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.

Stage Question for Newly Diagnosed Metastatic Non-Cutaneous Melanoma

Forums Ocular Melanoma Community Stage Question for Newly Diagnosed Metastatic Non-Cutaneous Melanoma

  • Post
    Girl52
    Participant

    Hi…just found this wonderful site. My brother-in-law recently had a lesion removed from his arm, and when path report came back, derm said it was metastatic melanoma that didn't orginate in the skin. He indicated that the situation is very serious.

    My BIL had eye exam today, negative for ocular melanoma. Blood test two days ago, with no results back yet for possible liver compromise. PET scan scheduled for Monday.

    Question: If you're told you have a non-skin melanoma that also isn't ocular, do you have mucosal melanoma? And is it automatically stage four if it orginated inside the body, then spread to the skin?

    BIL's general practioner, unbelievably, said he "didn't expect the tests to show anything." Huh? Is it possible to have metastatic melanoma and not have a PET detect it?

    Wow, is this frightening. Thanks for any insight, and glad to have found you.

     

    Loading spinner
Viewing 5 reply threads
  • Replies
      hbecker
      Participant

      Hi, so sorry you've had to join us here, but welcome.

      I wonder if your BIL has a "melanoma of unknown primary" – and that leads me to suggest that he needs to get an appointment with a melanoma specialist. Not all oncologists know the latest thoughts on melanoma. I suggest he seek out a melanoma specialist who concentrates on or researches melanomas of unknown primary. He will get the best information that way.

      You could start by locating melanoma centers of excellence, and then look through the bios of the physicians at the centers he would consider going to. Some of the top centers are at MD Anderson in Houston, Moffitt in Tampa, Johns Hopkins in Baltimore or DC, University of Pennsylvania, Memorial Sloan Kettering in New York, The Angeles in LA, UCSF in San Francisco. You'll find a list (by state) here: http://melanomainternational.org/web-resources/cancer-centers/#.VBzHwVfYF0Q.

      When you have the path report, post the details here and we'll try to help. A number of us will also be very interested to follow his case.

      Best wishes –

      Hazel

       

      Loading spinner
      hbecker
      Participant

      Hi, so sorry you've had to join us here, but welcome.

      I wonder if your BIL has a "melanoma of unknown primary" – and that leads me to suggest that he needs to get an appointment with a melanoma specialist. Not all oncologists know the latest thoughts on melanoma. I suggest he seek out a melanoma specialist who concentrates on or researches melanomas of unknown primary. He will get the best information that way.

      You could start by locating melanoma centers of excellence, and then look through the bios of the physicians at the centers he would consider going to. Some of the top centers are at MD Anderson in Houston, Moffitt in Tampa, Johns Hopkins in Baltimore or DC, University of Pennsylvania, Memorial Sloan Kettering in New York, The Angeles in LA, UCSF in San Francisco. You'll find a list (by state) here: http://melanomainternational.org/web-resources/cancer-centers/#.VBzHwVfYF0Q.

      When you have the path report, post the details here and we'll try to help. A number of us will also be very interested to follow his case.

      Best wishes –

      Hazel

       

      Loading spinner
      hbecker
      Participant

      Hi, so sorry you've had to join us here, but welcome.

      I wonder if your BIL has a "melanoma of unknown primary" – and that leads me to suggest that he needs to get an appointment with a melanoma specialist. Not all oncologists know the latest thoughts on melanoma. I suggest he seek out a melanoma specialist who concentrates on or researches melanomas of unknown primary. He will get the best information that way.

      You could start by locating melanoma centers of excellence, and then look through the bios of the physicians at the centers he would consider going to. Some of the top centers are at MD Anderson in Houston, Moffitt in Tampa, Johns Hopkins in Baltimore or DC, University of Pennsylvania, Memorial Sloan Kettering in New York, The Angeles in LA, UCSF in San Francisco. You'll find a list (by state) here: http://melanomainternational.org/web-resources/cancer-centers/#.VBzHwVfYF0Q.

      When you have the path report, post the details here and we'll try to help. A number of us will also be very interested to follow his case.

      Best wishes –

      Hazel

       

      Loading spinner
      Janner
      Participant

      I'd also possibly request a second opinion on the pathology from another institution that deals with lots of melanoma.  If something is "different", I'd definitely want another opinion to see if they agree.  Just my thoughts.  Definitely make sure the doc is a melanoma specialist – it makes a difference!

      Loading spinner
      Janner
      Participant

      I'd also possibly request a second opinion on the pathology from another institution that deals with lots of melanoma.  If something is "different", I'd definitely want another opinion to see if they agree.  Just my thoughts.  Definitely make sure the doc is a melanoma specialist – it makes a difference!

      Loading spinner
        Girl52
        Participant

        Teo and Hazel: Thank you for your generous replies. Teo, what a joy to know you are NED at five years. Will pray this continues. Hazel, appreciate your suggestions and will pass along that getting a second opinion on the pathology, and finding melanoma specialist derm and oncologist, are way to go. We live not too far from D.C. and Baltimore, so maybe we can go to Hopkins. 

        Before this, I had never heard of melanoma that didn't start in the skin, and always believed that a cancer that had metastisized would have a number of clear symptoms.

        I've read that PET scans are considered very helpful with melanoma, including staging. I still can't imagine why my BIL's internist said he didn't understand what derm's diagnosis was based on. The dermatologist has been listed in a magazine of "Top Doctors," so is someone of good reputation.

        My own first husband died of a brain tumor nine years ago. While I am blessed to be happily remarried, the fear and uncertainty I had for many years about his condition has come crashing back with my BIL's diagnosis. My sister and BIL were rocks for me during that terrible time.

        Thanks so much for the insight and great support, and I'll post again when we know more. So glad I found you.      

        Loading spinner
        Girl52
        Participant

        Teo and Hazel: Thank you for your generous replies. Teo, what a joy to know you are NED at five years. Will pray this continues. Hazel, appreciate your suggestions and will pass along that getting a second opinion on the pathology, and finding melanoma specialist derm and oncologist, are way to go. We live not too far from D.C. and Baltimore, so maybe we can go to Hopkins. 

        Before this, I had never heard of melanoma that didn't start in the skin, and always believed that a cancer that had metastisized would have a number of clear symptoms.

        I've read that PET scans are considered very helpful with melanoma, including staging. I still can't imagine why my BIL's internist said he didn't understand what derm's diagnosis was based on. The dermatologist has been listed in a magazine of "Top Doctors," so is someone of good reputation.

        My own first husband died of a brain tumor nine years ago. While I am blessed to be happily remarried, the fear and uncertainty I had for many years about his condition has come crashing back with my BIL's diagnosis. My sister and BIL were rocks for me during that terrible time.

        Thanks so much for the insight and great support, and I'll post again when we know more. So glad I found you.      

        Loading spinner
        Girl52
        Participant

        Forgot one thing: How does one go about getting a second pathology opinion? Is the tissue sample from first procedure saved, or is another second excision done, etc.? Thanks.

        Loading spinner
        Girl52
        Participant

        Forgot one thing: How does one go about getting a second pathology opinion? Is the tissue sample from first procedure saved, or is another second excision done, etc.? Thanks.

        Loading spinner
        Janner
        Participant

        The prepared slides from the first biopsy are sent to another facility.  These slides are saved for many years before they can be destroyed.

        The problem with PET scans is they do not pick up microscopic disease.  Tumors must be around a half centimeter or so before they can be picked up on a PET scan.  PET scans also have false positives because they just show metabolic uptake – not just cancer.  Other things like something as simple as arthritis can show up on a PET.

        Loading spinner
        Janner
        Participant

        The prepared slides from the first biopsy are sent to another facility.  These slides are saved for many years before they can be destroyed.

        The problem with PET scans is they do not pick up microscopic disease.  Tumors must be around a half centimeter or so before they can be picked up on a PET scan.  PET scans also have false positives because they just show metabolic uptake – not just cancer.  Other things like something as simple as arthritis can show up on a PET.

        Loading spinner
        Girl52
        Participant

        Janner: Thanks…that's a relief to know slides are saved. Another question for you: If path says metastatic disease is present but PET doesn't pick it up, what do they do next? Other tests (which ones?) or administer a systemic treatment to slow or halt growth? Derm said from physical exam that BIL's lymph nodes didn't seem enlarged or abnormal, and I think he was surprised. At what point do they do a sentinel biopsy? What is the sentinel if you don't know where primary tumor is? Skin lesion was near BIL's elbow and 12x10x3.  

        Loading spinner
        Girl52
        Participant

        Janner: Thanks…that's a relief to know slides are saved. Another question for you: If path says metastatic disease is present but PET doesn't pick it up, what do they do next? Other tests (which ones?) or administer a systemic treatment to slow or halt growth? Derm said from physical exam that BIL's lymph nodes didn't seem enlarged or abnormal, and I think he was surprised. At what point do they do a sentinel biopsy? What is the sentinel if you don't know where primary tumor is? Skin lesion was near BIL's elbow and 12x10x3.  

        Loading spinner
        Janner
        Participant

        Honestly, I'd want a second opinion on the lesion first making sure this isn't the primary site.  The SNB could be done at the time they removed the skin lesion – basically treating the skin lesion as the primary site.  But if it is truly metastatic, that might have limited value.  For me, deciding if this were stage III/IV (metastatic)  or an earlier stage (local) seems to me to be the most important (and controversial) aspect right now — and that is where the second or third opinion on the slides come in.  You can tell the doc your want additional path opinion or contact another institution yourself and get the slides from the current pathology department.  I would be doing this FIRST before I made any additional treatment decisions.  It's just an unusual case and I think you want several opinions weighing in before deciding what treatment is truly appropriate.

        Loading spinner
        Janner
        Participant

        Honestly, I'd want a second opinion on the lesion first making sure this isn't the primary site.  The SNB could be done at the time they removed the skin lesion – basically treating the skin lesion as the primary site.  But if it is truly metastatic, that might have limited value.  For me, deciding if this were stage III/IV (metastatic)  or an earlier stage (local) seems to me to be the most important (and controversial) aspect right now — and that is where the second or third opinion on the slides come in.  You can tell the doc your want additional path opinion or contact another institution yourself and get the slides from the current pathology department.  I would be doing this FIRST before I made any additional treatment decisions.  It's just an unusual case and I think you want several opinions weighing in before deciding what treatment is truly appropriate.

        Loading spinner
        Janner
        Participant

        Honestly, I'd want a second opinion on the lesion first making sure this isn't the primary site.  The SNB could be done at the time they removed the skin lesion – basically treating the skin lesion as the primary site.  But if it is truly metastatic, that might have limited value.  For me, deciding if this were stage III/IV (metastatic)  or an earlier stage (local) seems to me to be the most important (and controversial) aspect right now — and that is where the second or third opinion on the slides come in.  You can tell the doc your want additional path opinion or contact another institution yourself and get the slides from the current pathology department.  I would be doing this FIRST before I made any additional treatment decisions.  It's just an unusual case and I think you want several opinions weighing in before deciding what treatment is truly appropriate.

        Loading spinner
        Girl52
        Participant

        Janner: Thanks again for quick response. I won't know any more until early next week, but have a couple more questions: At what point in the process is a SNB usually done? Do they sometimes recommend a PET before SNB, depending on pathology report…or in a situation like BIL's, where excised site is thought to be metastatic and not primary? Also wondering if cancerous lymph nodes are always swollen or if something feels funny on palpation? Does non-skin melanoma sometimes travel through blood rather than lymph nodes?   

        Loading spinner
        Girl52
        Participant

        Janner: Thanks again for quick response. I won't know any more until early next week, but have a couple more questions: At what point in the process is a SNB usually done? Do they sometimes recommend a PET before SNB, depending on pathology report…or in a situation like BIL's, where excised site is thought to be metastatic and not primary? Also wondering if cancerous lymph nodes are always swollen or if something feels funny on palpation? Does non-skin melanoma sometimes travel through blood rather than lymph nodes?   

        Loading spinner
        Girl52
        Participant

        Janner: Thanks again for quick response. I won't know any more until early next week, but have a couple more questions: At what point in the process is a SNB usually done? Do they sometimes recommend a PET before SNB, depending on pathology report…or in a situation like BIL's, where excised site is thought to be metastatic and not primary? Also wondering if cancerous lymph nodes are always swollen or if something feels funny on palpation? Does non-skin melanoma sometimes travel through blood rather than lymph nodes?   

        Loading spinner
        Janner
        Participant

        This is why you need the second opinion first, to see if the other opinion thinks this is metastatic as opposed to primary.  It changes everything.

        The SNB is done after the initial biopsy and when they go in to take larger margins.  They rarely recommend a PET scan before a SNB, because the SNB is a staging tool done when a lesion is thought to be primary.  PET scans would never catch microscopic disease in a lymph node but the SNB would. Cancerous nodes can have as few as a couple of cells and palpating and PET scans would never catch that.  The SNB is much more appropriate than scans for staging evaluation.  All types of melanoma can travel through the blood supply as opposed to the lymph nodes.  However, if the lesion is on/under the skin, the lymph vessel travel would be more likely.  If the melanoma traveled thru the blood vessels, then organs would be a more likely target.  On some occasions, PETS might be done before the SNB — but that would be more likely when there are symptoms of other metastasis.  However, I'm sure it could be argued in this case.  Again, PET might not be the right choice here because it is not cancer specific.  A CT might actually be a better choice, it has a higher resolution. 

        I have a friend who had what was thought to be a metastatic lesion, not primary, on her hip.  No one could decide for sure if it really was primary or metastatic.  It was a fairly deep lesion.  There never was a final concensus on primary versus metastatic.  She did the wide excision and SNB where they found microscopic cells in the sentinel node.  She had a complete lymph node dissection and no other treatment.  She no longer posts here, but she is about 7 years out from her initial diagnosis with no recurrence.  There are always going to be some fringe cases which really don't fit the typical norms of any type of melanoma.  I guess that's why I feel its so important to have the slides read again by a major melanoma institution.  You really just need to know if another expert agrees before you take further steps. 

        Loading spinner
        Janner
        Participant

        This is why you need the second opinion first, to see if the other opinion thinks this is metastatic as opposed to primary.  It changes everything.

        The SNB is done after the initial biopsy and when they go in to take larger margins.  They rarely recommend a PET scan before a SNB, because the SNB is a staging tool done when a lesion is thought to be primary.  PET scans would never catch microscopic disease in a lymph node but the SNB would. Cancerous nodes can have as few as a couple of cells and palpating and PET scans would never catch that.  The SNB is much more appropriate than scans for staging evaluation.  All types of melanoma can travel through the blood supply as opposed to the lymph nodes.  However, if the lesion is on/under the skin, the lymph vessel travel would be more likely.  If the melanoma traveled thru the blood vessels, then organs would be a more likely target.  On some occasions, PETS might be done before the SNB — but that would be more likely when there are symptoms of other metastasis.  However, I'm sure it could be argued in this case.  Again, PET might not be the right choice here because it is not cancer specific.  A CT might actually be a better choice, it has a higher resolution. 

        I have a friend who had what was thought to be a metastatic lesion, not primary, on her hip.  No one could decide for sure if it really was primary or metastatic.  It was a fairly deep lesion.  There never was a final concensus on primary versus metastatic.  She did the wide excision and SNB where they found microscopic cells in the sentinel node.  She had a complete lymph node dissection and no other treatment.  She no longer posts here, but she is about 7 years out from her initial diagnosis with no recurrence.  There are always going to be some fringe cases which really don't fit the typical norms of any type of melanoma.  I guess that's why I feel its so important to have the slides read again by a major melanoma institution.  You really just need to know if another expert agrees before you take further steps. 

        Loading spinner
        Janner
        Participant

        This is why you need the second opinion first, to see if the other opinion thinks this is metastatic as opposed to primary.  It changes everything.

        The SNB is done after the initial biopsy and when they go in to take larger margins.  They rarely recommend a PET scan before a SNB, because the SNB is a staging tool done when a lesion is thought to be primary.  PET scans would never catch microscopic disease in a lymph node but the SNB would. Cancerous nodes can have as few as a couple of cells and palpating and PET scans would never catch that.  The SNB is much more appropriate than scans for staging evaluation.  All types of melanoma can travel through the blood supply as opposed to the lymph nodes.  However, if the lesion is on/under the skin, the lymph vessel travel would be more likely.  If the melanoma traveled thru the blood vessels, then organs would be a more likely target.  On some occasions, PETS might be done before the SNB — but that would be more likely when there are symptoms of other metastasis.  However, I'm sure it could be argued in this case.  Again, PET might not be the right choice here because it is not cancer specific.  A CT might actually be a better choice, it has a higher resolution. 

        I have a friend who had what was thought to be a metastatic lesion, not primary, on her hip.  No one could decide for sure if it really was primary or metastatic.  It was a fairly deep lesion.  There never was a final concensus on primary versus metastatic.  She did the wide excision and SNB where they found microscopic cells in the sentinel node.  She had a complete lymph node dissection and no other treatment.  She no longer posts here, but she is about 7 years out from her initial diagnosis with no recurrence.  There are always going to be some fringe cases which really don't fit the typical norms of any type of melanoma.  I guess that's why I feel its so important to have the slides read again by a major melanoma institution.  You really just need to know if another expert agrees before you take further steps. 

        Loading spinner
        Girl52
        Participant

        Janner: Thanks…that's a relief to know slides are saved. Another question for you: If path says metastatic disease is present but PET doesn't pick it up, what do they do next? Other tests (which ones?) or administer a systemic treatment to slow or halt growth? Derm said from physical exam that BIL's lymph nodes didn't seem enlarged or abnormal, and I think he was surprised. At what point do they do a sentinel biopsy? What is the sentinel if you don't know where primary tumor is? Skin lesion was near BIL's elbow and 12x10x3.  

        Loading spinner
        Janner
        Participant

        The prepared slides from the first biopsy are sent to another facility.  These slides are saved for many years before they can be destroyed.

        The problem with PET scans is they do not pick up microscopic disease.  Tumors must be around a half centimeter or so before they can be picked up on a PET scan.  PET scans also have false positives because they just show metabolic uptake – not just cancer.  Other things like something as simple as arthritis can show up on a PET.

        Loading spinner
        Girl52
        Participant

        Forgot one thing: How does one go about getting a second pathology opinion? Is the tissue sample from first procedure saved, or is another second excision done, etc.? Thanks.

        Loading spinner
        hbecker
        Participant

        If your brother-in-law can get an appointment with William Sharfman at Hopkins, that would be good. One of his specialties is melanoma of unknown primary. My husband's first diagnosis was metastatic (Stage IV) but Dr. Sharfman didn't think that's what we were dealing with, and after much consideration Robert was staged 2B – as Janner said, the understanding that we were (are) dealing with an earlier stage helped us clear our heads. Dr. Sharfman arranged for a third opinion on the pathology. I think any melanoma specialist would get a the slides reviewed by a dermatopathologist who sees a lot of melanoma. So, again, I think getting to a melanoma specialist is key and Dr. Sharfman would be a good one to see.

        You can read about our melanoma journey on my blog, particularly about our search for more information in the face of uncertainty. Feel free to contact me through my blog if you want to talk or exchange emails.

        Hazel

         

        Loading spinner
        hbecker
        Participant

        If your brother-in-law can get an appointment with William Sharfman at Hopkins, that would be good. One of his specialties is melanoma of unknown primary. My husband's first diagnosis was metastatic (Stage IV) but Dr. Sharfman didn't think that's what we were dealing with, and after much consideration Robert was staged 2B – as Janner said, the understanding that we were (are) dealing with an earlier stage helped us clear our heads. Dr. Sharfman arranged for a third opinion on the pathology. I think any melanoma specialist would get a the slides reviewed by a dermatopathologist who sees a lot of melanoma. So, again, I think getting to a melanoma specialist is key and Dr. Sharfman would be a good one to see.

        You can read about our melanoma journey on my blog, particularly about our search for more information in the face of uncertainty. Feel free to contact me through my blog if you want to talk or exchange emails.

        Hazel

         

        Loading spinner
        hbecker
        Participant

        If your brother-in-law can get an appointment with William Sharfman at Hopkins, that would be good. One of his specialties is melanoma of unknown primary. My husband's first diagnosis was metastatic (Stage IV) but Dr. Sharfman didn't think that's what we were dealing with, and after much consideration Robert was staged 2B – as Janner said, the understanding that we were (are) dealing with an earlier stage helped us clear our heads. Dr. Sharfman arranged for a third opinion on the pathology. I think any melanoma specialist would get a the slides reviewed by a dermatopathologist who sees a lot of melanoma. So, again, I think getting to a melanoma specialist is key and Dr. Sharfman would be a good one to see.

        You can read about our melanoma journey on my blog, particularly about our search for more information in the face of uncertainty. Feel free to contact me through my blog if you want to talk or exchange emails.

        Hazel

         

        Loading spinner
        Girl52
        Participant

        Hazel and Janner: Thanks for your replies…they are so helpful, and comforting. BIL's pet scan is tomorrow; and as far as I know, no SNB or wider excision scheduled. Might these be done after PEN scan?

        I still can't figure out why GP (who arranged the PET scan) said he didn't know what derm's diagnosis was based on…with reading online re: melanoma path reports, it's hard to believe derm would have sounded so serious with BIL unless he was pretty sure about the diagnosis. Is this a correct assumption? I know from my experience with my late husband's brain tumor treatment that lots of human and other errors are made in medicine, as in other fields…I just can't imagine what could be going on here. Am actually praying the lab or dermatologist is wrong!

        Thanks again for insight, info, and support. Hazel, I went to Hopkins site and read about Dr. S…they give a number to call to get an appointment if you've been diagnosed with melanoma. I'm not sure what insurance my sis and BIL have, but if Hopkins works with it, I'll suggest they set up appointment there.

        On the personal side, it's hard to be a relative watching this happening to someone you love and not knowing whether or how to help, or whether you are butting in. Whew. It's also hard not to worry, and to stay in the moment until you know what's really happening. I know everyone here has been through that.    

        Loading spinner
        Girl52
        Participant

        Janner, Hazel, Teo: BIL's PET scan of chest, abdomen, and pelvis completely clear today (they didn't do whole-body scan). Could path report be wrong, or is there likey a cancer lurking somewhere else in the body (lymph nodes)? This is confusing. My sister will talk with dermatologist tomorrow, get copy of path report, and ask him if he still recommends they see an oncologist. No wider excision or SNB planned yet, as far as I know. What is the usual exploration procedure with this kind of path report, and clear PET?  

        Loading spinner
        Girl52
        Participant

        Janner, Hazel, Teo: BIL's PET scan of chest, abdomen, and pelvis completely clear today (they didn't do whole-body scan). Could path report be wrong, or is there likey a cancer lurking somewhere else in the body (lymph nodes)? This is confusing. My sister will talk with dermatologist tomorrow, get copy of path report, and ask him if he still recommends they see an oncologist. No wider excision or SNB planned yet, as far as I know. What is the usual exploration procedure with this kind of path report, and clear PET?  

        Loading spinner
        Janner
        Participant

        Without the path report, it is so hard to even speculate.  I'd definitely want to see a melanoma specialist for consensus on treatment.  With no obvious source, it still makes me wonder if it isn't primary.  You need an expert to guide you AND a second opinion.

        Loading spinner
        Janner
        Participant

        Without the path report, it is so hard to even speculate.  I'd definitely want to see a melanoma specialist for consensus on treatment.  With no obvious source, it still makes me wonder if it isn't primary.  You need an expert to guide you AND a second opinion.

        Loading spinner
        Girl52
        Participant

        Janner: Thank you. Am hoping to have copy of path report tomorrow and hopefully share some details here and get some insight from you and other knowledgeable folks. We aren't far from Johns Hopkins, and it sounds like a great place to go. Back in touch tomorrow.

        Loading spinner
        Girl52
        Participant

        Janner: Thank you. Am hoping to have copy of path report tomorrow and hopefully share some details here and get some insight from you and other knowledgeable folks. We aren't far from Johns Hopkins, and it sounds like a great place to go. Back in touch tomorrow.

        Loading spinner
        Girl52
        Participant

        Janner, Hazel, Teo: Got path report for BIL, whose derm says cells didn't originate in skin (mucosal melanoma?). Report isn't in the format I've seen online, nor does it contain staging specifics, etc. Hoping BIL will agree to get another opinion/be seen by oncolosist, as you have suggested. Is there anything here that particularly catches your attention?

        Here's exactly how report reads:

        "Diagnosis: Above left elbow — METASTATIC MELANOMA

        Note: The lesion extends to the base of the sections. This case has been reviewed by Dr. [poster omits name here], who agrees with the interpretation.

        Clinical Data and History: RULE OUT SQUAMOUS CELL CARCINOMA, KERATOACANTHOMA, RULE OUT MELANOMA, 238.2

        Gross Description: Received in formalin labeled with the patient's name and "above left elbow" is a shave biopsy of skin measuring 12x10x3mm. The specimin is trisected and entirely submitted in 1 cassette.

        *These measurements may not correspond to those in vivo.*

        Microscopic Description: Aggregations of cells with strikingly atypical nuclei, some of which are in mitosis, are present within the dermis. Neoplastics cells are present in numerous vessels in the dermis. Immunohistochemical profile: S100+, SOX10+, PanCK-, CK14-, CD31-, Desmin-, CD68-.

        *All controls are appropriate*

        198.2

         

        Report provided by Institute for Dermatopathology, 3805 West Chester Pike, Building D Suite 120, Newtown Square, PA 19073

         

         

         

         

         

        Loading spinner
        Girl52
        Participant

        Janner, Hazel, Teo: Got path report for BIL, whose derm says cells didn't originate in skin (mucosal melanoma?). Report isn't in the format I've seen online, nor does it contain staging specifics, etc. Hoping BIL will agree to get another opinion/be seen by oncolosist, as you have suggested. Is there anything here that particularly catches your attention?

        Here's exactly how report reads:

        "Diagnosis: Above left elbow — METASTATIC MELANOMA

        Note: The lesion extends to the base of the sections. This case has been reviewed by Dr. [poster omits name here], who agrees with the interpretation.

        Clinical Data and History: RULE OUT SQUAMOUS CELL CARCINOMA, KERATOACANTHOMA, RULE OUT MELANOMA, 238.2

        Gross Description: Received in formalin labeled with the patient's name and "above left elbow" is a shave biopsy of skin measuring 12x10x3mm. The specimin is trisected and entirely submitted in 1 cassette.

        *These measurements may not correspond to those in vivo.*

        Microscopic Description: Aggregations of cells with strikingly atypical nuclei, some of which are in mitosis, are present within the dermis. Neoplastics cells are present in numerous vessels in the dermis. Immunohistochemical profile: S100+, SOX10+, PanCK-, CK14-, CD31-, Desmin-, CD68-.

        *All controls are appropriate*

        198.2

         

        Report provided by Institute for Dermatopathology, 3805 West Chester Pike, Building D Suite 120, Newtown Square, PA 19073

         

         

         

         

         

        Loading spinner
        Girl52
        Participant

        Janner, Hazel, Teo: Got path report for BIL, whose derm says cells didn't originate in skin (mucosal melanoma?). Report isn't in the format I've seen online, nor does it contain staging specifics, etc. Hoping BIL will agree to get another opinion/be seen by oncolosist, as you have suggested. Is there anything here that particularly catches your attention?

        Here's exactly how report reads:

        "Diagnosis: Above left elbow — METASTATIC MELANOMA

        Note: The lesion extends to the base of the sections. This case has been reviewed by Dr. [poster omits name here], who agrees with the interpretation.

        Clinical Data and History: RULE OUT SQUAMOUS CELL CARCINOMA, KERATOACANTHOMA, RULE OUT MELANOMA, 238.2

        Gross Description: Received in formalin labeled with the patient's name and "above left elbow" is a shave biopsy of skin measuring 12x10x3mm. The specimin is trisected and entirely submitted in 1 cassette.

        *These measurements may not correspond to those in vivo.*

        Microscopic Description: Aggregations of cells with strikingly atypical nuclei, some of which are in mitosis, are present within the dermis. Neoplastics cells are present in numerous vessels in the dermis. Immunohistochemical profile: S100+, SOX10+, PanCK-, CK14-, CD31-, Desmin-, CD68-.

        *All controls are appropriate*

        198.2

         

        Report provided by Institute for Dermatopathology, 3805 West Chester Pike, Building D Suite 120, Newtown Square, PA 19073

         

         

         

         

         

        Loading spinner
        Girl52
        Participant

        Janner: Thank you. Am hoping to have copy of path report tomorrow and hopefully share some details here and get some insight from you and other knowledgeable folks. We aren't far from Johns Hopkins, and it sounds like a great place to go. Back in touch tomorrow.

        Loading spinner
        Janner
        Participant

        Without the path report, it is so hard to even speculate.  I'd definitely want to see a melanoma specialist for consensus on treatment.  With no obvious source, it still makes me wonder if it isn't primary.  You need an expert to guide you AND a second opinion.

        Loading spinner
        Girl52
        Participant

        Janner, Hazel, Teo: BIL's PET scan of chest, abdomen, and pelvis completely clear today (they didn't do whole-body scan). Could path report be wrong, or is there likey a cancer lurking somewhere else in the body (lymph nodes)? This is confusing. My sister will talk with dermatologist tomorrow, get copy of path report, and ask him if he still recommends they see an oncologist. No wider excision or SNB planned yet, as far as I know. What is the usual exploration procedure with this kind of path report, and clear PET?  

        Loading spinner
        Girl52
        Participant

        Hazel and Janner: Thanks for your replies…they are so helpful, and comforting. BIL's pet scan is tomorrow; and as far as I know, no SNB or wider excision scheduled. Might these be done after PEN scan?

        I still can't figure out why GP (who arranged the PET scan) said he didn't know what derm's diagnosis was based on…with reading online re: melanoma path reports, it's hard to believe derm would have sounded so serious with BIL unless he was pretty sure about the diagnosis. Is this a correct assumption? I know from my experience with my late husband's brain tumor treatment that lots of human and other errors are made in medicine, as in other fields…I just can't imagine what could be going on here. Am actually praying the lab or dermatologist is wrong!

        Thanks again for insight, info, and support. Hazel, I went to Hopkins site and read about Dr. S…they give a number to call to get an appointment if you've been diagnosed with melanoma. I'm not sure what insurance my sis and BIL have, but if Hopkins works with it, I'll suggest they set up appointment there.

        On the personal side, it's hard to be a relative watching this happening to someone you love and not knowing whether or how to help, or whether you are butting in. Whew. It's also hard not to worry, and to stay in the moment until you know what's really happening. I know everyone here has been through that.    

        Loading spinner
        Girl52
        Participant

        Hazel and Janner: Thanks for your replies…they are so helpful, and comforting. BIL's pet scan is tomorrow; and as far as I know, no SNB or wider excision scheduled. Might these be done after PEN scan?

        I still can't figure out why GP (who arranged the PET scan) said he didn't know what derm's diagnosis was based on…with reading online re: melanoma path reports, it's hard to believe derm would have sounded so serious with BIL unless he was pretty sure about the diagnosis. Is this a correct assumption? I know from my experience with my late husband's brain tumor treatment that lots of human and other errors are made in medicine, as in other fields…I just can't imagine what could be going on here. Am actually praying the lab or dermatologist is wrong!

        Thanks again for insight, info, and support. Hazel, I went to Hopkins site and read about Dr. S…they give a number to call to get an appointment if you've been diagnosed with melanoma. I'm not sure what insurance my sis and BIL have, but if Hopkins works with it, I'll suggest they set up appointment there.

        On the personal side, it's hard to be a relative watching this happening to someone you love and not knowing whether or how to help, or whether you are butting in. Whew. It's also hard not to worry, and to stay in the moment until you know what's really happening. I know everyone here has been through that.    

        Loading spinner
        Girl52
        Participant

        Teo and Hazel: Thank you for your generous replies. Teo, what a joy to know you are NED at five years. Will pray this continues. Hazel, appreciate your suggestions and will pass along that getting a second opinion on the pathology, and finding melanoma specialist derm and oncologist, are way to go. We live not too far from D.C. and Baltimore, so maybe we can go to Hopkins. 

        Before this, I had never heard of melanoma that didn't start in the skin, and always believed that a cancer that had metastisized would have a number of clear symptoms.

        I've read that PET scans are considered very helpful with melanoma, including staging. I still can't imagine why my BIL's internist said he didn't understand what derm's diagnosis was based on. The dermatologist has been listed in a magazine of "Top Doctors," so is someone of good reputation.

        My own first husband died of a brain tumor nine years ago. While I am blessed to be happily remarried, the fear and uncertainty I had for many years about his condition has come crashing back with my BIL's diagnosis. My sister and BIL were rocks for me during that terrible time.

        Thanks so much for the insight and great support, and I'll post again when we know more. So glad I found you.      

        Loading spinner
      Janner
      Participant

      I'd also possibly request a second opinion on the pathology from another institution that deals with lots of melanoma.  If something is "different", I'd definitely want another opinion to see if they agree.  Just my thoughts.  Definitely make sure the doc is a melanoma specialist – it makes a difference!

      Loading spinner
Viewing 5 reply threads
  • 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.