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Recurring Melanomas
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Recurring Melanomas

› Forums › Cutaneous Melanoma Community › Recurring Melanomas

  • Post
    • February 20, 2012 at 5:14 pm
    kwb
    Participant

      I'm new to this bulletin board.  Just found out this morning that I have two (2) more melanomas according to recent biopsies.  Fortunately, both spots are in situ.  However, these latest spots are numbers five and six for me.  Skin doctor and oncologist are befuddled as to what is going on.  PET/CT scans and radiology (lymph nodes) have all come back negative – again, a good thing.

      I'm new to this bulletin board.  Just found out this morning that I have two (2) more melanomas according to recent biopsies.  Fortunately, both spots are in situ.  However, these latest spots are numbers five and six for me.  Skin doctor and oncologist are befuddled as to what is going on.  PET/CT scans and radiology (lymph nodes) have all come back negative – again, a good thing.

      My last major surgery was this past November (2011), which I am still recovering from.  Obviously, I'm concerned about the rapid reoccurrence of these cancerous locations.

      Just wanted to share my concern.  Any thoughts would be greatly appreciated.

       

       

    Viewing 11 reply threads
    • Replies
        • February 20, 2012 at 6:24 pm
        Erinmay22
        Participant

          I don't really have an answer for you but was curious if these spots were near your original melanoma and what type you had?  My original spot was removed Oct 2010 – upper right back and nodular.  I was just in to see my derm last Monday and they removed 2 more spots (no results yet).  Both near my WLE scar.  1 the derm was concerned about the other I was concerned about.  It had simliar characteristics as my melanoma spot – so we agreed.  When in doubt – cut it out 🙂 

          I do have several other spots they are monitoring for now.  They took pictures and retake when I go back in for check-ups. 

          Best of luck!  Positive thoughts and prayers your way!

          Erin

          • February 20, 2012 at 6:24 pm
          Erinmay22
          Participant

            I don't really have an answer for you but was curious if these spots were near your original melanoma and what type you had?  My original spot was removed Oct 2010 – upper right back and nodular.  I was just in to see my derm last Monday and they removed 2 more spots (no results yet).  Both near my WLE scar.  1 the derm was concerned about the other I was concerned about.  It had simliar characteristics as my melanoma spot – so we agreed.  When in doubt – cut it out 🙂 

            I do have several other spots they are monitoring for now.  They took pictures and retake when I go back in for check-ups. 

            Best of luck!  Positive thoughts and prayers your way!

            Erin

            • February 20, 2012 at 6:24 pm
            Erinmay22
            Participant

              I don't really have an answer for you but was curious if these spots were near your original melanoma and what type you had?  My original spot was removed Oct 2010 – upper right back and nodular.  I was just in to see my derm last Monday and they removed 2 more spots (no results yet).  Both near my WLE scar.  1 the derm was concerned about the other I was concerned about.  It had simliar characteristics as my melanoma spot – so we agreed.  When in doubt – cut it out 🙂 

              I do have several other spots they are monitoring for now.  They took pictures and retake when I go back in for check-ups. 

              Best of luck!  Positive thoughts and prayers your way!

              Erin

                • February 20, 2012 at 10:26 pm
                kwb
                Participant

                  Erin,

                  Thanks for your response and your thoughts/prayers.  Continues to be an unnerving process even after all these years.  I will see both my dermatologist and oncologist on Wednesday.  Hopefully, they can tell me why I continue to "grow these things" as my plastic surgeon says – and at such an alarming rate.  My last melanoma was Stage 2b and Clarks Level 5.  The surgical spot on my back (you can't describe it as a scar) is 8+ inches long and about 6 inches across.

                  I continue physical therapy this month and next.  However, it's good to "connect" with others.

                  thanks, again

                   

                  • February 20, 2012 at 10:26 pm
                  kwb
                  Participant

                    Erin,

                    Thanks for your response and your thoughts/prayers.  Continues to be an unnerving process even after all these years.  I will see both my dermatologist and oncologist on Wednesday.  Hopefully, they can tell me why I continue to "grow these things" as my plastic surgeon says – and at such an alarming rate.  My last melanoma was Stage 2b and Clarks Level 5.  The surgical spot on my back (you can't describe it as a scar) is 8+ inches long and about 6 inches across.

                    I continue physical therapy this month and next.  However, it's good to "connect" with others.

                    thanks, again

                     

                    • February 20, 2012 at 10:26 pm
                    kwb
                    Participant

                      Erin,

                      Thanks for your response and your thoughts/prayers.  Continues to be an unnerving process even after all these years.  I will see both my dermatologist and oncologist on Wednesday.  Hopefully, they can tell me why I continue to "grow these things" as my plastic surgeon says – and at such an alarming rate.  My last melanoma was Stage 2b and Clarks Level 5.  The surgical spot on my back (you can't describe it as a scar) is 8+ inches long and about 6 inches across.

                      I continue physical therapy this month and next.  However, it's good to "connect" with others.

                      thanks, again

                       

                    • February 20, 2012 at 6:29 pm
                    Minnesota
                    Participant

                      My friend is going through something similar, but she's had 3, and is waiting on 4 and 5 results. All have been under 1mm. She also has had multiple basal and squamous cell removed. She's 47. 

                      I had read that the familial melanoma is often the suspect in multiple primaries, and want her to get genetic testing. I also read in a study that subsequent primaries after the first are usually smaller in the inherited type, and that's what has happened with her so far. 

                      I hope someone here has some good information for you, just wanted to share about my friend, and to let you know that she's well. She's in her 6th year of constant removals every 3 months, but nothing has progressed.

                      • February 20, 2012 at 6:29 pm
                      Minnesota
                      Participant

                        My friend is going through something similar, but she's had 3, and is waiting on 4 and 5 results. All have been under 1mm. She also has had multiple basal and squamous cell removed. She's 47. 

                        I had read that the familial melanoma is often the suspect in multiple primaries, and want her to get genetic testing. I also read in a study that subsequent primaries after the first are usually smaller in the inherited type, and that's what has happened with her so far. 

                        I hope someone here has some good information for you, just wanted to share about my friend, and to let you know that she's well. She's in her 6th year of constant removals every 3 months, but nothing has progressed.

                        • February 20, 2012 at 6:29 pm
                        Minnesota
                        Participant

                          My friend is going through something similar, but she's had 3, and is waiting on 4 and 5 results. All have been under 1mm. She also has had multiple basal and squamous cell removed. She's 47. 

                          I had read that the familial melanoma is often the suspect in multiple primaries, and want her to get genetic testing. I also read in a study that subsequent primaries after the first are usually smaller in the inherited type, and that's what has happened with her so far. 

                          I hope someone here has some good information for you, just wanted to share about my friend, and to let you know that she's well. She's in her 6th year of constant removals every 3 months, but nothing has progressed.

                            • February 20, 2012 at 10:29 pm
                            kwb
                            Participant

                              Minnesota –

                              Thanks for your response and information.  I've looked at genetic testing possibilities to better understand my situation.  As I said in an earlier post, it's very unnerving that these latest occurrences have come so close together.

                              Thanks, again.  More to come…

                              • February 20, 2012 at 10:29 pm
                              kwb
                              Participant

                                Minnesota –

                                Thanks for your response and information.  I've looked at genetic testing possibilities to better understand my situation.  As I said in an earlier post, it's very unnerving that these latest occurrences have come so close together.

                                Thanks, again.  More to come…

                                • February 20, 2012 at 10:29 pm
                                kwb
                                Participant

                                  Minnesota –

                                  Thanks for your response and information.  I've looked at genetic testing possibilities to better understand my situation.  As I said in an earlier post, it's very unnerving that these latest occurrences have come so close together.

                                  Thanks, again.  More to come…

                                • February 20, 2012 at 11:10 pm
                                Janner
                                Participant

                                  Multiple primaries can be an indication of a genetic defect.  Do you have dysplastic nevus syndrome?  (Lots of atypical moles)?   People with DNS can get multiple primaries and, since they have so many moles, it can be difficult to monitor and keep on top of.  Please remember that in situ is extremely early in the game.  It is possible that those in situs would have never advanced to something deeper.  At the same time, it is very hard to have to deal with new primaries.  PET/CTs will not catch new primaries.  The resolution of the scans isn't detailed enough to really catch a primary – only something more advanced. 

                                  Have you had mole mapping done?  Whole body photography?  I find that having photos does help to take away some of the anxiety.  However it does suck knowing you are at even higher risk for more.  I have had 3 primaries and do have a genetic defect CDKN2A (p16).  I do not have dysplastic nevus syndrome.  Knowing I have this defect doesn't really help me much now.  Yes, I'm at even higher risk than most for having melanoma.  I already know that.   I really don't do anything differently in my followup care knowing that I have this defect.  So I'm not sure the real value of doing genetic testing at this point.  The key is just trying to stay on top of things.  Hopefully, things will settle down for you.  It's actually been over 10 years since my last primary – 20 years since my 1st.  I live with my fingers crossed that I won't have another, but I know it's always a possibility.

                                  Best wishes,

                                  Janner

                                  • February 20, 2012 at 11:10 pm
                                  Janner
                                  Participant

                                    Multiple primaries can be an indication of a genetic defect.  Do you have dysplastic nevus syndrome?  (Lots of atypical moles)?   People with DNS can get multiple primaries and, since they have so many moles, it can be difficult to monitor and keep on top of.  Please remember that in situ is extremely early in the game.  It is possible that those in situs would have never advanced to something deeper.  At the same time, it is very hard to have to deal with new primaries.  PET/CTs will not catch new primaries.  The resolution of the scans isn't detailed enough to really catch a primary – only something more advanced. 

                                    Have you had mole mapping done?  Whole body photography?  I find that having photos does help to take away some of the anxiety.  However it does suck knowing you are at even higher risk for more.  I have had 3 primaries and do have a genetic defect CDKN2A (p16).  I do not have dysplastic nevus syndrome.  Knowing I have this defect doesn't really help me much now.  Yes, I'm at even higher risk than most for having melanoma.  I already know that.   I really don't do anything differently in my followup care knowing that I have this defect.  So I'm not sure the real value of doing genetic testing at this point.  The key is just trying to stay on top of things.  Hopefully, things will settle down for you.  It's actually been over 10 years since my last primary – 20 years since my 1st.  I live with my fingers crossed that I won't have another, but I know it's always a possibility.

                                    Best wishes,

                                    Janner

                                      • February 26, 2012 at 9:14 pm
                                      kwb
                                      Participant

                                        No DNS according to my dermatologist.  I just have a high number of moles/blemishes that must be looked at on a regular and frequent rate.  Thanks, again, for your input and suggestions.  Still a lot to comprehend and process, both medically and emotionally.

                                        • February 26, 2012 at 9:14 pm
                                        kwb
                                        Participant

                                          No DNS according to my dermatologist.  I just have a high number of moles/blemishes that must be looked at on a regular and frequent rate.  Thanks, again, for your input and suggestions.  Still a lot to comprehend and process, both medically and emotionally.

                                          • February 26, 2012 at 9:14 pm
                                          kwb
                                          Participant

                                            No DNS according to my dermatologist.  I just have a high number of moles/blemishes that must be looked at on a regular and frequent rate.  Thanks, again, for your input and suggestions.  Still a lot to comprehend and process, both medically and emotionally.

                                          • February 20, 2012 at 11:10 pm
                                          Janner
                                          Participant

                                            Multiple primaries can be an indication of a genetic defect.  Do you have dysplastic nevus syndrome?  (Lots of atypical moles)?   People with DNS can get multiple primaries and, since they have so many moles, it can be difficult to monitor and keep on top of.  Please remember that in situ is extremely early in the game.  It is possible that those in situs would have never advanced to something deeper.  At the same time, it is very hard to have to deal with new primaries.  PET/CTs will not catch new primaries.  The resolution of the scans isn't detailed enough to really catch a primary – only something more advanced. 

                                            Have you had mole mapping done?  Whole body photography?  I find that having photos does help to take away some of the anxiety.  However it does suck knowing you are at even higher risk for more.  I have had 3 primaries and do have a genetic defect CDKN2A (p16).  I do not have dysplastic nevus syndrome.  Knowing I have this defect doesn't really help me much now.  Yes, I'm at even higher risk than most for having melanoma.  I already know that.   I really don't do anything differently in my followup care knowing that I have this defect.  So I'm not sure the real value of doing genetic testing at this point.  The key is just trying to stay on top of things.  Hopefully, things will settle down for you.  It's actually been over 10 years since my last primary – 20 years since my 1st.  I live with my fingers crossed that I won't have another, but I know it's always a possibility.

                                            Best wishes,

                                            Janner

                                            • February 22, 2012 at 2:02 pm
                                            AngelaM
                                            Participant

                                              Hi,

                                              I just wanted to say a few things regarding your post.

                                              Firstly, your new spots sound like new primary melanomas and not recurrances.

                                              Secondly, I also posted here a few months back after my third primary melanoma was dicovered, asking the question about multiple primaries (and freaking out a bit too). My history is that I had 3 primary melanomas in the space of 2 years, which is a lot. My second and third were in the same year, and each was deeper than than the previous one.I have now had another mole removed and am waiting on the results. I fully expect it to be a melanoma. I started asking my doctors a lot of questions about multiple primaries, thinking that they are so rare, based on the studies that everyone refers to. I am in South Africa by the way, where melanomas are quite common (considered by some of our doctors to be even more common than in Australia, where the rates are thought to be the highest). They all looked at me like I was crazy when I said that most people (like over 90%) only ever get 1 melanoma. They all said (derm, surgeon, onc) that they almost always see multiple primaries, but that normally a person's skin (and moles) settle and become inactive again, and that due to different immune phases in one's life, we can get melanomas for example moreso during pregnancy than at other times. The derm said that most of her melanoma patients get in the range of 3 to 6 melanomas. My onc said that one of his patients had 11 removed at the same time, and another severe case had 30 removed at the same time.

                                              So, I've resigned myself to getting more, but hopefully catching them early.

                                              I don't quite know what's true and what's not in terms of multiple primaries, but I thought I would share this.

                                              Best of luck to you

                                              • February 22, 2012 at 2:02 pm
                                              AngelaM
                                              Participant

                                                Hi,

                                                I just wanted to say a few things regarding your post.

                                                Firstly, your new spots sound like new primary melanomas and not recurrances.

                                                Secondly, I also posted here a few months back after my third primary melanoma was dicovered, asking the question about multiple primaries (and freaking out a bit too). My history is that I had 3 primary melanomas in the space of 2 years, which is a lot. My second and third were in the same year, and each was deeper than than the previous one.I have now had another mole removed and am waiting on the results. I fully expect it to be a melanoma. I started asking my doctors a lot of questions about multiple primaries, thinking that they are so rare, based on the studies that everyone refers to. I am in South Africa by the way, where melanomas are quite common (considered by some of our doctors to be even more common than in Australia, where the rates are thought to be the highest). They all looked at me like I was crazy when I said that most people (like over 90%) only ever get 1 melanoma. They all said (derm, surgeon, onc) that they almost always see multiple primaries, but that normally a person's skin (and moles) settle and become inactive again, and that due to different immune phases in one's life, we can get melanomas for example moreso during pregnancy than at other times. The derm said that most of her melanoma patients get in the range of 3 to 6 melanomas. My onc said that one of his patients had 11 removed at the same time, and another severe case had 30 removed at the same time.

                                                So, I've resigned myself to getting more, but hopefully catching them early.

                                                I don't quite know what's true and what's not in terms of multiple primaries, but I thought I would share this.

                                                Best of luck to you

                                                  • February 26, 2012 at 9:25 pm
                                                  kwb
                                                  Participant

                                                    Thanks for your response.  Yes, new spots were in situ primaries.  I had both removed and labbed on Wednesday.  All margins came back "clear."  It's funny in an ironic way that in your area of the world docs see multiple melanomas and don't bat an eye.  My new derm. said the exact opposite thing when he first saw me two weeks ago.  He usually only sees people with one, maybe two, melanomas.  I've already had 4 – including the major one on my upper right back (still recovering from that one).  And now I have two more to add to my tally.  I'm here in the States and grew up in Florida, so I just have the luck of the draw, I guess.

                                                    Thanks, again.  Sometimes it's just nice to "talk" about this stuff with others who understand.

                                                    • February 26, 2012 at 9:25 pm
                                                    kwb
                                                    Participant

                                                      Thanks for your response.  Yes, new spots were in situ primaries.  I had both removed and labbed on Wednesday.  All margins came back "clear."  It's funny in an ironic way that in your area of the world docs see multiple melanomas and don't bat an eye.  My new derm. said the exact opposite thing when he first saw me two weeks ago.  He usually only sees people with one, maybe two, melanomas.  I've already had 4 – including the major one on my upper right back (still recovering from that one).  And now I have two more to add to my tally.  I'm here in the States and grew up in Florida, so I just have the luck of the draw, I guess.

                                                      Thanks, again.  Sometimes it's just nice to "talk" about this stuff with others who understand.

                                                      • February 26, 2012 at 9:25 pm
                                                      kwb
                                                      Participant

                                                        Thanks for your response.  Yes, new spots were in situ primaries.  I had both removed and labbed on Wednesday.  All margins came back "clear."  It's funny in an ironic way that in your area of the world docs see multiple melanomas and don't bat an eye.  My new derm. said the exact opposite thing when he first saw me two weeks ago.  He usually only sees people with one, maybe two, melanomas.  I've already had 4 – including the major one on my upper right back (still recovering from that one).  And now I have two more to add to my tally.  I'm here in the States and grew up in Florida, so I just have the luck of the draw, I guess.

                                                        Thanks, again.  Sometimes it's just nice to "talk" about this stuff with others who understand.

                                                      • February 22, 2012 at 2:02 pm
                                                      AngelaM
                                                      Participant

                                                        Hi,

                                                        I just wanted to say a few things regarding your post.

                                                        Firstly, your new spots sound like new primary melanomas and not recurrances.

                                                        Secondly, I also posted here a few months back after my third primary melanoma was dicovered, asking the question about multiple primaries (and freaking out a bit too). My history is that I had 3 primary melanomas in the space of 2 years, which is a lot. My second and third were in the same year, and each was deeper than than the previous one.I have now had another mole removed and am waiting on the results. I fully expect it to be a melanoma. I started asking my doctors a lot of questions about multiple primaries, thinking that they are so rare, based on the studies that everyone refers to. I am in South Africa by the way, where melanomas are quite common (considered by some of our doctors to be even more common than in Australia, where the rates are thought to be the highest). They all looked at me like I was crazy when I said that most people (like over 90%) only ever get 1 melanoma. They all said (derm, surgeon, onc) that they almost always see multiple primaries, but that normally a person's skin (and moles) settle and become inactive again, and that due to different immune phases in one's life, we can get melanomas for example moreso during pregnancy than at other times. The derm said that most of her melanoma patients get in the range of 3 to 6 melanomas. My onc said that one of his patients had 11 removed at the same time, and another severe case had 30 removed at the same time.

                                                        So, I've resigned myself to getting more, but hopefully catching them early.

                                                        I don't quite know what's true and what's not in terms of multiple primaries, but I thought I would share this.

                                                        Best of luck to you

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