (deep layer of skin) but not stage IV.  Stage IV is either organ involvement OR distant metastasis.  You biopsy Clark's Level IV.   If this is his primary site, it isn't distant mets and it isn't organ involvement.  That implies stage I or more likely stage II.  Radiation might be done because the lesion is deep and the margins not clear.  Has he ever had a sentinel lymph node biopsy?  Basically, have the lymph nodes been surgically tested?  PET scans don't show microscopic disease.  And finally, is he seeing a melanoma specialist?  Because that is the most important thing.  If you are not getting the answers you need, a second opinion is in order. 

                                                merbrankat
                                                Participant

                                                  The lesion was on the top of his head.  He has had melanoma surgery many times in that area along with plastic surgery.  They are considering it the primary site.  Unknown about the clark level.  I have a feeling I am not being told everything truthfully.  Every thing i have read about Metastatic melanoma is just the opposite of what they are being told.  Stage 4 was biopsied 2xs from 2 differed labs.  Same conclusion.

                                                  merbrankat
                                                  Participant

                                                    The lesion was on the top of his head.  He has had melanoma surgery many times in that area along with plastic surgery.  They are considering it the primary site.  Unknown about the clark level.  I have a feeling I am not being told everything truthfully.  Every thing i have read about Metastatic melanoma is just the opposite of what they are being told.  Stage 4 was biopsied 2xs from 2 differed labs.  Same conclusion.

                                                  Tamils
                                                  Participant

                                                    Hi,

                                                    My father was initially diagnosed with metastatic melanoma, stage IV, after having a growth removed from his head.  In his case, the tumor was under the skin (so not a primary) and was eating away at the skull bone, but not having reached the brain.  After the tumor was removed, he had radiation to the area in order to lessen the chance of a recurrence in that specific area.  His PET/CT scans were all clear for the rest of his body.  

                                                    My guess is that your father's situation is similar up to that point.  You should get to a melanoma specialist and start some type of systemic (affecting the whole body) treatment.  Your father likely has microscopic bits of melanoma throughout his body, which will take hold as a detectable tumor at some point.  

                                                    In my father's case, his surgery was in November (2012), scans were clear in December, he felt fine, his oncologist didn't suggest any further course of action, and we were ignorant of the need to see a specialist and do systemic treatment.   By March his scans showed metastasis to his liver and spine, pelvis, and other bones.  Then we went to a specialist, got ipi, started a PD1 trial, but I wish we had done it all so much earlier.  Thus my advice to you now.  Good luck!  Your father has a lot more FDA-approved and better options than my dad did just a few years ago.     

                                                    Tamils
                                                    Participant

                                                      Hi,

                                                      My father was initially diagnosed with metastatic melanoma, stage IV, after having a growth removed from his head.  In his case, the tumor was under the skin (so not a primary) and was eating away at the skull bone, but not having reached the brain.  After the tumor was removed, he had radiation to the area in order to lessen the chance of a recurrence in that specific area.  His PET/CT scans were all clear for the rest of his body.  

                                                      My guess is that your father's situation is similar up to that point.  You should get to a melanoma specialist and start some type of systemic (affecting the whole body) treatment.  Your father likely has microscopic bits of melanoma throughout his body, which will take hold as a detectable tumor at some point.  

                                                      In my father's case, his surgery was in November (2012), scans were clear in December, he felt fine, his oncologist didn't suggest any further course of action, and we were ignorant of the need to see a specialist and do systemic treatment.   By March his scans showed metastasis to his liver and spine, pelvis, and other bones.  Then we went to a specialist, got ipi, started a PD1 trial, but I wish we had done it all so much earlier.  Thus my advice to you now.  Good luck!  Your father has a lot more FDA-approved and better options than my dad did just a few years ago.     

                                                        merbrankat
                                                        Participant

                                                          Thank you so much for your response.  I truly appreciate it.  I am hopeful that it will not progress too fast.

                                                          merbrankat
                                                          Participant

                                                            Thank you so much for your response.  I truly appreciate it.  I am hopeful that it will not progress too fast.

                                                            merbrankat
                                                            Participant

                                                              Thank you so much for your response.  I truly appreciate it.  I am hopeful that it will not progress too fast.

                                                            Tamils
                                                            Participant

                                                              Hi,

                                                              My father was initially diagnosed with metastatic melanoma, stage IV, after having a growth removed from his head.  In his case, the tumor was under the skin (so not a primary) and was eating away at the skull bone, but not having reached the brain.  After the tumor was removed, he had radiation to the area in order to lessen the chance of a recurrence in that specific area.  His PET/CT scans were all clear for the rest of his body.  

                                                              My guess is that your father's situation is similar up to that point.  You should get to a melanoma specialist and start some type of systemic (affecting the whole body) treatment.  Your father likely has microscopic bits of melanoma throughout his body, which will take hold as a detectable tumor at some point.  

                                                              In my father's case, his surgery was in November (2012), scans were clear in December, he felt fine, his oncologist didn't suggest any further course of action, and we were ignorant of the need to see a specialist and do systemic treatment.   By March his scans showed metastasis to his liver and spine, pelvis, and other bones.  Then we went to a specialist, got ipi, started a PD1 trial, but I wish we had done it all so much earlier.  Thus my advice to you now.  Good luck!  Your father has a lot more FDA-approved and better options than my dad did just a few years ago.     

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