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Its back after 15 months NED

Forums General Melanoma Community Its back after 15 months NED

  • Post
    Wally
    Participant
      I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC.

      I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC. If the face thing proves to be possitive they intend applying a drug called Ipilimumab and/or Interferan (not Chemo or radiation as apparently that is not effective against Melenoma). Should get results of Biopsy by Thursday or Friday. It appears this is the cause of the pain in my chest – hard to believe because my understanding is that Melanoma is painless.
      Is this the right treatment?
      Thank you all for your valuable input, much appreciated.
      Kindest regards to all the worriors
      Wally
    Viewing 8 reply threads
    • Replies
        JC
        Participant

          Sorry to hear.  Did I read your profile correctly that you were initially in situ?  I thought in situ does not/cannot spread, is 100% curable?  Was your initial pathology for sure correct? 

          JC
          Participant

            Sorry to hear.  Did I read your profile correctly that you were initially in situ?  I thought in situ does not/cannot spread, is 100% curable?  Was your initial pathology for sure correct? 

              Wally
              Participant

                Yes, you read correctly. That is exactly what my Histological Report and the surgeon's report states. I was told that even my Lymphnodes were clear and that I need only have follow-ups every 6 months. When I went for my final check-up 5 years later, a blood count indicated all was normal and I was told there was no need for further follow-ups. I was coughing quite badly at the time and thinking it was a chest infection, my GP ordered an X-ray of my chest that indicated the tumor. I went to my Oncologist and told her that this clear diagnosis was not so clear. She ordered a Pet Scan that confirmed the tumor. I had the Lobectomy and again told all margins were clear, that we got it in time and that after the op my worries would be over. The report after the op confirmed that I had stage 4 Mets Melanoma, the primary being the mole on my ear. I have had quarterly check-ups every 3 months since the op in April last year. Each time blood was drawn that indicated low counts not justifying further action. On my last visit I suggested to the Oncologist that perhaps a Pet Scan should be taken to confirm that everthing was clear as I felt uncomfortable with not having had any detailed check-ups. The pet scan was ordered and the rest of my tale of woe you know.

                So yes, believe me, in-situ for Melanoma is no guarantee that it will not return. But bear in mind we all have different make-ups and what happened to me does not mean it will apply to you or anybody else for that matter. Reading this forum should be regared as a guide and not taken as gospel as we all react diferently to different drugs / procedures. I must say that I was totally gobsmacked when I got this latest news.

                Wally
                Participant

                  Yes, you read correctly. That is exactly what my Histological Report and the surgeon's report states. I was told that even my Lymphnodes were clear and that I need only have follow-ups every 6 months. When I went for my final check-up 5 years later, a blood count indicated all was normal and I was told there was no need for further follow-ups. I was coughing quite badly at the time and thinking it was a chest infection, my GP ordered an X-ray of my chest that indicated the tumor. I went to my Oncologist and told her that this clear diagnosis was not so clear. She ordered a Pet Scan that confirmed the tumor. I had the Lobectomy and again told all margins were clear, that we got it in time and that after the op my worries would be over. The report after the op confirmed that I had stage 4 Mets Melanoma, the primary being the mole on my ear. I have had quarterly check-ups every 3 months since the op in April last year. Each time blood was drawn that indicated low counts not justifying further action. On my last visit I suggested to the Oncologist that perhaps a Pet Scan should be taken to confirm that everthing was clear as I felt uncomfortable with not having had any detailed check-ups. The pet scan was ordered and the rest of my tale of woe you know.

                  So yes, believe me, in-situ for Melanoma is no guarantee that it will not return. But bear in mind we all have different make-ups and what happened to me does not mean it will apply to you or anybody else for that matter. Reading this forum should be regared as a guide and not taken as gospel as we all react diferently to different drugs / procedures. I must say that I was totally gobsmacked when I got this latest news.

                  JC
                  Participant

                    I don't know what to believe anymore.  I've always heard in situ is 100% curable and is incapable of metastasis.  That is it happens, it must be a mistake in pathology and initially was not really in situ or had extensive regression.  Otherwise, pure in situ cannot spread if removed at that stage.

                    JC
                    Participant

                      I don't know what to believe anymore.  I've always heard in situ is 100% curable and is incapable of metastasis.  That is it happens, it must be a mistake in pathology and initially was not really in situ or had extensive regression.  Otherwise, pure in situ cannot spread if removed at that stage.

                      Harry in Fair Oaks
                      Participant

                        Sometimes (rarely) mistakes are made in the collection of the specimen or by the pathologist.  You are much much more likely to hear about such things on this board, where the these rare and unfortunate cases tend to be discussed.  We must keep our  perspective – in the general population of people diagnosed with in situ, the rate of recurrence is essentially zero.

                        Best wishes,

                        Harry

                        Harry in Fair Oaks
                        Participant

                          Sometimes (rarely) mistakes are made in the collection of the specimen or by the pathologist.  You are much much more likely to hear about such things on this board, where the these rare and unfortunate cases tend to be discussed.  We must keep our  perspective – in the general population of people diagnosed with in situ, the rate of recurrence is essentially zero.

                          Best wishes,

                          Harry

                          JC
                          Participant

                            The other unexpected thing to me is blood work would be normal.  Wouldn't you see an elevated white cell count, or something out of range?

                            JC
                            Participant

                              The other unexpected thing to me is blood work would be normal.  Wouldn't you see an elevated white cell count, or something out of range?

                              Janner
                              Participant

                                There are no reliable blood work indications for melanoma mets.  There are some things that can be monitored for change – LDH enzyme might show liver damage – but even that isn't any guarantee.  I know of someone who had 70% of her liver involved and still had normal LDH levels.  Maybe in the future, blood work will be able to show more.  But for now, it really isn't much of an indication of anything conclusive.

                                Janner
                                Participant

                                  There are no reliable blood work indications for melanoma mets.  There are some things that can be monitored for change – LDH enzyme might show liver damage – but even that isn't any guarantee.  I know of someone who had 70% of her liver involved and still had normal LDH levels.  Maybe in the future, blood work will be able to show more.  But for now, it really isn't much of an indication of anything conclusive.

                                  Janner
                                  Participant

                                    There are no reliable blood work indications for melanoma mets.  There are some things that can be monitored for change – LDH enzyme might show liver damage – but even that isn't any guarantee.  I know of someone who had 70% of her liver involved and still had normal LDH levels.  Maybe in the future, blood work will be able to show more.  But for now, it really isn't much of an indication of anything conclusive.

                                    Harry in Fair Oaks
                                    Participant

                                      No.  Blood work is essentially useless for the detection of melanoma recurrence.  It would only show something wrong when organs (such as liver) are thoroughly compromised – and by then the patient would be symptomatic.

                                      Best wishes,

                                      Harry

                                      Harry in Fair Oaks
                                      Participant

                                        No.  Blood work is essentially useless for the detection of melanoma recurrence.  It would only show something wrong when organs (such as liver) are thoroughly compromised – and by then the patient would be symptomatic.

                                        Best wishes,

                                        Harry

                                        Harry in Fair Oaks
                                        Participant

                                          No.  Blood work is essentially useless for the detection of melanoma recurrence.  It would only show something wrong when organs (such as liver) are thoroughly compromised – and by then the patient would be symptomatic.

                                          Best wishes,

                                          Harry

                                          JC
                                          Participant

                                            The other unexpected thing to me is blood work would be normal.  Wouldn't you see an elevated white cell count, or something out of range?

                                            Harry in Fair Oaks
                                            Participant

                                              Sometimes (rarely) mistakes are made in the collection of the specimen or by the pathologist.  You are much much more likely to hear about such things on this board, where the these rare and unfortunate cases tend to be discussed.  We must keep our  perspective – in the general population of people diagnosed with in situ, the rate of recurrence is essentially zero.

                                              Best wishes,

                                              Harry

                                              JC
                                              Participant

                                                I don't know what to believe anymore.  I've always heard in situ is 100% curable and is incapable of metastasis.  That is it happens, it must be a mistake in pathology and initially was not really in situ or had extensive regression.  Otherwise, pure in situ cannot spread if removed at that stage.

                                                MichaelFL
                                                Participant

                                                  I am a little unclear on a few things. You mentiion insitu, but your profile states depth is up to 1mm. Also, you mention your nodes are clear? Did you also have a SNB-sentinel node biopsy?

                                                  If your melanoma primary had a depth, it was not insitu. Insitu means in place, and it has no depth.

                                                  MichaelFL
                                                  Participant

                                                    I am a little unclear on a few things. You mentiion insitu, but your profile states depth is up to 1mm. Also, you mention your nodes are clear? Did you also have a SNB-sentinel node biopsy?

                                                    If your melanoma primary had a depth, it was not insitu. Insitu means in place, and it has no depth.

                                                    Harry in Fair Oaks
                                                    Participant

                                                      I believe the "depth is up to 1 mm" entry is because of the input procedure in the profile creation page.  It only lets you pick a range, and that is the first and most appropriate one for a very shallow lesion.

                                                      The issue of node involvement is really not relevant in this case.  By the way, melanoma does spread even with negative SNB results.  It can go to directly to the blood stream, bypassing the lymph system.

                                                      Best wishes,

                                                      Harry

                                                      Harry in Fair Oaks
                                                      Participant

                                                        I believe the "depth is up to 1 mm" entry is because of the input procedure in the profile creation page.  It only lets you pick a range, and that is the first and most appropriate one for a very shallow lesion.

                                                        The issue of node involvement is really not relevant in this case.  By the way, melanoma does spread even with negative SNB results.  It can go to directly to the blood stream, bypassing the lymph system.

                                                        Best wishes,

                                                        Harry

                                                        Harry in Fair Oaks
                                                        Participant

                                                          I believe the "depth is up to 1 mm" entry is because of the input procedure in the profile creation page.  It only lets you pick a range, and that is the first and most appropriate one for a very shallow lesion.

                                                          The issue of node involvement is really not relevant in this case.  By the way, melanoma does spread even with negative SNB results.  It can go to directly to the blood stream, bypassing the lymph system.

                                                          Best wishes,

                                                          Harry

                                                          MichaelFL
                                                          Participant

                                                            I am a little unclear on a few things. You mentiion insitu, but your profile states depth is up to 1mm. Also, you mention your nodes are clear? Did you also have a SNB-sentinel node biopsy?

                                                            If your melanoma primary had a depth, it was not insitu. Insitu means in place, and it has no depth.

                                                            Wally
                                                            Participant

                                                              Yes, you read correctly. That is exactly what my Histological Report and the surgeon's report states. I was told that even my Lymphnodes were clear and that I need only have follow-ups every 6 months. When I went for my final check-up 5 years later, a blood count indicated all was normal and I was told there was no need for further follow-ups. I was coughing quite badly at the time and thinking it was a chest infection, my GP ordered an X-ray of my chest that indicated the tumor. I went to my Oncologist and told her that this clear diagnosis was not so clear. She ordered a Pet Scan that confirmed the tumor. I had the Lobectomy and again told all margins were clear, that we got it in time and that after the op my worries would be over. The report after the op confirmed that I had stage 4 Mets Melanoma, the primary being the mole on my ear. I have had quarterly check-ups every 3 months since the op in April last year. Each time blood was drawn that indicated low counts not justifying further action. On my last visit I suggested to the Oncologist that perhaps a Pet Scan should be taken to confirm that everthing was clear as I felt uncomfortable with not having had any detailed check-ups. The pet scan was ordered and the rest of my tale of woe you know.

                                                              So yes, believe me, in-situ for Melanoma is no guarantee that it will not return. But bear in mind we all have different make-ups and what happened to me does not mean it will apply to you or anybody else for that matter. Reading this forum should be regared as a guide and not taken as gospel as we all react diferently to different drugs / procedures. I must say that I was totally gobsmacked when I got this latest news.

                                                            JC
                                                            Participant

                                                              Sorry to hear.  Did I read your profile correctly that you were initially in situ?  I thought in situ does not/cannot spread, is 100% curable?  Was your initial pathology for sure correct? 

                                                              Harry in Fair Oaks
                                                              Participant

                                                                Melanoma is unpredictable in how and where it presents in a recurrence.  Sometime there are symptoms, sometimes not.

                                                                The first drug you mention is also known by its commercial name of Yervoy (at least in the USA).  It is certainly a great first choice.  In the USA, interferon is usually not given to Stage IV patients.

                                                                Another drug of great promise is Zelboraf – but for this your tumor must have the right genetic mutation.  You should discuss with your oncologist having your tumor tested for this mutation (I am assuming that Zelboraf is available where you are).

                                                                Make sure that you are being seen by an oncologist who is up to date on all the new developments in melanoma treatment.  If there is a center in your country that specializes in melanoma, you should certainly be seen there for a second opinion.

                                                                Keep your spirits up.  There are many long-term survivors of advanced melanoma here.  I was first diagnosed with Stage IV disease (also in lung) over 12 years ago!

                                                                Best wishes,

                                                                Harry

                                                                Harry in Fair Oaks
                                                                Participant

                                                                  Melanoma is unpredictable in how and where it presents in a recurrence.  Sometime there are symptoms, sometimes not.

                                                                  The first drug you mention is also known by its commercial name of Yervoy (at least in the USA).  It is certainly a great first choice.  In the USA, interferon is usually not given to Stage IV patients.

                                                                  Another drug of great promise is Zelboraf – but for this your tumor must have the right genetic mutation.  You should discuss with your oncologist having your tumor tested for this mutation (I am assuming that Zelboraf is available where you are).

                                                                  Make sure that you are being seen by an oncologist who is up to date on all the new developments in melanoma treatment.  If there is a center in your country that specializes in melanoma, you should certainly be seen there for a second opinion.

                                                                  Keep your spirits up.  There are many long-term survivors of advanced melanoma here.  I was first diagnosed with Stage IV disease (also in lung) over 12 years ago!

                                                                  Best wishes,

                                                                  Harry

                                                                  Harry in Fair Oaks
                                                                  Participant

                                                                    Melanoma is unpredictable in how and where it presents in a recurrence.  Sometime there are symptoms, sometimes not.

                                                                    The first drug you mention is also known by its commercial name of Yervoy (at least in the USA).  It is certainly a great first choice.  In the USA, interferon is usually not given to Stage IV patients.

                                                                    Another drug of great promise is Zelboraf – but for this your tumor must have the right genetic mutation.  You should discuss with your oncologist having your tumor tested for this mutation (I am assuming that Zelboraf is available where you are).

                                                                    Make sure that you are being seen by an oncologist who is up to date on all the new developments in melanoma treatment.  If there is a center in your country that specializes in melanoma, you should certainly be seen there for a second opinion.

                                                                    Keep your spirits up.  There are many long-term survivors of advanced melanoma here.  I was first diagnosed with Stage IV disease (also in lung) over 12 years ago!

                                                                    Best wishes,

                                                                    Harry

                                                                    Tina D
                                                                    Participant

                                                                      I am so sorry you are having to go through this, but, like others have said – there are many long-term stories on this board. Melanoma is such an unpredictable disease. I have been sage 4 for 7 years, so I add my voice to the others!

                                                                      I completely agree with the advice from Harry posted above on all counts. Be sure you get in to someone who is current in all that is available, for these days there is new information on a frequent basis.

                                                                      Kind regards and prayers

                                                                      Tina D

                                                                      Tina D
                                                                      Participant

                                                                        I am so sorry you are having to go through this, but, like others have said – there are many long-term stories on this board. Melanoma is such an unpredictable disease. I have been sage 4 for 7 years, so I add my voice to the others!

                                                                        I completely agree with the advice from Harry posted above on all counts. Be sure you get in to someone who is current in all that is available, for these days there is new information on a frequent basis.

                                                                        Kind regards and prayers

                                                                        Tina D

                                                                          Wally
                                                                          Participant

                                                                            Pretty6 frustrating. I typed out the whol;e Final Histology Report and somehow mit got lost or wiped out.

                                                                            Herewith just a short extract f salient parts

                                                                            Macroscopy
                                                                            Ellipse of skin measuring 20 x 10 x 25mm in diameter with a pigmented lesion on the surface measuring 7 mm in diameter.

                                                                            Microscopy:

                                                                            Sections of this tissue confirm the clinical diagnosis oof a lentigo maligna (malignant melanoma in-situ)

                                                                            No infiltration of the dermis is present (Breslow 0 Clarke level 1)

                                                                            I hiope this clarifies some of the issues raised.

                                                                            I would like to thank you all for your input. We do not have a great selection of oncologists here in SA. You go to the guy that is closest to you and hope for the best.

                                                                            Wally
                                                                            Participant

                                                                              Pretty6 frustrating. I typed out the whol;e Final Histology Report and somehow mit got lost or wiped out.

                                                                              Herewith just a short extract f salient parts

                                                                              Macroscopy
                                                                              Ellipse of skin measuring 20 x 10 x 25mm in diameter with a pigmented lesion on the surface measuring 7 mm in diameter.

                                                                              Microscopy:

                                                                              Sections of this tissue confirm the clinical diagnosis oof a lentigo maligna (malignant melanoma in-situ)

                                                                              No infiltration of the dermis is present (Breslow 0 Clarke level 1)

                                                                              I hiope this clarifies some of the issues raised.

                                                                              I would like to thank you all for your input. We do not have a great selection of oncologists here in SA. You go to the guy that is closest to you and hope for the best.

                                                                              JC
                                                                              Participant

                                                                                I thought I had heard a pathologist once say that lentigo MM can travel down hair follicles, unlike other types of MM.  So, maybe that explains in situ that spreads? 

                                                                                JC
                                                                                Participant

                                                                                  I thought I had heard a pathologist once say that lentigo MM can travel down hair follicles, unlike other types of MM.  So, maybe that explains in situ that spreads? 

                                                                                  Wally
                                                                                  Participant

                                                                                    I have not heard of that but I have since established through various articles that most Melanoma's (that includes in-situ cancers) do enter your blood stream and can re-manifest itself anywhere else in your body – primarily in the lungs, ribs and liver. In my case the lungs. So the assertion that it can travel down hair follicles seems possible. I will try to remember to ask my Oncologist when I see her to discuss the outcome of my biopsy and the process going forward for my op on the lung to remove the newest tumor.

                                                                                    I have enjoyed reading your perspective and also that of the other contributors. I have made quite a few posts over the past year or so but this was the first constructive interaction I have had.

                                                                                    Thank you all and may you all be blessed with speedy recovery or at least remission.

                                                                                    Wally
                                                                                    Participant

                                                                                      I have not heard of that but I have since established through various articles that most Melanoma's (that includes in-situ cancers) do enter your blood stream and can re-manifest itself anywhere else in your body – primarily in the lungs, ribs and liver. In my case the lungs. So the assertion that it can travel down hair follicles seems possible. I will try to remember to ask my Oncologist when I see her to discuss the outcome of my biopsy and the process going forward for my op on the lung to remove the newest tumor.

                                                                                      I have enjoyed reading your perspective and also that of the other contributors. I have made quite a few posts over the past year or so but this was the first constructive interaction I have had.

                                                                                      Thank you all and may you all be blessed with speedy recovery or at least remission.

                                                                                      Wally
                                                                                      Participant

                                                                                        I have not heard of that but I have since established through various articles that most Melanoma's (that includes in-situ cancers) do enter your blood stream and can re-manifest itself anywhere else in your body – primarily in the lungs, ribs and liver. In my case the lungs. So the assertion that it can travel down hair follicles seems possible. I will try to remember to ask my Oncologist when I see her to discuss the outcome of my biopsy and the process going forward for my op on the lung to remove the newest tumor.

                                                                                        I have enjoyed reading your perspective and also that of the other contributors. I have made quite a few posts over the past year or so but this was the first constructive interaction I have had.

                                                                                        Thank you all and may you all be blessed with speedy recovery or at least remission.

                                                                                        JC
                                                                                        Participant

                                                                                          I am not sure that is accurate that most melanomas enter the bloodstream.  First, I believe melanoma mostly disseminates via the lymphatic system, but can bypass that via the bloodstream if it was thick enough/deep enough in the primary lesion to reach the blood vessels.  If most melanomas, even in situ, entered the bloodstream as you say, the survival rates for early thin melanomas would not be as high as they are reported.

                                                                                          JC
                                                                                          Participant

                                                                                            I am not sure that is accurate that most melanomas enter the bloodstream.  First, I believe melanoma mostly disseminates via the lymphatic system, but can bypass that via the bloodstream if it was thick enough/deep enough in the primary lesion to reach the blood vessels.  If most melanomas, even in situ, entered the bloodstream as you say, the survival rates for early thin melanomas would not be as high as they are reported.

                                                                                            JC
                                                                                            Participant

                                                                                              I am not sure that is accurate that most melanomas enter the bloodstream.  First, I believe melanoma mostly disseminates via the lymphatic system, but can bypass that via the bloodstream if it was thick enough/deep enough in the primary lesion to reach the blood vessels.  If most melanomas, even in situ, entered the bloodstream as you say, the survival rates for early thin melanomas would not be as high as they are reported.

                                                                                              Wally
                                                                                              Participant

                                                                                                We live and learn. I really do not have all the answere, just mentioning what I have read or heard. Thanks for that. I will discuss these with my Oncologist IDC.

                                                                                                Wally
                                                                                                Participant

                                                                                                  We live and learn. I really do not have all the answere, just mentioning what I have read or heard. Thanks for that. I will discuss these with my Oncologist IDC.

                                                                                                  Wally
                                                                                                  Participant

                                                                                                    We live and learn. I really do not have all the answere, just mentioning what I have read or heard. Thanks for that. I will discuss these with my Oncologist IDC.

                                                                                                    JC
                                                                                                    Participant

                                                                                                      I thought I had heard a pathologist once say that lentigo MM can travel down hair follicles, unlike other types of MM.  So, maybe that explains in situ that spreads? 

                                                                                                      Wally
                                                                                                      Participant

                                                                                                        Pretty6 frustrating. I typed out the whol;e Final Histology Report and somehow mit got lost or wiped out.

                                                                                                        Herewith just a short extract f salient parts

                                                                                                        Macroscopy
                                                                                                        Ellipse of skin measuring 20 x 10 x 25mm in diameter with a pigmented lesion on the surface measuring 7 mm in diameter.

                                                                                                        Microscopy:

                                                                                                        Sections of this tissue confirm the clinical diagnosis oof a lentigo maligna (malignant melanoma in-situ)

                                                                                                        No infiltration of the dermis is present (Breslow 0 Clarke level 1)

                                                                                                        I hiope this clarifies some of the issues raised.

                                                                                                        I would like to thank you all for your input. We do not have a great selection of oncologists here in SA. You go to the guy that is closest to you and hope for the best.

                                                                                                      Tina D
                                                                                                      Participant

                                                                                                        I am so sorry you are having to go through this, but, like others have said – there are many long-term stories on this board. Melanoma is such an unpredictable disease. I have been sage 4 for 7 years, so I add my voice to the others!

                                                                                                        I completely agree with the advice from Harry posted above on all counts. Be sure you get in to someone who is current in all that is available, for these days there is new information on a frequent basis.

                                                                                                        Kind regards and prayers

                                                                                                        Tina D

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