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Father is IIIC, questions about my biopsy

Forums General Melanoma Community Father is IIIC, questions about my biopsy

  • Post
    ChemistLN
    Participant

      Hi everyone!  Thank you for taking the time to read my post.  My dad (65 yrs old) is stage 3C, currently on interferon treatments.  Last week, I (I'm 28) had two "moles" removed via shave biopsy.  The physician had said it would be about a week for results.  She boasted about the dermatopathologists quick work and skill.  She called earlier this week to tell me the dermatopathologist wanted to seek a second opinion, causing a delay in about two days for my results.  It slightly worried me but with my family history and past tanning bed use, I was just hoping they were being cautious.  Last night, she called again to ask more questions about my dad – specifically asking what treatment he was on and if his melanoma arose from an existing mole or a new spot. Unfortunatly, we don't really know.  He noticed a swollen lymph node before they found the lesion.  I asked the doctor what she was trying to get at, and she said "honestly, I don't know.  These were just questions that were passed along to me."

      I'm thinking the purpose in asking about the treatment for my dad was to see if it was one of the treatments specific to genetic mutations. I sent my dad's pathology reports to them, hoping that might clear up some of their questions. (One of the good things about his treatment at the VA… online medical records!)

      I'm hoping someone can help me understand the process of the dermatopathologist.  Would a dysplastic nevi cell stain look similar to a melanoma cell stain?  Do the questions from the dermatopathologist seem familiar to anyone?  I understand that this would be largely speculative but I'm hoping just to gain a little insight on the process.

      Thank you!

      LNM

    Viewing 2 reply threads
    • Replies
        Janner
        Participant

          Honestly, I can't imagine the questions about your Dad being related to your pathology.  The BRAF mutation found in melanoma… I haven't read that it is an inherited mutation.  Maybe I missed that somewhere.  So I'd be confused by the question, too.

          Stains will stain ALL melanocytes – whether normal, atypical or melanoma.  The stains just help melanocytes (all varieties) show up on the slides better.  The pathologist can see the melanocytes and then can make a determination on normal, atypical or melanoma.  There are some melanomas or even benign lesions that are just "difficult" to read.  At least they are seeking a second opinion on your behalf.  I'm unclear from your post if they ever found a primary melanoma for your father?

            ChemistLN
            Participant

              Thank you so much for your reply.  I was surprised to hear the dermatopathologist was the one requesting more information too.  I'm in academia, so our health insurance requires us to use the university teaching hospital.  Maybe it was just a teaching moment?  

              My dad had two lesions and they aren't sure which one could have been primary.  He had one on his forehead and one on his calf.  He had 11 lymph nodes removed in his leg with 6 coming back metastatic. 

              Thanks for explaining the staining process.  I barely remember learning about this in an undergrad cell bio class.  Do you know if the number of melanocytes is what differentiates an atypical mole from melanoma?  If it turns out that it is difficult to read, will they usually request more tissue?  

              Thanks again!

              Janner
              Participant

                It's not the number of cells.  There are two general areas they look at.  Architecture, or how the melanocytes are configured – and cell structure, whether the cell itself is showing mutations.  It's a combination of both that determine atypical lesion versus melanoma, and it's not a cut and dried diagnosis.  It's more on a  sliding scale where all factors are evaluated and "added up" to be either benign, atypical or melanoma.  Things like if a lot of cells are at the epidermal/dermal junction or if there are immature cells and MANY other things kind of determine where the lesion stands. 

                My Dad was at the VA – his pathology was sent to the nearby cancer center for diagnosis.  It was part of the Cancer Center, University and VA teaching group. 

                As for taking more tissue, it totally depends on what is finally decided on the diagnosis.

                ChemistLN
                Participant

                  Thank you so much for your help! 

                  ChemistLN
                  Participant

                    The dermatologist called again today.  She started off my saying that they don't have a diagnosis even after the second opinion (local) and now they want to send it off to California for further testing.  I never know what to say when I'm on the phone with her.  I'm obviously thankful that they are taking the time to make the right diagnosis but she said it could be another 2-3 weeks.  I don't know what to ask or what to say.  

                    Has anyone heard of this?

                    Thank you!

                    LNM

                    ChemistLN
                    Participant

                      The dermatologist called again today.  She started off my saying that they don't have a diagnosis even after the second opinion (local) and now they want to send it off to California for further testing.  I never know what to say when I'm on the phone with her.  I'm obviously thankful that they are taking the time to make the right diagnosis but she said it could be another 2-3 weeks.  I don't know what to ask or what to say.  

                      Has anyone heard of this?

                      Thank you!

                      LNM

                      Janner
                      Participant

                        They may be wanting to do some type of genetic testing like the FISH test to see the DNA of the tumor.  They do this for Spitz Nevi.  (Spitz nevi are typically found in kids, but can look identical to melanoma under the microscope).  So the DNA testing can identify if there are lots of genetic defects (melanoma) versus few to none (benign Spitz nevi).  No clue if this is what is happening in your case, but just a thought.

                        Janner
                        Participant

                          They may be wanting to do some type of genetic testing like the FISH test to see the DNA of the tumor.  They do this for Spitz Nevi.  (Spitz nevi are typically found in kids, but can look identical to melanoma under the microscope).  So the DNA testing can identify if there are lots of genetic defects (melanoma) versus few to none (benign Spitz nevi).  No clue if this is what is happening in your case, but just a thought.

                          Janner
                          Participant

                            They may be wanting to do some type of genetic testing like the FISH test to see the DNA of the tumor.  They do this for Spitz Nevi.  (Spitz nevi are typically found in kids, but can look identical to melanoma under the microscope).  So the DNA testing can identify if there are lots of genetic defects (melanoma) versus few to none (benign Spitz nevi).  No clue if this is what is happening in your case, but just a thought.

                            vlmd1986
                            Participant

                              Hi LMN,

                              My stuff got sent to California (UCSF) for a second opinion before any diagnosis was given, so that's COMPLETELY normal/routine. I've also read several other stories of peoples' things getting sent to California for a second opinion (usually to UCSF). The Spitz lesions, as Janner mentioned, are incredibly difficult to classify (benign versus kinda bad (Atypical) versus really bad (Malignant Melanoma)), and the Spitz experts are at UCSF. 

                              It didn't take 2-3 weeks for me to get my results back from UCSF (it was more like 1 week), so hopefully that will be the case for you as well. My advice to you would be to stop thinking about the path results and continue to be actively grateful that you have so many doctors looking out for you and trying to arrive at the most accurate diagnosis. Trust me, there will be plenty of time after the report is finalized for you to think about/obsess over the diagnosis 😉

                              Have a great day,

                              VL

                              ChemistLN
                              Participant

                                Hi VL,  Thanks so much for your response.  She did tell me UCSF, but I had forgetten where she said by the time we got off the phone, I'm so glad you reminded me.  Their website boasts that they have a definitive diagnosis 100% of the time, which was one of my concerns.  What if they see it and they still don't know, I guess that doesn't happen.

                                I'm also hopeful to hear back in the same amount of time as you!  

                                Thank you so much for your reply!

                                ChemistLN
                                Participant

                                  Hi VL,  Thanks so much for your response.  She did tell me UCSF, but I had forgetten where she said by the time we got off the phone, I'm so glad you reminded me.  Their website boasts that they have a definitive diagnosis 100% of the time, which was one of my concerns.  What if they see it and they still don't know, I guess that doesn't happen.

                                  I'm also hopeful to hear back in the same amount of time as you!  

                                  Thank you so much for your reply!

                                  ChemistLN
                                  Participant

                                    Hi VL,  Thanks so much for your response.  She did tell me UCSF, but I had forgetten where she said by the time we got off the phone, I'm so glad you reminded me.  Their website boasts that they have a definitive diagnosis 100% of the time, which was one of my concerns.  What if they see it and they still don't know, I guess that doesn't happen.

                                    I'm also hopeful to hear back in the same amount of time as you!  

                                    Thank you so much for your reply!

                                    vlmd1986
                                    Participant

                                      Hi LMN,

                                      My stuff got sent to California (UCSF) for a second opinion before any diagnosis was given, so that's COMPLETELY normal/routine. I've also read several other stories of peoples' things getting sent to California for a second opinion (usually to UCSF). The Spitz lesions, as Janner mentioned, are incredibly difficult to classify (benign versus kinda bad (Atypical) versus really bad (Malignant Melanoma)), and the Spitz experts are at UCSF. 

                                      It didn't take 2-3 weeks for me to get my results back from UCSF (it was more like 1 week), so hopefully that will be the case for you as well. My advice to you would be to stop thinking about the path results and continue to be actively grateful that you have so many doctors looking out for you and trying to arrive at the most accurate diagnosis. Trust me, there will be plenty of time after the report is finalized for you to think about/obsess over the diagnosis 😉

                                      Have a great day,

                                      VL

                                      vlmd1986
                                      Participant

                                        Hi LMN,

                                        My stuff got sent to California (UCSF) for a second opinion before any diagnosis was given, so that's COMPLETELY normal/routine. I've also read several other stories of peoples' things getting sent to California for a second opinion (usually to UCSF). The Spitz lesions, as Janner mentioned, are incredibly difficult to classify (benign versus kinda bad (Atypical) versus really bad (Malignant Melanoma)), and the Spitz experts are at UCSF. 

                                        It didn't take 2-3 weeks for me to get my results back from UCSF (it was more like 1 week), so hopefully that will be the case for you as well. My advice to you would be to stop thinking about the path results and continue to be actively grateful that you have so many doctors looking out for you and trying to arrive at the most accurate diagnosis. Trust me, there will be plenty of time after the report is finalized for you to think about/obsess over the diagnosis 😉

                                        Have a great day,

                                        VL

                                        ChemistLN
                                        Participant

                                          The dermatologist called again today.  She started off my saying that they don't have a diagnosis even after the second opinion (local) and now they want to send it off to California for further testing.  I never know what to say when I'm on the phone with her.  I'm obviously thankful that they are taking the time to make the right diagnosis but she said it could be another 2-3 weeks.  I don't know what to ask or what to say.  

                                          Has anyone heard of this?

                                          Thank you!

                                          LNM

                                          ChemistLN
                                          Participant

                                            Thank you so much for your help! 

                                            ChemistLN
                                            Participant

                                              Thank you so much for your help! 

                                              Janner
                                              Participant

                                                It's not the number of cells.  There are two general areas they look at.  Architecture, or how the melanocytes are configured – and cell structure, whether the cell itself is showing mutations.  It's a combination of both that determine atypical lesion versus melanoma, and it's not a cut and dried diagnosis.  It's more on a  sliding scale where all factors are evaluated and "added up" to be either benign, atypical or melanoma.  Things like if a lot of cells are at the epidermal/dermal junction or if there are immature cells and MANY other things kind of determine where the lesion stands. 

                                                My Dad was at the VA – his pathology was sent to the nearby cancer center for diagnosis.  It was part of the Cancer Center, University and VA teaching group. 

                                                As for taking more tissue, it totally depends on what is finally decided on the diagnosis.

                                                Janner
                                                Participant

                                                  It's not the number of cells.  There are two general areas they look at.  Architecture, or how the melanocytes are configured – and cell structure, whether the cell itself is showing mutations.  It's a combination of both that determine atypical lesion versus melanoma, and it's not a cut and dried diagnosis.  It's more on a  sliding scale where all factors are evaluated and "added up" to be either benign, atypical or melanoma.  Things like if a lot of cells are at the epidermal/dermal junction or if there are immature cells and MANY other things kind of determine where the lesion stands. 

                                                  My Dad was at the VA – his pathology was sent to the nearby cancer center for diagnosis.  It was part of the Cancer Center, University and VA teaching group. 

                                                  As for taking more tissue, it totally depends on what is finally decided on the diagnosis.

                                                  ChemistLN
                                                  Participant

                                                    Thank you so much for your reply.  I was surprised to hear the dermatopathologist was the one requesting more information too.  I'm in academia, so our health insurance requires us to use the university teaching hospital.  Maybe it was just a teaching moment?  

                                                    My dad had two lesions and they aren't sure which one could have been primary.  He had one on his forehead and one on his calf.  He had 11 lymph nodes removed in his leg with 6 coming back metastatic. 

                                                    Thanks for explaining the staining process.  I barely remember learning about this in an undergrad cell bio class.  Do you know if the number of melanocytes is what differentiates an atypical mole from melanoma?  If it turns out that it is difficult to read, will they usually request more tissue?  

                                                    Thanks again!

                                                    ChemistLN
                                                    Participant

                                                      Thank you so much for your reply.  I was surprised to hear the dermatopathologist was the one requesting more information too.  I'm in academia, so our health insurance requires us to use the university teaching hospital.  Maybe it was just a teaching moment?  

                                                      My dad had two lesions and they aren't sure which one could have been primary.  He had one on his forehead and one on his calf.  He had 11 lymph nodes removed in his leg with 6 coming back metastatic. 

                                                      Thanks for explaining the staining process.  I barely remember learning about this in an undergrad cell bio class.  Do you know if the number of melanocytes is what differentiates an atypical mole from melanoma?  If it turns out that it is difficult to read, will they usually request more tissue?  

                                                      Thanks again!

                                                      ChemistLN
                                                      Participant

                                                        I'm still waiting to hear back about my biopsy that was performed August 5th.  Apparently they weren't able to decide because the moles were on my breast and the skin can look different just from being in a "special region."  She said it was either melanoma or milk line nevi.  

                                                        I hate to even ask for more advice when so many people have things much worse.  So, I apologize if my questions or comments seem insincere.  

                                                        If it's melanoma, I'm assuming the next step would a wide excision (I'm going based on my dad's case, although he's much worse.)  Does a wide excision always need to be done?  

                                                        Also, on an insurance related note.  I know it will come down to my specific insurance and I'll be stuck paying regardless, but does insurance usually cover second opinions for pathology?  I wasn't given any notification about the samples being sent to UCSF until they were already there.  I'm glad they are seeking a second opinion and doing additional tests, just wondering what might be headed my way as far as bills.

                                                        Thanks again to everyone who takes time to read these.  My thoughts are with you all.  And thanks for your patience with all the newcomers or people with questions.  It really does mean the world to me.

                                                        LNM

                                                        ChemistLN
                                                        Participant

                                                          I'm still waiting to hear back about my biopsy that was performed August 5th.  Apparently they weren't able to decide because the moles were on my breast and the skin can look different just from being in a "special region."  She said it was either melanoma or milk line nevi.  

                                                          I hate to even ask for more advice when so many people have things much worse.  So, I apologize if my questions or comments seem insincere.  

                                                          If it's melanoma, I'm assuming the next step would a wide excision (I'm going based on my dad's case, although he's much worse.)  Does a wide excision always need to be done?  

                                                          Also, on an insurance related note.  I know it will come down to my specific insurance and I'll be stuck paying regardless, but does insurance usually cover second opinions for pathology?  I wasn't given any notification about the samples being sent to UCSF until they were already there.  I'm glad they are seeking a second opinion and doing additional tests, just wondering what might be headed my way as far as bills.

                                                          Thanks again to everyone who takes time to read these.  My thoughts are with you all.  And thanks for your patience with all the newcomers or people with questions.  It really does mean the world to me.

                                                          LNM

                                                          ChemistLN
                                                          Participant

                                                            I'm still waiting to hear back about my biopsy that was performed August 5th.  Apparently they weren't able to decide because the moles were on my breast and the skin can look different just from being in a "special region."  She said it was either melanoma or milk line nevi.  

                                                            I hate to even ask for more advice when so many people have things much worse.  So, I apologize if my questions or comments seem insincere.  

                                                            If it's melanoma, I'm assuming the next step would a wide excision (I'm going based on my dad's case, although he's much worse.)  Does a wide excision always need to be done?  

                                                            Also, on an insurance related note.  I know it will come down to my specific insurance and I'll be stuck paying regardless, but does insurance usually cover second opinions for pathology?  I wasn't given any notification about the samples being sent to UCSF until they were already there.  I'm glad they are seeking a second opinion and doing additional tests, just wondering what might be headed my way as far as bills.

                                                            Thanks again to everyone who takes time to read these.  My thoughts are with you all.  And thanks for your patience with all the newcomers or people with questions.  It really does mean the world to me.

                                                            LNM

                                                          Janner
                                                          Participant

                                                            Honestly, I can't imagine the questions about your Dad being related to your pathology.  The BRAF mutation found in melanoma… I haven't read that it is an inherited mutation.  Maybe I missed that somewhere.  So I'd be confused by the question, too.

                                                            Stains will stain ALL melanocytes – whether normal, atypical or melanoma.  The stains just help melanocytes (all varieties) show up on the slides better.  The pathologist can see the melanocytes and then can make a determination on normal, atypical or melanoma.  There are some melanomas or even benign lesions that are just "difficult" to read.  At least they are seeking a second opinion on your behalf.  I'm unclear from your post if they ever found a primary melanoma for your father?

                                                            Janner
                                                            Participant

                                                              Honestly, I can't imagine the questions about your Dad being related to your pathology.  The BRAF mutation found in melanoma… I haven't read that it is an inherited mutation.  Maybe I missed that somewhere.  So I'd be confused by the question, too.

                                                              Stains will stain ALL melanocytes – whether normal, atypical or melanoma.  The stains just help melanocytes (all varieties) show up on the slides better.  The pathologist can see the melanocytes and then can make a determination on normal, atypical or melanoma.  There are some melanomas or even benign lesions that are just "difficult" to read.  At least they are seeking a second opinion on your behalf.  I'm unclear from your post if they ever found a primary melanoma for your father?

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