Update on pathology report

Forums General Melanoma Community Update on pathology report

  • Post
    SOLE
    Participant

      So here is how it reads:

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        SOLE
        Participant

          Sentinel node 1: metastatic melanoma (rare isolated cells seen with immunohistochemy only) in one lymph node

           

          Sentinel node 2: absence of metastic melanoma in two lymph nodes

           

          Rare isolated cells. No numbers, no tumor burden because there doesn't seem to be any tumor in that lymph node. Seems to me that this is sub-micrometastasis.

          Will have more details next Thursday with onco surgeon and will have my first appointment with oncologist on oct 17th.

          Pathologist has staged me 3. 

           

          SOLE
          Participant

            Sentinel node 1: metastatic melanoma (rare isolated cells seen with immunohistochemy only) in one lymph node

             

            Sentinel node 2: absence of metastic melanoma in two lymph nodes

             

            Rare isolated cells. No numbers, no tumor burden because there doesn't seem to be any tumor in that lymph node. Seems to me that this is sub-micrometastasis.

            Will have more details next Thursday with onco surgeon and will have my first appointment with oncologist on oct 17th.

            Pathologist has staged me 3. 

             

            SOLE
            Participant

              Sentinel node 1: metastatic melanoma (rare isolated cells seen with immunohistochemy only) in one lymph node

               

              Sentinel node 2: absence of metastic melanoma in two lymph nodes

               

              Rare isolated cells. No numbers, no tumor burden because there doesn't seem to be any tumor in that lymph node. Seems to me that this is sub-micrometastasis.

              Will have more details next Thursday with onco surgeon and will have my first appointment with oncologist on oct 17th.

              Pathologist has staged me 3. 

               

              Bubbles
              Participant

                Dear SOLE,

                Yes, generally, with mets to a node…no matter how small…you are Stage III.  At this moment you are probably Stage III, NED (having "no evidence of disease").  I am not entirely certain about what you are looking for here…beyond a consolation we on the board are not entirely able to give because melanoma does not play by consistent rules.  The odds are, if you look at percentages, that you are done with melanoma.  However, that is not always the case.  I was you….in 2003.  I had a second primary with no positive nodes in 2007.  At both of those points I had no treatment other than surgery….mostly because there was none.  In 2010 I developed Stage IV melanoma with mets to lung, brain and tonsil.  After surgery to lung and tonsil….radiation to the brain met…I participated in a 2 1/2 year trial with an immunotherapy – anti-PD1 (Nivolumab, now called Opdivo….the med that Jimmy Carter and many others have now been treated with as it is now FDA approved) and have been NED ever since….with scans only last month.

                So….there are many folks who hear nothing further from melanoma having been in your place.  Then there are those like me.  The good news is that there are now adjuvant treatment options, if you choose to take them as well as better treatments for active disease….something unheard of in just 2010!

                If you want a good deal of information on micrometastasis and percentages, there are several pertinent articles on my blog.  Just enter "micrometastasis" in the search bubble at the top left corner.

                I wish you well.  Celeste

                Bubbles
                Participant

                  Dear SOLE,

                  Yes, generally, with mets to a node…no matter how small…you are Stage III.  At this moment you are probably Stage III, NED (having "no evidence of disease").  I am not entirely certain about what you are looking for here…beyond a consolation we on the board are not entirely able to give because melanoma does not play by consistent rules.  The odds are, if you look at percentages, that you are done with melanoma.  However, that is not always the case.  I was you….in 2003.  I had a second primary with no positive nodes in 2007.  At both of those points I had no treatment other than surgery….mostly because there was none.  In 2010 I developed Stage IV melanoma with mets to lung, brain and tonsil.  After surgery to lung and tonsil….radiation to the brain met…I participated in a 2 1/2 year trial with an immunotherapy – anti-PD1 (Nivolumab, now called Opdivo….the med that Jimmy Carter and many others have now been treated with as it is now FDA approved) and have been NED ever since….with scans only last month.

                  So….there are many folks who hear nothing further from melanoma having been in your place.  Then there are those like me.  The good news is that there are now adjuvant treatment options, if you choose to take them as well as better treatments for active disease….something unheard of in just 2010!

                  If you want a good deal of information on micrometastasis and percentages, there are several pertinent articles on my blog.  Just enter "micrometastasis" in the search bubble at the top left corner.

                  I wish you well.  Celeste

                    SOLE
                    Participant

                      Hi Celeste

                      This post was following my most recent one.

                      As of August 5th and 12th, PET and CT scans were clear. I had my WLE on sept 9th with clear margins and the lymph node report here.

                      I was looking for any insights as to the implication of the term "rare isolated cells" really meant.

                      As for the stats on your blog, i wasn't able to find much… (help?) Or can you post a few links here?

                      My primairy was intermediate 2.85mm although deep margins involved and it was really ulcerated. My melanoma was amelanotic and presented itself as a pyogenic granuloma…… And like pretty much all pyogenic granuloma, they ulcer! I also had TIL present non brisk, Perineural and Lymphovascular involvment absent and mitosis of 4/mm2 which I think is intermediate too. (Am I right?)

                      Anyway, the residual melanoma that was excised came back good with the same involvments absent and a mitosis of 0 and thus no TILs present (no more mel to fight… Am I right?)

                      Now, I need to find out about recurrence rate for my stage and OS. The stats I read were awful and I am turning to you to light my lantern please!

                      SOLE
                      Participant

                        Hi Celeste

                        This post was following my most recent one.

                        As of August 5th and 12th, PET and CT scans were clear. I had my WLE on sept 9th with clear margins and the lymph node report here.

                        I was looking for any insights as to the implication of the term "rare isolated cells" really meant.

                        As for the stats on your blog, i wasn't able to find much… (help?) Or can you post a few links here?

                        My primairy was intermediate 2.85mm although deep margins involved and it was really ulcerated. My melanoma was amelanotic and presented itself as a pyogenic granuloma…… And like pretty much all pyogenic granuloma, they ulcer! I also had TIL present non brisk, Perineural and Lymphovascular involvment absent and mitosis of 4/mm2 which I think is intermediate too. (Am I right?)

                        Anyway, the residual melanoma that was excised came back good with the same involvments absent and a mitosis of 0 and thus no TILs present (no more mel to fight… Am I right?)

                        Now, I need to find out about recurrence rate for my stage and OS. The stats I read were awful and I am turning to you to light my lantern please!

                        Bubbles
                        Participant

                          I've read your prior posts.  If you type in "micrometastasis" you will get several posts/articles with multiple links to more articles within.  But, I will post links for you.  However, the spam blocker will not let me post more than two at a time so this is arduous.  However, I had someone help me when I was you…so here you go:

                          What you need to think about is what you want to do now that you know your status….  Do you want to seek complete lymph node dissection?  Do you need full body scans?  You also have to face some harsh realities.  Your lesion was NOT a pyogenic granuloma…though it was misinterpreted as that.  It was melanoma.  Ulceration of a melanoma lesion (amelanocytic or otherwise) carries, unfortunately, a poorer prognosis.  The fact that you only had micrometastasis to your node is a good prognostic sign.  If you are male and a bit older…a good prognostic sign.  Your lesion was not thin…thicker lesions have a poorer prognosis.  But, you have to remember melanoma doesn't read what I write or what the data says.  It can be nice and go away.  Or it can come back later.  You have to learn the best you can.  Find a MELANOMA specialist to advise you.  And then make a decision about your care you can live with…then do so!  LIVE!!!!

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html

                          More in the next comment.  c

                           

                           

                          Bubbles
                          Participant

                            I've read your prior posts.  If you type in "micrometastasis" you will get several posts/articles with multiple links to more articles within.  But, I will post links for you.  However, the spam blocker will not let me post more than two at a time so this is arduous.  However, I had someone help me when I was you…so here you go:

                            What you need to think about is what you want to do now that you know your status….  Do you want to seek complete lymph node dissection?  Do you need full body scans?  You also have to face some harsh realities.  Your lesion was NOT a pyogenic granuloma…though it was misinterpreted as that.  It was melanoma.  Ulceration of a melanoma lesion (amelanocytic or otherwise) carries, unfortunately, a poorer prognosis.  The fact that you only had micrometastasis to your node is a good prognostic sign.  If you are male and a bit older…a good prognostic sign.  Your lesion was not thin…thicker lesions have a poorer prognosis.  But, you have to remember melanoma doesn't read what I write or what the data says.  It can be nice and go away.  Or it can come back later.  You have to learn the best you can.  Find a MELANOMA specialist to advise you.  And then make a decision about your care you can live with…then do so!  LIVE!!!!

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html

                            More in the next comment.  c

                             

                             

                            Bubbles
                            Participant

                              I am sorry there are no definitive answers for the questions you have.  I cannot tell you your specific risk for progression.  You have positive and negatives on your side.  My best advice is to seek the care of a melanoma specialist and ask everything you want to know…understanding that they do not have a crystal ball either.  Make sure your pathology includes testing for your BRAF status.  Something that may be important to you down the road.  Then…you have to decide if you want to watch and wait….and you will have to be vigilent and determine a follow-up plan, with the help of your oncologist, for yourself.  Or…do you want to seek adjunctive care?  You may choose to do CT scans of your body and an MRI of your brain to make sure you are melanoma free as best as scans can tell…and you probably are.  These tests will be far more important 6 months, to a year from now.  Ipilimumab is now FDA approved as an adjuvant for melanoma patients.  There are also many other trial options.  These are just a couple of examples:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html

                              Please make yourself as informed as you can…and you are working on that.  Seek a melanoma specialist.  Breathe.  Make a decision based on what you feel is right for you in regard to your care, treatment and follow-up.  And….LIVE!  That is the best that any of us can do.  I wish you well.  Celeste

                              Bubbles
                              Participant

                                I am sorry there are no definitive answers for the questions you have.  I cannot tell you your specific risk for progression.  You have positive and negatives on your side.  My best advice is to seek the care of a melanoma specialist and ask everything you want to know…understanding that they do not have a crystal ball either.  Make sure your pathology includes testing for your BRAF status.  Something that may be important to you down the road.  Then…you have to decide if you want to watch and wait….and you will have to be vigilent and determine a follow-up plan, with the help of your oncologist, for yourself.  Or…do you want to seek adjunctive care?  You may choose to do CT scans of your body and an MRI of your brain to make sure you are melanoma free as best as scans can tell…and you probably are.  These tests will be far more important 6 months, to a year from now.  Ipilimumab is now FDA approved as an adjuvant for melanoma patients.  There are also many other trial options.  These are just a couple of examples:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html

                                Please make yourself as informed as you can…and you are working on that.  Seek a melanoma specialist.  Breathe.  Make a decision based on what you feel is right for you in regard to your care, treatment and follow-up.  And….LIVE!  That is the best that any of us can do.  I wish you well.  Celeste

                                Bubbles
                                Participant

                                  Hope at least some of that helps.  Yours, c

                                  Bubbles
                                  Participant

                                    Hope at least some of that helps.  Yours, c

                                    SOLE
                                    Participant

                                      Thank you Celeste. The fact that you suggest I get my BRAF status is scary to me. Do I face stage 4 or can I remain stage 3?

                                      You also suggest I get new scans… I got a clear PET and CT in August. Are those too old already?

                                      I am a male 48 years old so maybe this is helping in the mix.

                                      Let me then ask you this: do you eat organic? Do you juice? Are you in favor of meditation and other complmentary measures to help ypu stay healthy? Do you have any recommendations?

                                      Thanks

                                      SOLE
                                      Participant

                                        Thank you Celeste. The fact that you suggest I get my BRAF status is scary to me. Do I face stage 4 or can I remain stage 3?

                                        You also suggest I get new scans… I got a clear PET and CT in August. Are those too old already?

                                        I am a male 48 years old so maybe this is helping in the mix.

                                        Let me then ask you this: do you eat organic? Do you juice? Are you in favor of meditation and other complmentary measures to help ypu stay healthy? Do you have any recommendations?

                                        Thanks

                                        Bubbles
                                        Participant

                                          I've already told you that you may never progress. If you had scans in August, no…you do not need to repeat them now. I missed that you had already had them done. Of course you need to know your BRAF status. That is not scary. It is rational. I have been a runner and eat well…mostly fruits and veg..my entire life. I still live that way and recommend that we all live healthy life styles to the best of our  abilities. Despite that, it did not protect me from melanoma in the first place…nor did it prevent me from advancing to Stage IV. Juicing and magical diets will not protect you either. Please really read the articles I've posted for you. See a melanoma specialist and make a rational plan of care for yourself. You will feel much better once you do. Yours, c

                                          Bubbles
                                          Participant

                                            I've already told you that you may never progress. If you had scans in August, no…you do not need to repeat them now. I missed that you had already had them done. Of course you need to know your BRAF status. That is not scary. It is rational. I have been a runner and eat well…mostly fruits and veg..my entire life. I still live that way and recommend that we all live healthy life styles to the best of our  abilities. Despite that, it did not protect me from melanoma in the first place…nor did it prevent me from advancing to Stage IV. Juicing and magical diets will not protect you either. Please really read the articles I've posted for you. See a melanoma specialist and make a rational plan of care for yourself. You will feel much better once you do. Yours, c

                                            Bubbles
                                            Participant

                                              I've already told you that you may never progress. If you had scans in August, no…you do not need to repeat them now. I missed that you had already had them done. Of course you need to know your BRAF status. That is not scary. It is rational. I have been a runner and eat well…mostly fruits and veg..my entire life. I still live that way and recommend that we all live healthy life styles to the best of our  abilities. Despite that, it did not protect me from melanoma in the first place…nor did it prevent me from advancing to Stage IV. Juicing and magical diets will not protect you either. Please really read the articles I've posted for you. See a melanoma specialist and make a rational plan of care for yourself. You will feel much better once you do. Yours, c

                                              SOLE
                                              Participant

                                                Thank you Celeste. The fact that you suggest I get my BRAF status is scary to me. Do I face stage 4 or can I remain stage 3?

                                                You also suggest I get new scans… I got a clear PET and CT in August. Are those too old already?

                                                I am a male 48 years old so maybe this is helping in the mix.

                                                Let me then ask you this: do you eat organic? Do you juice? Are you in favor of meditation and other complmentary measures to help ypu stay healthy? Do you have any recommendations?

                                                Thanks

                                                Bubbles
                                                Participant

                                                  Hope at least some of that helps.  Yours, c

                                                  Bubbles
                                                  Participant

                                                    I am sorry there are no definitive answers for the questions you have.  I cannot tell you your specific risk for progression.  You have positive and negatives on your side.  My best advice is to seek the care of a melanoma specialist and ask everything you want to know…understanding that they do not have a crystal ball either.  Make sure your pathology includes testing for your BRAF status.  Something that may be important to you down the road.  Then…you have to decide if you want to watch and wait….and you will have to be vigilent and determine a follow-up plan, with the help of your oncologist, for yourself.  Or…do you want to seek adjunctive care?  You may choose to do CT scans of your body and an MRI of your brain to make sure you are melanoma free as best as scans can tell…and you probably are.  These tests will be far more important 6 months, to a year from now.  Ipilimumab is now FDA approved as an adjuvant for melanoma patients.  There are also many other trial options.  These are just a couple of examples:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html

                                                    Please make yourself as informed as you can…and you are working on that.  Seek a melanoma specialist.  Breathe.  Make a decision based on what you feel is right for you in regard to your care, treatment and follow-up.  And….LIVE!  That is the best that any of us can do.  I wish you well.  Celeste

                                                    Bubbles
                                                    Participant

                                                      I've read your prior posts.  If you type in "micrometastasis" you will get several posts/articles with multiple links to more articles within.  But, I will post links for you.  However, the spam blocker will not let me post more than two at a time so this is arduous.  However, I had someone help me when I was you…so here you go:

                                                      What you need to think about is what you want to do now that you know your status….  Do you want to seek complete lymph node dissection?  Do you need full body scans?  You also have to face some harsh realities.  Your lesion was NOT a pyogenic granuloma…though it was misinterpreted as that.  It was melanoma.  Ulceration of a melanoma lesion (amelanocytic or otherwise) carries, unfortunately, a poorer prognosis.  The fact that you only had micrometastasis to your node is a good prognostic sign.  If you are male and a bit older…a good prognostic sign.  Your lesion was not thin…thicker lesions have a poorer prognosis.  But, you have to remember melanoma doesn't read what I write or what the data says.  It can be nice and go away.  Or it can come back later.  You have to learn the best you can.  Find a MELANOMA specialist to advise you.  And then make a decision about your care you can live with…then do so!  LIVE!!!!

                                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

                                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html

                                                      More in the next comment.  c

                                                       

                                                       

                                                      SOLE
                                                      Participant

                                                        Hi Celeste

                                                        This post was following my most recent one.

                                                        As of August 5th and 12th, PET and CT scans were clear. I had my WLE on sept 9th with clear margins and the lymph node report here.

                                                        I was looking for any insights as to the implication of the term "rare isolated cells" really meant.

                                                        As for the stats on your blog, i wasn't able to find much… (help?) Or can you post a few links here?

                                                        My primairy was intermediate 2.85mm although deep margins involved and it was really ulcerated. My melanoma was amelanotic and presented itself as a pyogenic granuloma…… And like pretty much all pyogenic granuloma, they ulcer! I also had TIL present non brisk, Perineural and Lymphovascular involvment absent and mitosis of 4/mm2 which I think is intermediate too. (Am I right?)

                                                        Anyway, the residual melanoma that was excised came back good with the same involvments absent and a mitosis of 0 and thus no TILs present (no more mel to fight… Am I right?)

                                                        Now, I need to find out about recurrence rate for my stage and OS. The stats I read were awful and I am turning to you to light my lantern please!

                                                      Bubbles
                                                      Participant

                                                        Dear SOLE,

                                                        Yes, generally, with mets to a node…no matter how small…you are Stage III.  At this moment you are probably Stage III, NED (having "no evidence of disease").  I am not entirely certain about what you are looking for here…beyond a consolation we on the board are not entirely able to give because melanoma does not play by consistent rules.  The odds are, if you look at percentages, that you are done with melanoma.  However, that is not always the case.  I was you….in 2003.  I had a second primary with no positive nodes in 2007.  At both of those points I had no treatment other than surgery….mostly because there was none.  In 2010 I developed Stage IV melanoma with mets to lung, brain and tonsil.  After surgery to lung and tonsil….radiation to the brain met…I participated in a 2 1/2 year trial with an immunotherapy – anti-PD1 (Nivolumab, now called Opdivo….the med that Jimmy Carter and many others have now been treated with as it is now FDA approved) and have been NED ever since….with scans only last month.

                                                        So….there are many folks who hear nothing further from melanoma having been in your place.  Then there are those like me.  The good news is that there are now adjuvant treatment options, if you choose to take them as well as better treatments for active disease….something unheard of in just 2010!

                                                        If you want a good deal of information on micrometastasis and percentages, there are several pertinent articles on my blog.  Just enter "micrometastasis" in the search bubble at the top left corner.

                                                        I wish you well.  Celeste

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