The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Marking correct choice?

Forums Cutaneous Melanoma Community Marking correct choice?

  • Post
    kbrenner
    Participant

      Hi all,

      Hi all,

      I was diagnosed with melanoma just under 2 weeks ago.  My dermatologist has had melanoma herself twice and assured me I'd be alright.  I had a mole removed from my scalp that was .3 centameters and she got me immediately in to see a plastic surgeon who they say is excellant.  Heard nothing but good things about him.  I know this is something I can not mess around with and need to get taken care of ASAP.  So I'm all set for surgery on Sept 10th.  They will be taking a skin graft from my leg for it.  Of course shaving the area on my head, I've always had very long hair so that's a change in itself, but the least of my concerns.  My concern now is am I making the correct choice, or should I be trying to go to the MD Anderson Center?  My Dr. mentioned the Moffit center in Tampa (I live the on the east coast of FL)  But she did not think it was necessary.  I've been reading some of the postings and it sounds like the MD Anderson Center is the place to go and I checked my Insurance and they are a prefered provider.  I do hate to delay, so I'm thinking I should go ahead with the surgery and if needed later follow up with MD Anderson, but I really don't know what to do.  My Derm. has been really supportive and since she's been through this before I feel good about what she tells me and try to stay positive.  However there are still  times I'm afraid it's going to end up being much worse and am worried I'm not going to be around to watch my beautiful little granddaughter grow up.

      Kari

    Viewing 23 reply threads
    • Replies
        JC
        Participant

          Is this Stage I, less than 1 mm?  If so, I don't even think you would go to any oncologist at MD Anderson or Moffitt. . you'd just need a derm or a surgeon to do a wide local excision surgery, and follow up with skin exams, etc…. 

          JC
          Participant

            Is this Stage I, less than 1 mm?  If so, I don't even think you would go to any oncologist at MD Anderson or Moffitt. . you'd just need a derm or a surgeon to do a wide local excision surgery, and follow up with skin exams, etc…. 

              kbrenner
              Participant

                I was told that it was .3cm and that I do not need to go to an oncologist.  They said just the surgery and follow every 3 months with full body check.  I had my first full body check and they found another spot on my foot that they are concerned about and will remove and check after my surgery.  It is a very small spot and am not too concerned about it.  Just have a bad feeling and have been researching and found on the MD Anderson site the information on the different types on melanoma and that mucosal is usually found on the head and that even with early detection the outcome is often poor.  I am planning to call my Dr. on monday to get more information on the type it is.  She did asure me that I would be fine, but I'm not going to mess around with my life, and trying to get all the info. I can on the subject and talk to everyone I can.  Thank you for your reponse, it does nake me feel better and think that maybe I am over reacting, but better safe then sorry.

                kbrenner
                Participant

                  I was told that it was .3cm and that I do not need to go to an oncologist.  They said just the surgery and follow every 3 months with full body check.  I had my first full body check and they found another spot on my foot that they are concerned about and will remove and check after my surgery.  It is a very small spot and am not too concerned about it.  Just have a bad feeling and have been researching and found on the MD Anderson site the information on the different types on melanoma and that mucosal is usually found on the head and that even with early detection the outcome is often poor.  I am planning to call my Dr. on monday to get more information on the type it is.  She did asure me that I would be fine, but I'm not going to mess around with my life, and trying to get all the info. I can on the subject and talk to everyone I can.  Thank you for your reponse, it does nake me feel better and think that maybe I am over reacting, but better safe then sorry.

                  kbrenner
                  Participant

                    I was told that it was .3cm and that I do not need to go to an oncologist.  They said just the surgery and follow every 3 months with full body check.  I had my first full body check and they found another spot on my foot that they are concerned about and will remove and check after my surgery.  It is a very small spot and am not too concerned about it.  Just have a bad feeling and have been researching and found on the MD Anderson site the information on the different types on melanoma and that mucosal is usually found on the head and that even with early detection the outcome is often poor.  I am planning to call my Dr. on monday to get more information on the type it is.  She did asure me that I would be fine, but I'm not going to mess around with my life, and trying to get all the info. I can on the subject and talk to everyone I can.  Thank you for your reponse, it does nake me feel better and think that maybe I am over reacting, but better safe then sorry.

                  JC
                  Participant

                    Is this Stage I, less than 1 mm?  If so, I don't even think you would go to any oncologist at MD Anderson or Moffitt. . you'd just need a derm or a surgeon to do a wide local excision surgery, and follow up with skin exams, etc…. 

                    JC
                    Participant

                      If on your scalp, more like superficial spreading.  Mucosal is like inside nose, mouth, etc….

                      JC
                      Participant

                        If on your scalp, more like superficial spreading.  Mucosal is like inside nose, mouth, etc….

                        JC
                        Participant

                          If on your scalp, more like superficial spreading.  Mucosal is like inside nose, mouth, etc….

                          lrkg1234
                          Participant

                            I'm new to this board because my husband was just diagnosed with mucosal melanoma stage IV.  We have only been involved the the dreadful disease for a few weeks now, so I'm not the expert.  I learn a lot here though. 

                             I would go to the best place possible. Moffit in Tampa seems like a fairly easy place to get to for you.  You wouldn't have to go there that often.  It's so lucky that you caught it now. 

                            My grandpa (in the 80's) had a melanoma spot that started on his head and by the time they caught it was already across his chest and down his neck.  They got it all out and he lived 15+ more years only dying of old age.   I'd want to keep a close check on it just to be safe.

                            Better to go a bit out of your way and maybe even be a bit paranoid.  This stuff is nastier than I ever knew and nothing to mess around with. 

                            Best of Luck, Lisa

                            lrkg1234
                            Participant

                              I'm new to this board because my husband was just diagnosed with mucosal melanoma stage IV.  We have only been involved the the dreadful disease for a few weeks now, so I'm not the expert.  I learn a lot here though. 

                               I would go to the best place possible. Moffit in Tampa seems like a fairly easy place to get to for you.  You wouldn't have to go there that often.  It's so lucky that you caught it now. 

                              My grandpa (in the 80's) had a melanoma spot that started on his head and by the time they caught it was already across his chest and down his neck.  They got it all out and he lived 15+ more years only dying of old age.   I'd want to keep a close check on it just to be safe.

                              Better to go a bit out of your way and maybe even be a bit paranoid.  This stuff is nastier than I ever knew and nothing to mess around with. 

                              Best of Luck, Lisa

                                NYKaren
                                Participant
                                  Hi Kari,
                                  Do you have more info from your biopsy?
                                  My Mel started on my scalp, but by the time I looked in the mirror and saw that it was much more than a pimple, it was more advanced than yours. If I knew then what I know now, I would have run straight to Sloan Kettering. It’s great that you found yours so much earlier.
                                  I suggest u post here everything from your biopsy, and perhaps someone like Janner can help you interpret and make your decision.
                                  Please let us know what happens.
                                  Karen
                                  NYKaren
                                  Participant
                                    Hi Kari,
                                    Do you have more info from your biopsy?
                                    My Mel started on my scalp, but by the time I looked in the mirror and saw that it was much more than a pimple, it was more advanced than yours. If I knew then what I know now, I would have run straight to Sloan Kettering. It’s great that you found yours so much earlier.
                                    I suggest u post here everything from your biopsy, and perhaps someone like Janner can help you interpret and make your decision.
                                    Please let us know what happens.
                                    Karen
                                    NYKaren
                                    Participant
                                      Hi Kari,
                                      Do you have more info from your biopsy?
                                      My Mel started on my scalp, but by the time I looked in the mirror and saw that it was much more than a pimple, it was more advanced than yours. If I knew then what I know now, I would have run straight to Sloan Kettering. It’s great that you found yours so much earlier.
                                      I suggest u post here everything from your biopsy, and perhaps someone like Janner can help you interpret and make your decision.
                                      Please let us know what happens.
                                      Karen
                                    lrkg1234
                                    Participant

                                      I'm new to this board because my husband was just diagnosed with mucosal melanoma stage IV.  We have only been involved the the dreadful disease for a few weeks now, so I'm not the expert.  I learn a lot here though. 

                                       I would go to the best place possible. Moffit in Tampa seems like a fairly easy place to get to for you.  You wouldn't have to go there that often.  It's so lucky that you caught it now. 

                                      My grandpa (in the 80's) had a melanoma spot that started on his head and by the time they caught it was already across his chest and down his neck.  They got it all out and he lived 15+ more years only dying of old age.   I'd want to keep a close check on it just to be safe.

                                      Better to go a bit out of your way and maybe even be a bit paranoid.  This stuff is nastier than I ever knew and nothing to mess around with. 

                                      Best of Luck, Lisa

                                      Janner
                                      Participant

                                        First, you need to get a copy of your pathology report.  Depth measurements are RARELY given in centimeters.  They are almost always written in millimeters.  So if your lesion is .3mm (not .3cm which is 3mm), then this would be considered a low risk lesion.  And since no one is suggesting you have a sentinel node biopsy, I'm pretty sure that this is .3mm.  Sentinel node biopsies are suggested for lesions over 1mm.  Lesions under 1mm usually have surgery only and periodic body checks.  So given how you've described the followup, I'm inferring .3mm is the likely depth. Probably not any real reason to be running to MDA for a low risk lesion.  If you have a good plastic surgeon, that is the way to go.  It's unlikely that MDA would do anything differently.  This is not mucosal melanoma which is found inside nasal cavity or mouth or vagina/anus.  It's found on the outside of the scalp which is cutaneous melanoma.  If you were fighting metastatic disease, then you want to go to a large institution that has clinical trials and treatment options.  An early stage I lesion isn't in that same category, however, and can typically be handled locally.

                                        Best wishes,

                                        Janner

                                        Janner
                                        Participant

                                          First, you need to get a copy of your pathology report.  Depth measurements are RARELY given in centimeters.  They are almost always written in millimeters.  So if your lesion is .3mm (not .3cm which is 3mm), then this would be considered a low risk lesion.  And since no one is suggesting you have a sentinel node biopsy, I'm pretty sure that this is .3mm.  Sentinel node biopsies are suggested for lesions over 1mm.  Lesions under 1mm usually have surgery only and periodic body checks.  So given how you've described the followup, I'm inferring .3mm is the likely depth. Probably not any real reason to be running to MDA for a low risk lesion.  If you have a good plastic surgeon, that is the way to go.  It's unlikely that MDA would do anything differently.  This is not mucosal melanoma which is found inside nasal cavity or mouth or vagina/anus.  It's found on the outside of the scalp which is cutaneous melanoma.  If you were fighting metastatic disease, then you want to go to a large institution that has clinical trials and treatment options.  An early stage I lesion isn't in that same category, however, and can typically be handled locally.

                                          Best wishes,

                                          Janner

                                          Janner
                                          Participant

                                            First, you need to get a copy of your pathology report.  Depth measurements are RARELY given in centimeters.  They are almost always written in millimeters.  So if your lesion is .3mm (not .3cm which is 3mm), then this would be considered a low risk lesion.  And since no one is suggesting you have a sentinel node biopsy, I'm pretty sure that this is .3mm.  Sentinel node biopsies are suggested for lesions over 1mm.  Lesions under 1mm usually have surgery only and periodic body checks.  So given how you've described the followup, I'm inferring .3mm is the likely depth. Probably not any real reason to be running to MDA for a low risk lesion.  If you have a good plastic surgeon, that is the way to go.  It's unlikely that MDA would do anything differently.  This is not mucosal melanoma which is found inside nasal cavity or mouth or vagina/anus.  It's found on the outside of the scalp which is cutaneous melanoma.  If you were fighting metastatic disease, then you want to go to a large institution that has clinical trials and treatment options.  An early stage I lesion isn't in that same category, however, and can typically be handled locally.

                                            Best wishes,

                                            Janner

                                              NYKaren
                                              Participant
                                                Janner,
                                                How funny…I posted at the same time u did and I was referring to you.
                                                ๐Ÿ™‚ karen
                                                JC
                                                Participant

                                                  Janner said for a low risk lesion like this, probably don't need to travel (to MD Anderson), etc… but Karen is saying she'd run to Sloan Kettering?  Which is correct?

                                                  JC
                                                  Participant

                                                    Janner said for a low risk lesion like this, probably don't need to travel (to MD Anderson), etc… but Karen is saying she'd run to Sloan Kettering?  Which is correct?

                                                    NYKaren
                                                    Participant
                                                      I said that for ME I should have run to Sloan, had I been lucky enough to catch mine as early.
                                                      I agree with Janner’s advice. Did not mean to imply otherwise.

                                                      I don’t know how I could have been so stupid as I was… Picking at a little pimple on my scalp for months before finally looking in the mirror.
                                                      I know we’re not supposed to look back, but I kick myself in the ass for being so damn stupid.

                                                      JC
                                                      Participant

                                                        If it makes you feel any better, from what I've read melanoma develops/grows . .can be 1-5 years. . so I don't know months one way or the other has a huge impact always.

                                                        JC
                                                        Participant

                                                          If it makes you feel any better, from what I've read melanoma develops/grows . .can be 1-5 years. . so I don't know months one way or the other has a huge impact always.

                                                          kbrenner
                                                          Participant

                                                            Thank you all for responding.  And thank you Janner for suggesting the pathology report, I forgot I asked for it for my insurance, but had not read it yet was just going by what the Dr. had told me.  I did first notice this appear approximately 5 years ago and was always going to go to a dermatologist to get a full body check having heard that should be done yearly but never did.  Of course now I wish I would of.  I was in having my yearly physical with my primary Dr. and the girl that took my blood pressure saw it and said I needed to talk to the Dr. about it, which I of course did. 

                                                            The biopsy was .5X.3 cm and it does say Malignant melanova, peripheral margins postive for turnor, .3mm. Clarks's level II, Ulceration: absent Mitoses: less then one per square millimeter, Pathologic stage: T1a. 

                                                            There is a long description but part of it says the tumor appears to be poorly circumscribed, but it extends to the peripheral margin and thus, this neoplasm demonstrates unusual features, I believe it is best categorized as a thin melanoma, rather than an unusaual nevus. 

                                                            So from what I've been reading, I'm hoping I caught this in time and that I should proceed with the surgery I have scheduled.  I certainly don't want to put this off any longer.  But I still would like to hear what everyone thinks about this.  I believe the best information I can get is from the people that have actually dealt with this themselfs or the loved ones of those who have gone through it.

                                                            Thank you again for responding and I will be looking for any other information I can find.  I have my post op appt with the plastic surgeon Tues., and have a list of questions.  Any suggestions on things to ask would be appreciated.  Or if there is anything else I should be asking my derm.  My surgery is scheduled for Sept 10th, so of course there is still time to go elsewhere if I decide to, but I'm thinking I need to get this done ASAP/

                                                             

                                                             

                                                            kbrenner
                                                            Participant

                                                              Thank you all for responding.  And thank you Janner for suggesting the pathology report, I forgot I asked for it for my insurance, but had not read it yet was just going by what the Dr. had told me.  I did first notice this appear approximately 5 years ago and was always going to go to a dermatologist to get a full body check having heard that should be done yearly but never did.  Of course now I wish I would of.  I was in having my yearly physical with my primary Dr. and the girl that took my blood pressure saw it and said I needed to talk to the Dr. about it, which I of course did. 

                                                              The biopsy was .5X.3 cm and it does say Malignant melanova, peripheral margins postive for turnor, .3mm. Clarks's level II, Ulceration: absent Mitoses: less then one per square millimeter, Pathologic stage: T1a. 

                                                              There is a long description but part of it says the tumor appears to be poorly circumscribed, but it extends to the peripheral margin and thus, this neoplasm demonstrates unusual features, I believe it is best categorized as a thin melanoma, rather than an unusaual nevus. 

                                                              So from what I've been reading, I'm hoping I caught this in time and that I should proceed with the surgery I have scheduled.  I certainly don't want to put this off any longer.  But I still would like to hear what everyone thinks about this.  I believe the best information I can get is from the people that have actually dealt with this themselfs or the loved ones of those who have gone through it.

                                                              Thank you again for responding and I will be looking for any other information I can find.  I have my post op appt with the plastic surgeon Tues., and have a list of questions.  Any suggestions on things to ask would be appreciated.  Or if there is anything else I should be asking my derm.  My surgery is scheduled for Sept 10th, so of course there is still time to go elsewhere if I decide to, but I'm thinking I need to get this done ASAP/

                                                               

                                                               

                                                              Janner
                                                              Participant

                                                                This is an extremely low risk lesion.  Stage 1A has a very high survival rate.  If this were me, I would proceed as you already have scheduled.  Get the WLE from the plastic surgeon and proceed from there with regular visual body screenings looking for any other moles that CHANGE.  Certainly, you can go elsewhere, but at this point there is nothing a large institution can offer you that differs from what you already have scheduled.  It's rare that a stage IA warrior would see an oncologist – just the surgery then regular derm visits from now on.  You caught this early, your risk is very low.  Not zero, but low.  The key is to pay attention to your body, to the area where this is removed, and to the lymph node basins in your neck.  These nodes swell more than any other area because of simple infections, but I would ask your doctor the best way to palpate the area.  From now on, do a monthly skin check and lymph node check.  Just make it part of a routine.  Your risk for a second melanoma primary is actually higher than your risk for a recurrence from this melanoma.  Even so, the second primary risk runs about 8% for the melanoma population.

                                                                Best wishes,

                                                                Janner

                                                                Stage IB since 1992, 3 MM primaries

                                                                Janner
                                                                Participant

                                                                  This is an extremely low risk lesion.  Stage 1A has a very high survival rate.  If this were me, I would proceed as you already have scheduled.  Get the WLE from the plastic surgeon and proceed from there with regular visual body screenings looking for any other moles that CHANGE.  Certainly, you can go elsewhere, but at this point there is nothing a large institution can offer you that differs from what you already have scheduled.  It's rare that a stage IA warrior would see an oncologist – just the surgery then regular derm visits from now on.  You caught this early, your risk is very low.  Not zero, but low.  The key is to pay attention to your body, to the area where this is removed, and to the lymph node basins in your neck.  These nodes swell more than any other area because of simple infections, but I would ask your doctor the best way to palpate the area.  From now on, do a monthly skin check and lymph node check.  Just make it part of a routine.  Your risk for a second melanoma primary is actually higher than your risk for a recurrence from this melanoma.  Even so, the second primary risk runs about 8% for the melanoma population.

                                                                  Best wishes,

                                                                  Janner

                                                                  Stage IB since 1992, 3 MM primaries

                                                                  Janner
                                                                  Participant

                                                                    This is an extremely low risk lesion.  Stage 1A has a very high survival rate.  If this were me, I would proceed as you already have scheduled.  Get the WLE from the plastic surgeon and proceed from there with regular visual body screenings looking for any other moles that CHANGE.  Certainly, you can go elsewhere, but at this point there is nothing a large institution can offer you that differs from what you already have scheduled.  It's rare that a stage IA warrior would see an oncologist – just the surgery then regular derm visits from now on.  You caught this early, your risk is very low.  Not zero, but low.  The key is to pay attention to your body, to the area where this is removed, and to the lymph node basins in your neck.  These nodes swell more than any other area because of simple infections, but I would ask your doctor the best way to palpate the area.  From now on, do a monthly skin check and lymph node check.  Just make it part of a routine.  Your risk for a second melanoma primary is actually higher than your risk for a recurrence from this melanoma.  Even so, the second primary risk runs about 8% for the melanoma population.

                                                                    Best wishes,

                                                                    Janner

                                                                    Stage IB since 1992, 3 MM primaries

                                                                    kbrenner
                                                                    Participant

                                                                      Thank you all for responding.  And thank you Janner for suggesting the pathology report, I forgot I asked for it for my insurance, but had not read it yet was just going by what the Dr. had told me.  I did first notice this appear approximately 5 years ago and was always going to go to a dermatologist to get a full body check having heard that should be done yearly but never did.  Of course now I wish I would of.  I was in having my yearly physical with my primary Dr. and the girl that took my blood pressure saw it and said I needed to talk to the Dr. about it, which I of course did. 

                                                                      The biopsy was .5X.3 cm and it does say Malignant melanova, peripheral margins postive for turnor, .3mm. Clarks's level II, Ulceration: absent Mitoses: less then one per square millimeter, Pathologic stage: T1a. 

                                                                      There is a long description but part of it says the tumor appears to be poorly circumscribed, but it extends to the peripheral margin and thus, this neoplasm demonstrates unusual features, I believe it is best categorized as a thin melanoma, rather than an unusaual nevus. 

                                                                      So from what I've been reading, I'm hoping I caught this in time and that I should proceed with the surgery I have scheduled.  I certainly don't want to put this off any longer.  But I still would like to hear what everyone thinks about this.  I believe the best information I can get is from the people that have actually dealt with this themselfs or the loved ones of those who have gone through it.

                                                                      Thank you again for responding and I will be looking for any other information I can find.  I have my post op appt with the plastic surgeon Tues., and have a list of questions.  Any suggestions on things to ask would be appreciated.  Or if there is anything else I should be asking my derm.  My surgery is scheduled for Sept 10th, so of course there is still time to go elsewhere if I decide to, but I'm thinking I need to get this done ASAP/

                                                                       

                                                                       

                                                                      JC
                                                                      Participant

                                                                        If it makes you feel any better, from what I've read melanoma develops/grows . .can be 1-5 years. . so I don't know months one way or the other has a huge impact always.

                                                                        NYKaren
                                                                        Participant
                                                                          I said that for ME I should have run to Sloan, had I been lucky enough to catch mine as early.
                                                                          I agree with Janner’s advice. Did not mean to imply otherwise.

                                                                          I don’t know how I could have been so stupid as I was… Picking at a little pimple on my scalp for months before finally looking in the mirror.
                                                                          I know we’re not supposed to look back, but I kick myself in the ass for being so damn stupid.

                                                                          NYKaren
                                                                          Participant
                                                                            I said that for ME I should have run to Sloan, had I been lucky enough to catch mine as early.
                                                                            I agree with Janner’s advice. Did not mean to imply otherwise.

                                                                            I don’t know how I could have been so stupid as I was… Picking at a little pimple on my scalp for months before finally looking in the mirror.
                                                                            I know we’re not supposed to look back, but I kick myself in the ass for being so damn stupid.

                                                                            JC
                                                                            Participant

                                                                              Janner said for a low risk lesion like this, probably don't need to travel (to MD Anderson), etc… but Karen is saying she'd run to Sloan Kettering?  Which is correct?

                                                                              NYKaren
                                                                              Participant
                                                                                Janner,
                                                                                How funny…I posted at the same time u did and I was referring to you.
                                                                                ๐Ÿ™‚ karen
                                                                                NYKaren
                                                                                Participant
                                                                                  Janner,
                                                                                  How funny…I posted at the same time u did and I was referring to you.
                                                                                  ๐Ÿ™‚ karen
                                                                                  herbert
                                                                                  Participant

                                                                                    i have a similar question… had what was  rhought to be in situ 5 yrs ago… just had a recurrance about 2cm from there..( on scalp). re-examining  the in situ  now they found a small invasive component…0.3mm… no mitosis, no ulceration…was removed with wle with clear margins… just recently diagnosed with another melanoma….0.7mm… again no mitosis or ulceration… had two expert dermopathlogists look at it carefully… removed with wle… clear margins… they deemed it to be very “non-aggressive”… recommendation was to do the wle, plus some additional punch biopsy’s just to make sure no other cells were in the tissue nearby)…does this sound like the right decision on treatment?…had a surgical oncologist recommend an excision around both sites of 5mmx6mm to clear the area…all the other doctors thought this was overly conservative…

                                                                                    they are recommending checkups every three months and no further treatment…. does this sound right for what appears to be recurrent  t1a?… or shoukd i also consider visting mda or sloan?

                                                                                    thanks, herbert

                                                                                     

                                                                                     

                                                                                     

                                                                                     

                                                                                     

                                                                                     

                                                                                     

                                                                                  LynnLuc
                                                                                  Participant

                                                                                    Knowing what I know now..I would go to Moffitt and get a second opinion. I go to Moffit and I am stage 4 and NED.

                                                                                    LynnLuc
                                                                                    Participant

                                                                                      Knowing what I know now..I would go to Moffitt and get a second opinion. I go to Moffit and I am stage 4 and NED.

                                                                                      LynnLuc
                                                                                      Participant

                                                                                        Knowing what I know now..I would go to Moffitt and get a second opinion. I go to Moffit and I am stage 4 and NED.

                                                                                        JerryfromFauq
                                                                                        Participant

                                                                                          I suspect that there is a misunderstanding as to which type  of melanoma this is.  Someone has made a statment that is not likely.  Mucosal melanoma occurrs on mucosal type skin surfaces.  However the problem is that Mucosal melanoma may also be a C-kit melanoma.  Acral Lentigimous Melanoma (ALM) can occure on the head and soles of the feet (and other locations.  ALM can also be a c-kit  melanoma.  The treatment for c-kit melanoma will likely be the same regardless of which of the c-kit melanoma's one has.  Other melanomas may also have the c-kit onco-protein and DNA mutation, but are less likely to than the Mucosal and ALM.  I have mucosal melanoma and went to stage IV in 2007, shortly after my local general surgeon found I had melanoma in 2006 (after 3 1/2 years of being mis-diagnosed locally), but he delayed folow-up through his lack of knowledge about melanoma.

                                                                                            The Pathology report should state Mucosal melanoma, Acral Lentigimous melanoma, etc.  The Pathology report will not tell if the tumor material is positive for C-kit, BRAF nor any of the other onco-proteiins or DNA mutatiions.  Seperate tests are required to obtain this info.

                                                                                             Be sure the tumor material is saved to be available for thes other tests to help detemin posible future treatment if your melanoma reoccrs.  (Hopefully the second spot is  not melanoma.)  Personally I would go to either Moffit or MD /Anderson in Orlando if I was back hoome in Florida.  I have learned that very few dermatologists or general Oncologists can keep up with the currently fast changing field of Melanoma research.  (Hard for even a Melanoma specialist to keep up.) 

                                                                                             I do worry about the confusion as to the depth and name provided here for your melanoma.  As Janner has pointed out there is a large difference in staging and likehood of spread between a .3 mm depth of tumor and a .3 cm (3 mm) tumor.  Since you are talking about skin graft, is there a chance that diameter rather than depth is being referred to by the .3 cm?

                                                                                              I can understand going ahead with the current schedule for removal of the tumor margins (WLE) wide local excession.  In would then request a follow up with the melanoma specialists at Moffit.

                                                                                            kbrenner
                                                                                            Participant

                                                                                              You are correct it is the diameter that they are referring to by the .3cm.  The pathology report does say Breslow Thickness 0.3 mm.  It also says Malignant Melanoma, Peripheral, Margins positive for tumer. 

                                                                                              I was reading something on the MD Anderson site that was listed the Melanoma Types and it said that Mucosal Melanoma's most common sites are head and neck region and that got me worried.  After reading what everyone has to say I feel much better about it.  I will go ahead with the surgery and am already scheduled to go back to the Derm. at the beginning of Nov. for another body check. 

                                                                                              Thank you for the suggestion of having the tumor saved for other tests.  I will also check on getting it tested or following up with Moffit or MD/Aderson.   Thank you and Janner and everyone else who has responded.  I really appreciate it.  Of to work for me now.

                                                                                              JC
                                                                                              Participant

                                                                                                Such an early, thin melanoma that won't require any treatment after surgery, I don't know that they or your insurance would go for testing it for which mutations it might have.  Whether it's BRAF + or – at this stage doesn't really matter.  And, if you were to get another primary later more advanced, they'd have to test that one anyway, wouldn't necessarily be the same as this one.  So, I don't know there is any value in testing this early/thin lesion for which mutations it might have, since you won't be getting any adjuvant therapy anyway after surgery.

                                                                                                kbrenner
                                                                                                Participant

                                                                                                  Thanks for your imput.  This is so new to me and still researching everything.  Am going for my pre-op visit in the morning and will discuss this more with them.  Am going to make a list of questions tonight so I don't forget what I want to ask.  The more I find out and discuss with people the better I feel about it!

                                                                                                  kbrenner
                                                                                                  Participant

                                                                                                    Thanks for your imput.  This is so new to me and still researching everything.  Am going for my pre-op visit in the morning and will discuss this more with them.  Am going to make a list of questions tonight so I don't forget what I want to ask.  The more I find out and discuss with people the better I feel about it!

                                                                                                    kbrenner
                                                                                                    Participant

                                                                                                      Thanks for your imput.  This is so new to me and still researching everything.  Am going for my pre-op visit in the morning and will discuss this more with them.  Am going to make a list of questions tonight so I don't forget what I want to ask.  The more I find out and discuss with people the better I feel about it!

                                                                                                      JerryfromFauq
                                                                                                      Participant

                                                                                                        The testing will not make any difference in the immediate actions.  The the initial test for C-kit onco-protein can be done at any lab and should only cost about $150.00.   To me, the main advantage in knowing at least the onco-protein involved narrows the areas to have in ones mind as to what to do later if there is any further re-occurrences.  I like to have looked at possible paths to follow before the last minute.   At the time f my diagnosis (2006) It really made no difference in knowing what onco-proteins and DNA mutations were involved.  They were treated the same.  Since then they have proved that Melanoma is not just one cancer (but like many cancers), may actually be many different varieties of a cancer with treatment depending upon the onco-protein and DNA mutation involved.  It can take up to three months to get some of the tests successful completed and especially to determine which of the possible DNA mutations a particular person has.  Knowing this information reduces the waiting time to start the best treatment for ones particular type of melanoma mutation,

                                                                                                        JerryfromFauq
                                                                                                        Participant

                                                                                                          The testing will not make any difference in the immediate actions.  The the initial test for C-kit onco-protein can be done at any lab and should only cost about $150.00.   To me, the main advantage in knowing at least the onco-protein involved narrows the areas to have in ones mind as to what to do later if there is any further re-occurrences.  I like to have looked at possible paths to follow before the last minute.   At the time f my diagnosis (2006) It really made no difference in knowing what onco-proteins and DNA mutations were involved.  They were treated the same.  Since then they have proved that Melanoma is not just one cancer (but like many cancers), may actually be many different varieties of a cancer with treatment depending upon the onco-protein and DNA mutation involved.  It can take up to three months to get some of the tests successful completed and especially to determine which of the possible DNA mutations a particular person has.  Knowing this information reduces the waiting time to start the best treatment for ones particular type of melanoma mutation,

                                                                                                          JerryfromFauq
                                                                                                          Participant

                                                                                                            The testing will not make any difference in the immediate actions.  The the initial test for C-kit onco-protein can be done at any lab and should only cost about $150.00.   To me, the main advantage in knowing at least the onco-protein involved narrows the areas to have in ones mind as to what to do later if there is any further re-occurrences.  I like to have looked at possible paths to follow before the last minute.   At the time f my diagnosis (2006) It really made no difference in knowing what onco-proteins and DNA mutations were involved.  They were treated the same.  Since then they have proved that Melanoma is not just one cancer (but like many cancers), may actually be many different varieties of a cancer with treatment depending upon the onco-protein and DNA mutation involved.  It can take up to three months to get some of the tests successful completed and especially to determine which of the possible DNA mutations a particular person has.  Knowing this information reduces the waiting time to start the best treatment for ones particular type of melanoma mutation,

                                                                                                            JC
                                                                                                            Participant

                                                                                                              For a recur of the same initial melanoma, this may be useful.  But a new primary would not necessarily be the same mutation as the prior melanoma.

                                                                                                              JC
                                                                                                              Participant

                                                                                                                For a recur of the same initial melanoma, this may be useful.  But a new primary would not necessarily be the same mutation as the prior melanoma.

                                                                                                                JC
                                                                                                                Participant

                                                                                                                  For a recur of the same initial melanoma, this may be useful.  But a new primary would not necessarily be the same mutation as the prior melanoma.

                                                                                                                  JerryfromFauq
                                                                                                                  Participant

                                                                                                                    PS, A new primary "might" have a different mutation.  Any metastases from the current tumor is not likely to drop the type of mutation and pick up a new mutation.  Have not read of this change happening in any metastises.

                                                                                                                    JC
                                                                                                                    Participant

                                                                                                                      3 months – that's crazy, it even takes that long if you're at a center of excellence?

                                                                                                                      JC
                                                                                                                      Participant

                                                                                                                        3 months – that's crazy, it even takes that long if you're at a center of excellence?

                                                                                                                        JC
                                                                                                                        Participant

                                                                                                                          3 months – that's crazy, it even takes that long if you're at a center of excellence?

                                                                                                                          JerryfromFauq
                                                                                                                          Participant

                                                                                                                            PS, A new primary "might" have a different mutation.  Any metastases from the current tumor is not likely to drop the type of mutation and pick up a new mutation.  Have not read of this change happening in any metastises.

                                                                                                                            JerryfromFauq
                                                                                                                            Participant

                                                                                                                              PS, A new primary "might" have a different mutation.  Any metastases from the current tumor is not likely to drop the type of mutation and pick up a new mutation.  Have not read of this change happening in any metastises.

                                                                                                                              Janner
                                                                                                                              Participant

                                                                                                                                Jerry, why are you recommending a C-Kit test for a cutaneous melanoma that is .3mm (stage IA)?  I don't get it.  This lesion has about a 98% survival rate.  It's not mucosal.  There is no reason to check for BRAF or anything else at this point.  I'm sorry, but I'm a bit baffled.  This lesion should be excised and the OP move on with life.  IF, and that's a big IF, there is a recurrence (extremely unlikely) – you go from there.  Tests taken today are unlikely to be relative later as this field is changing fast.  Am I missing something here?  No doctor will recommend or insurance company will pay for that testing at this stage and I, personally, I think it is just confusing a newly diagnosed person with an excellent prognosis to suggest anything for "future treatment" at this point.

                                                                                                                                Just my thoughts,

                                                                                                                                Janner

                                                                                                                                JerryfromFauq
                                                                                                                                Participant

                                                                                                                                  Janner I am refering back to Kari's post where she said

                                                                                                                                  Re: Marking correct choice?

                                                                                                                                  kbrenner

                                                                                                                                  "Just have a bad feeling and have been researching and found on the MD Anderson site the information on the different types on melanoma and that mucosal is usually found on the head and that even with early detection the outcome is often poor."  —-

                                                                                                                                  While we know that it is not common to fiind mucosal melanoma on ones head or any outside skin surface, It is very possible to find c-kit melanomas on ones head.  Did you see anything in the pathology report that would rule out hers being in that category? 

                                                                                                                                    I agree that the statistics for her to have a great future are very good.  If she is worried about hers being a c-kit melanoma then the onco-protein test might help ease her mind.  The other thing is that I was told in Oct 2006 that "We got it all, there is nothing to worry about."  By Feb 2007 I was stage IV.  I have talked  with many Stage I people (I refer them to my favorite stage I adviser, (YOU)    I am asked by many low stage peoiple that are extremely scared as to what they can look at to be ready if something else goes wrong.  If Kari is worried that hers might be an aggressive c-kit tumor, the local lab onco-protein test can either say it is or isn't. 

                                                                                                                                     As you also know, I don't advocate surrendering to a melanoma death fear even if ones melenoma is C-kit, mucosal, aggresive, not NED, etc.

                                                                                                                                  P.S. Kari, we have family in Titusvile, hope you like the area.  I didn't mean to scare you, just to give information that can let you knkow more about what is going on with this disease.

                                                                                                                                  JerryfromFauq
                                                                                                                                  Participant

                                                                                                                                    Janner I am refering back to Kari's post where she said

                                                                                                                                    Re: Marking correct choice?

                                                                                                                                    kbrenner

                                                                                                                                    "Just have a bad feeling and have been researching and found on the MD Anderson site the information on the different types on melanoma and that mucosal is usually found on the head and that even with early detection the outcome is often poor."  —-

                                                                                                                                    While we know that it is not common to fiind mucosal melanoma on ones head or any outside skin surface, It is very possible to find c-kit melanomas on ones head.  Did you see anything in the pathology report that would rule out hers being in that category? 

                                                                                                                                      I agree that the statistics for her to have a great future are very good.  If she is worried about hers being a c-kit melanoma then the onco-protein test might help ease her mind.  The other thing is that I was told in Oct 2006 that "We got it all, there is nothing to worry about."  By Feb 2007 I was stage IV.  I have talked  with many Stage I people (I refer them to my favorite stage I adviser, (YOU)    I am asked by many low stage peoiple that are extremely scared as to what they can look at to be ready if something else goes wrong.  If Kari is worried that hers might be an aggressive c-kit tumor, the local lab onco-protein test can either say it is or isn't. 

                                                                                                                                       As you also know, I don't advocate surrendering to a melanoma death fear even if ones melenoma is C-kit, mucosal, aggresive, not NED, etc.

                                                                                                                                    P.S. Kari, we have family in Titusvile, hope you like the area.  I didn't mean to scare you, just to give information that can let you knkow more about what is going on with this disease.

                                                                                                                                    JerryfromFauq
                                                                                                                                    Participant

                                                                                                                                      Janner I am refering back to Kari's post where she said

                                                                                                                                      Re: Marking correct choice?

                                                                                                                                      kbrenner

                                                                                                                                      "Just have a bad feeling and have been researching and found on the MD Anderson site the information on the different types on melanoma and that mucosal is usually found on the head and that even with early detection the outcome is often poor."  —-

                                                                                                                                      While we know that it is not common to fiind mucosal melanoma on ones head or any outside skin surface, It is very possible to find c-kit melanomas on ones head.  Did you see anything in the pathology report that would rule out hers being in that category? 

                                                                                                                                        I agree that the statistics for her to have a great future are very good.  If she is worried about hers being a c-kit melanoma then the onco-protein test might help ease her mind.  The other thing is that I was told in Oct 2006 that "We got it all, there is nothing to worry about."  By Feb 2007 I was stage IV.  I have talked  with many Stage I people (I refer them to my favorite stage I adviser, (YOU)    I am asked by many low stage peoiple that are extremely scared as to what they can look at to be ready if something else goes wrong.  If Kari is worried that hers might be an aggressive c-kit tumor, the local lab onco-protein test can either say it is or isn't. 

                                                                                                                                         As you also know, I don't advocate surrendering to a melanoma death fear even if ones melenoma is C-kit, mucosal, aggresive, not NED, etc.

                                                                                                                                      P.S. Kari, we have family in Titusvile, hope you like the area.  I didn't mean to scare you, just to give information that can let you knkow more about what is going on with this disease.

                                                                                                                                      Janner
                                                                                                                                      Participant

                                                                                                                                        I've never heard of a scalp melanoma being mucosal, Jerry, and the pathology report says "melanoma, not atypical nevus".  All the path indications are consistent with cutaneous melanoma.  In addition, the staging is stated T1A which is cutaneous melanoma, not mucosal.  (Mucosal doesn't have T1 or T2).  I've never heard of scalp cutaneous melanomas being different from any other cutaneous melanoma in terms of mutations.  I'm sure she was just researching and didn't understand the difference between cutaneous/mucosal when head was described – but I say cutaneous.  She can obviously verify this – it might even say on her path report (i.e. Superficial Spreading Melanoma)- but I still stand by my statement that none of this should be tested for mutations at this point.  This is an early lesion with little chance of spread.  Stage IA is different now since the new 2010 staging and a much more exclusive club with even better survival stats.  There is no comparing your mucosal with this cutaneous lesion in terms of risk.  Testing this accomplishes nothing at this point.  Surgery is needed, then proactive monitoring. 

                                                                                                                                        Cheers!

                                                                                                                                        Janner

                                                                                                                                        smiley

                                                                                                                                        Janner
                                                                                                                                        Participant

                                                                                                                                          I've never heard of a scalp melanoma being mucosal, Jerry, and the pathology report says "melanoma, not atypical nevus".  All the path indications are consistent with cutaneous melanoma.  In addition, the staging is stated T1A which is cutaneous melanoma, not mucosal.  (Mucosal doesn't have T1 or T2).  I've never heard of scalp cutaneous melanomas being different from any other cutaneous melanoma in terms of mutations.  I'm sure she was just researching and didn't understand the difference between cutaneous/mucosal when head was described – but I say cutaneous.  She can obviously verify this – it might even say on her path report (i.e. Superficial Spreading Melanoma)- but I still stand by my statement that none of this should be tested for mutations at this point.  This is an early lesion with little chance of spread.  Stage IA is different now since the new 2010 staging and a much more exclusive club with even better survival stats.  There is no comparing your mucosal with this cutaneous lesion in terms of risk.  Testing this accomplishes nothing at this point.  Surgery is needed, then proactive monitoring. 

                                                                                                                                          Cheers!

                                                                                                                                          Janner

                                                                                                                                          smiley

                                                                                                                                          Janner
                                                                                                                                          Participant

                                                                                                                                            I've never heard of a scalp melanoma being mucosal, Jerry, and the pathology report says "melanoma, not atypical nevus".  All the path indications are consistent with cutaneous melanoma.  In addition, the staging is stated T1A which is cutaneous melanoma, not mucosal.  (Mucosal doesn't have T1 or T2).  I've never heard of scalp cutaneous melanomas being different from any other cutaneous melanoma in terms of mutations.  I'm sure she was just researching and didn't understand the difference between cutaneous/mucosal when head was described – but I say cutaneous.  She can obviously verify this – it might even say on her path report (i.e. Superficial Spreading Melanoma)- but I still stand by my statement that none of this should be tested for mutations at this point.  This is an early lesion with little chance of spread.  Stage IA is different now since the new 2010 staging and a much more exclusive club with even better survival stats.  There is no comparing your mucosal with this cutaneous lesion in terms of risk.  Testing this accomplishes nothing at this point.  Surgery is needed, then proactive monitoring. 

                                                                                                                                            Cheers!

                                                                                                                                            Janner

                                                                                                                                            smiley

                                                                                                                                            JC
                                                                                                                                            Participant

                                                                                                                                              What is C-kit?  Is that a mutation in mucousal?  Or, is that one of the variations of superficial spreading?  And, if you have that variation, it's more aggressive?  So, if you have a thin melanoma as this person, 0.3mm, is the prognosis changed with this C-kit test?

                                                                                                                                              JC
                                                                                                                                              Participant

                                                                                                                                                What is C-kit?  Is that a mutation in mucousal?  Or, is that one of the variations of superficial spreading?  And, if you have that variation, it's more aggressive?  So, if you have a thin melanoma as this person, 0.3mm, is the prognosis changed with this C-kit test?

                                                                                                                                                JC
                                                                                                                                                Participant

                                                                                                                                                  What is C-kit?  Is that a mutation in mucousal?  Or, is that one of the variations of superficial spreading?  And, if you have that variation, it's more aggressive?  So, if you have a thin melanoma as this person, 0.3mm, is the prognosis changed with this C-kit test?

                                                                                                                                                  Janner
                                                                                                                                                  Participant

                                                                                                                                                    C-Kit is a mutation that is found in some mucosal melanomas.  It is not found (that I'm aware of) in cutaneous melanoma.  The C-Kit mutation responds to the drug Gleevec which gives people with mucosal melanoma C-Kit positive another treatment choice.  JerryFromFauq has responded to Gleevec with his mucosal melanoma which is fantastic!

                                                                                                                                                    There are no genetic mutation tests done on primaries that give any prognosis data – the normal staging criteria are the best indication of prognosis that you can get at this time. Mutation testing is typically done in metastatic tumors (not primaries) to look for other treatment avenues.  There is no way to predict if a primary will have all the same mutations as a metastatic tumor.  Staging criteria changes with technology and if some other test (mutation or whatever) offers a better prognosis indicator, it would be added to the staging criteria in the future.

                                                                                                                                                    JerryfromFauq
                                                                                                                                                    Participant

                                                                                                                                                      head and neck c-kit melanomas were just starating to be looked at hard in 2008 as was the start of Gleevec for some C-kit melanomas.

                                                                                                                                                      http://www.path.utah.edu/news/targeted-cancer-therapy

                                                                                                                                                      Breakthrough:

                                                                                                                                                      When the melanomas were tested for c-kit mutations, surprisingly, 3 of the 150 melanomas were positive. Because c-kit mutation positive GISTs respond to Gleevec, this suggests that these c-kit positive melanomas might also respond. This exciting work was published in the journal Human Pathology in 2006.  Since that time, other groups have also reported c-kit mutations in melanoma. Remarkably, there seems to be a location preference for those tumors which have c-kit mutations. Melanomas arising in sites that receive chronic sun damage like the head and neck as well as mucosal melanomas have a higher percentage of c-kit mutations than those arising on the arms and trunk.  Clinical trials are currently underway in Boston and New York to determine if patients with c-kit mutation positive melanomas respond to Gleevec. 

                                                                                                                                                       

                                                                                                                                                      http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/HealthProfessional/page9

                                                                                                                                                       

                                                                                                                                                      http://www.jewds.eg.net/pdf/vol_6_2/4.pdf

                                                                                                                                                      Clinical results

                                                                                                                                                      The present study included a total of 12 patients with cutaneous and oral malignant melanoma.

                                                                                                                                                      Among those 12 cases 9 were males and 3 were females. Patients age ranged between 55 and 70

                                                                                                                                                      years with a mean age of 62.5 years. Ten out of the 12 examined cases of malignant

                                                                                                                                                      melanoma were cutaneous and 2 were oral mucosal melanomas.

                                                                                                                                                      Immunohistochemical results

                                                                                                                                                      CD117 (c-kit) expression

                                                                                                                                                      Eight out of the 12 (66.6%) malignant melanomas were c-kit immunopositive. Six were cutaneous and 2 were mucosal.

                                                                                                                                                       

                                                                                                                                                      Janner, cutaneous and mucosal have to do with the type tissue where the tumor is and is only indirectly related to the type oncoproteins and mutations involved. The location is not completely definitive as to the type oncoproteins nor DNA mutation in a tumor.

                                                                                                                                                      I, like you, fear that we have gotten too far in this topic to still be helping Kari. I have no problem with anything you have told her for Stage I advice. I hope she never needs more info (her odds of remaining clear now being 90-95% are great!)

                                                                                                                                                      Janner, If you want to email me to discuss this further, please do so. You have my email addy. I do not want to add to the Ladies anguish and or confusion.Suspect that when the poncoprotein and especially mutation testing gets cheaper it will become routine torun these type tests on the tumor when originally biopsied.

                                                                                                                                                      Kari, the main thing now is to be vigilant, not paranoid. Hope I haven't upset you. Janner is the greatest here and especially so for hanging around helping new, low stage people. She knows so much about the early melanomas that I missed during my 3 ½ years of being misdiagnosed.

                                                                                                                                                      JerryfromFauq
                                                                                                                                                      Participant

                                                                                                                                                        head and neck c-kit melanomas were just starating to be looked at hard in 2008 as was the start of Gleevec for some C-kit melanomas.

                                                                                                                                                        http://www.path.utah.edu/news/targeted-cancer-therapy

                                                                                                                                                        Breakthrough:

                                                                                                                                                        When the melanomas were tested for c-kit mutations, surprisingly, 3 of the 150 melanomas were positive. Because c-kit mutation positive GISTs respond to Gleevec, this suggests that these c-kit positive melanomas might also respond. This exciting work was published in the journal Human Pathology in 2006.  Since that time, other groups have also reported c-kit mutations in melanoma. Remarkably, there seems to be a location preference for those tumors which have c-kit mutations. Melanomas arising in sites that receive chronic sun damage like the head and neck as well as mucosal melanomas have a higher percentage of c-kit mutations than those arising on the arms and trunk.  Clinical trials are currently underway in Boston and New York to determine if patients with c-kit mutation positive melanomas respond to Gleevec. 

                                                                                                                                                         

                                                                                                                                                        http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/HealthProfessional/page9

                                                                                                                                                         

                                                                                                                                                        http://www.jewds.eg.net/pdf/vol_6_2/4.pdf

                                                                                                                                                        Clinical results

                                                                                                                                                        The present study included a total of 12 patients with cutaneous and oral malignant melanoma.

                                                                                                                                                        Among those 12 cases 9 were males and 3 were females. Patients age ranged between 55 and 70

                                                                                                                                                        years with a mean age of 62.5 years. Ten out of the 12 examined cases of malignant

                                                                                                                                                        melanoma were cutaneous and 2 were oral mucosal melanomas.

                                                                                                                                                        Immunohistochemical results

                                                                                                                                                        CD117 (c-kit) expression

                                                                                                                                                        Eight out of the 12 (66.6%) malignant melanomas were c-kit immunopositive. Six were cutaneous and 2 were mucosal.

                                                                                                                                                         

                                                                                                                                                        Janner, cutaneous and mucosal have to do with the type tissue where the tumor is and is only indirectly related to the type oncoproteins and mutations involved. The location is not completely definitive as to the type oncoproteins nor DNA mutation in a tumor.

                                                                                                                                                        I, like you, fear that we have gotten too far in this topic to still be helping Kari. I have no problem with anything you have told her for Stage I advice. I hope she never needs more info (her odds of remaining clear now being 90-95% are great!)

                                                                                                                                                        Janner, If you want to email me to discuss this further, please do so. You have my email addy. I do not want to add to the Ladies anguish and or confusion.Suspect that when the poncoprotein and especially mutation testing gets cheaper it will become routine torun these type tests on the tumor when originally biopsied.

                                                                                                                                                        Kari, the main thing now is to be vigilant, not paranoid. Hope I haven't upset you. Janner is the greatest here and especially so for hanging around helping new, low stage people. She knows so much about the early melanomas that I missed during my 3 ½ years of being misdiagnosed.

                                                                                                                                                        JerryfromFauq
                                                                                                                                                        Participant

                                                                                                                                                          head and neck c-kit melanomas were just starating to be looked at hard in 2008 as was the start of Gleevec for some C-kit melanomas.

                                                                                                                                                          http://www.path.utah.edu/news/targeted-cancer-therapy

                                                                                                                                                          Breakthrough:

                                                                                                                                                          When the melanomas were tested for c-kit mutations, surprisingly, 3 of the 150 melanomas were positive. Because c-kit mutation positive GISTs respond to Gleevec, this suggests that these c-kit positive melanomas might also respond. This exciting work was published in the journal Human Pathology in 2006.  Since that time, other groups have also reported c-kit mutations in melanoma. Remarkably, there seems to be a location preference for those tumors which have c-kit mutations. Melanomas arising in sites that receive chronic sun damage like the head and neck as well as mucosal melanomas have a higher percentage of c-kit mutations than those arising on the arms and trunk.  Clinical trials are currently underway in Boston and New York to determine if patients with c-kit mutation positive melanomas respond to Gleevec. 

                                                                                                                                                           

                                                                                                                                                          http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/HealthProfessional/page9

                                                                                                                                                           

                                                                                                                                                          http://www.jewds.eg.net/pdf/vol_6_2/4.pdf

                                                                                                                                                          Clinical results

                                                                                                                                                          The present study included a total of 12 patients with cutaneous and oral malignant melanoma.

                                                                                                                                                          Among those 12 cases 9 were males and 3 were females. Patients age ranged between 55 and 70

                                                                                                                                                          years with a mean age of 62.5 years. Ten out of the 12 examined cases of malignant

                                                                                                                                                          melanoma were cutaneous and 2 were oral mucosal melanomas.

                                                                                                                                                          Immunohistochemical results

                                                                                                                                                          CD117 (c-kit) expression

                                                                                                                                                          Eight out of the 12 (66.6%) malignant melanomas were c-kit immunopositive. Six were cutaneous and 2 were mucosal.

                                                                                                                                                           

                                                                                                                                                          Janner, cutaneous and mucosal have to do with the type tissue where the tumor is and is only indirectly related to the type oncoproteins and mutations involved. The location is not completely definitive as to the type oncoproteins nor DNA mutation in a tumor.

                                                                                                                                                          I, like you, fear that we have gotten too far in this topic to still be helping Kari. I have no problem with anything you have told her for Stage I advice. I hope she never needs more info (her odds of remaining clear now being 90-95% are great!)

                                                                                                                                                          Janner, If you want to email me to discuss this further, please do so. You have my email addy. I do not want to add to the Ladies anguish and or confusion.Suspect that when the poncoprotein and especially mutation testing gets cheaper it will become routine torun these type tests on the tumor when originally biopsied.

                                                                                                                                                          Kari, the main thing now is to be vigilant, not paranoid. Hope I haven't upset you. Janner is the greatest here and especially so for hanging around helping new, low stage people. She knows so much about the early melanomas that I missed during my 3 ½ years of being misdiagnosed.

                                                                                                                                                          Janner
                                                                                                                                                          Participant

                                                                                                                                                            No worries, Jerry.  Hadn't seen that info before.  Wish it included more patients than just 12.  (I hate small studies as you never know if results will hold out in larger groups).  Good to know, however it doesn't change my thoughts for Kari.  Her likelihood of recurrence is so low that she just needs surgery and moving on.  This might be something to dredge up for someone with a much deeper head/neck primary.  yes

                                                                                                                                                            Cheerio!

                                                                                                                                                            J

                                                                                                                                                            Janner
                                                                                                                                                            Participant

                                                                                                                                                              No worries, Jerry.  Hadn't seen that info before.  Wish it included more patients than just 12.  (I hate small studies as you never know if results will hold out in larger groups).  Good to know, however it doesn't change my thoughts for Kari.  Her likelihood of recurrence is so low that she just needs surgery and moving on.  This might be something to dredge up for someone with a much deeper head/neck primary.  yes

                                                                                                                                                              Cheerio!

                                                                                                                                                              J

                                                                                                                                                              kbrenner
                                                                                                                                                              Participant

                                                                                                                                                                Thanks to both Janner and Jerry, for all the information.  I'm learning and understanding more everyday.  I did find out that my biopsey was tested and then sent to another person (who is supposed to be the best in the area I'm told).  I spoke with my surgeon today and he assured me that after the surgery every thing he removed would be completely tested.  All the nurses and Dr.s keep telling me I'm be fine.  It makes me feel better that my Derm. has had melanoma twice herself, and probably understands what I'm going through better then someone who has not had it.  Plus she has assured me I would be fine and that she would have sent me to the cancer clinic if she though otherwise.  I've also spoke with someone I know and respect who has had prostate cancer and when I found out my husband had it recommended the Surgeon he used at Johns Hopkins, which we did (had not spread, so he's doing great no further treatment needed).  He has also been to Houston for radiology and is a strong believer in going anywhere in the country to get the best treatment.  He is very familiar with the Dr.s in the area and believe's I'm making the correct choice.  I needed to do my own research and find out more about what I'm dealing with to do that.  You have helped me with that and I thank you.  I'm going to move forward with the surgery, hope everything goes smoothly and hope for a quick recovery.  Now I just need to find to go shopping and try to find some nice loose clothing to wear after the surgery and think about what I'm going to do about my hair once my scalp has healed up enought to do something about it.

                                                                                                                                                                kbrenner
                                                                                                                                                                Participant

                                                                                                                                                                  Thanks to both Janner and Jerry, for all the information.  I'm learning and understanding more everyday.  I did find out that my biopsey was tested and then sent to another person (who is supposed to be the best in the area I'm told).  I spoke with my surgeon today and he assured me that after the surgery every thing he removed would be completely tested.  All the nurses and Dr.s keep telling me I'm be fine.  It makes me feel better that my Derm. has had melanoma twice herself, and probably understands what I'm going through better then someone who has not had it.  Plus she has assured me I would be fine and that she would have sent me to the cancer clinic if she though otherwise.  I've also spoke with someone I know and respect who has had prostate cancer and when I found out my husband had it recommended the Surgeon he used at Johns Hopkins, which we did (had not spread, so he's doing great no further treatment needed).  He has also been to Houston for radiology and is a strong believer in going anywhere in the country to get the best treatment.  He is very familiar with the Dr.s in the area and believe's I'm making the correct choice.  I needed to do my own research and find out more about what I'm dealing with to do that.  You have helped me with that and I thank you.  I'm going to move forward with the surgery, hope everything goes smoothly and hope for a quick recovery.  Now I just need to find to go shopping and try to find some nice loose clothing to wear after the surgery and think about what I'm going to do about my hair once my scalp has healed up enought to do something about it.

                                                                                                                                                                  JerryfromFauq
                                                                                                                                                                  Participant

                                                                                                                                                                    Kari, just one more request.  Please let us know the results of each step you go thru, we love to see reports that make others feel good.  I cannot do much besides quote statistics for stages 1 thru 3.  The ones in those categories can give personal notice that life can go on.

                                                                                                                                                                    JerryfromFauq
                                                                                                                                                                    Participant

                                                                                                                                                                      Kari, just one more request.  Please let us know the results of each step you go thru, we love to see reports that make others feel good.  I cannot do much besides quote statistics for stages 1 thru 3.  The ones in those categories can give personal notice that life can go on.

                                                                                                                                                                      kbrenner
                                                                                                                                                                      Participant

                                                                                                                                                                        Will do!  Also, I forgot to mention we do like the Titusville area, especially for the boating, not so crowded. That's were we are at and have friends flying in tomorrow and will be here till Tuesday.  This was planned before I was diagnosed and they are hoping to get on the boat, me too!  I have my SPF hats now and my Cotz sunscreen and will be careful.  We moved south because my husband hates the cold, and we've always spend alot of time on boat or at the pool and of course the beach.  My 4 year old granddaughter is a little fish and planning to be a mermaid.  I do make her ware a hat and always lots of sunscreen and reapply of course. Have to get some more umbrellas.  Probably won't be on line much if at all this weekend.  Will keep you updated.  Thanks again!

                                                                                                                                                                        Kari

                                                                                                                                                                        kbrenner
                                                                                                                                                                        Participant

                                                                                                                                                                          Will do!  Also, I forgot to mention we do like the Titusville area, especially for the boating, not so crowded. That's were we are at and have friends flying in tomorrow and will be here till Tuesday.  This was planned before I was diagnosed and they are hoping to get on the boat, me too!  I have my SPF hats now and my Cotz sunscreen and will be careful.  We moved south because my husband hates the cold, and we've always spend alot of time on boat or at the pool and of course the beach.  My 4 year old granddaughter is a little fish and planning to be a mermaid.  I do make her ware a hat and always lots of sunscreen and reapply of course. Have to get some more umbrellas.  Probably won't be on line much if at all this weekend.  Will keep you updated.  Thanks again!

                                                                                                                                                                          Kari

                                                                                                                                                                          kbrenner
                                                                                                                                                                          Participant

                                                                                                                                                                            Will do!  Also, I forgot to mention we do like the Titusville area, especially for the boating, not so crowded. That's were we are at and have friends flying in tomorrow and will be here till Tuesday.  This was planned before I was diagnosed and they are hoping to get on the boat, me too!  I have my SPF hats now and my Cotz sunscreen and will be careful.  We moved south because my husband hates the cold, and we've always spend alot of time on boat or at the pool and of course the beach.  My 4 year old granddaughter is a little fish and planning to be a mermaid.  I do make her ware a hat and always lots of sunscreen and reapply of course. Have to get some more umbrellas.  Probably won't be on line much if at all this weekend.  Will keep you updated.  Thanks again!

                                                                                                                                                                            Kari

                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                            Participant

                                                                                                                                                                              Kari, just one more request.  Please let us know the results of each step you go thru, we love to see reports that make others feel good.  I cannot do much besides quote statistics for stages 1 thru 3.  The ones in those categories can give personal notice that life can go on.

                                                                                                                                                                              kbrenner
                                                                                                                                                                              Participant

                                                                                                                                                                                Thanks to both Janner and Jerry, for all the information.  I'm learning and understanding more everyday.  I did find out that my biopsey was tested and then sent to another person (who is supposed to be the best in the area I'm told).  I spoke with my surgeon today and he assured me that after the surgery every thing he removed would be completely tested.  All the nurses and Dr.s keep telling me I'm be fine.  It makes me feel better that my Derm. has had melanoma twice herself, and probably understands what I'm going through better then someone who has not had it.  Plus she has assured me I would be fine and that she would have sent me to the cancer clinic if she though otherwise.  I've also spoke with someone I know and respect who has had prostate cancer and when I found out my husband had it recommended the Surgeon he used at Johns Hopkins, which we did (had not spread, so he's doing great no further treatment needed).  He has also been to Houston for radiology and is a strong believer in going anywhere in the country to get the best treatment.  He is very familiar with the Dr.s in the area and believe's I'm making the correct choice.  I needed to do my own research and find out more about what I'm dealing with to do that.  You have helped me with that and I thank you.  I'm going to move forward with the surgery, hope everything goes smoothly and hope for a quick recovery.  Now I just need to find to go shopping and try to find some nice loose clothing to wear after the surgery and think about what I'm going to do about my hair once my scalp has healed up enought to do something about it.

                                                                                                                                                                                Janner
                                                                                                                                                                                Participant

                                                                                                                                                                                  No worries, Jerry.  Hadn't seen that info before.  Wish it included more patients than just 12.  (I hate small studies as you never know if results will hold out in larger groups).  Good to know, however it doesn't change my thoughts for Kari.  Her likelihood of recurrence is so low that she just needs surgery and moving on.  This might be something to dredge up for someone with a much deeper head/neck primary.  yes

                                                                                                                                                                                  Cheerio!

                                                                                                                                                                                  J

                                                                                                                                                                                  Janner
                                                                                                                                                                                  Participant

                                                                                                                                                                                    C-Kit is a mutation that is found in some mucosal melanomas.  It is not found (that I'm aware of) in cutaneous melanoma.  The C-Kit mutation responds to the drug Gleevec which gives people with mucosal melanoma C-Kit positive another treatment choice.  JerryFromFauq has responded to Gleevec with his mucosal melanoma which is fantastic!

                                                                                                                                                                                    There are no genetic mutation tests done on primaries that give any prognosis data – the normal staging criteria are the best indication of prognosis that you can get at this time. Mutation testing is typically done in metastatic tumors (not primaries) to look for other treatment avenues.  There is no way to predict if a primary will have all the same mutations as a metastatic tumor.  Staging criteria changes with technology and if some other test (mutation or whatever) offers a better prognosis indicator, it would be added to the staging criteria in the future.

                                                                                                                                                                                    Janner
                                                                                                                                                                                    Participant

                                                                                                                                                                                      C-Kit is a mutation that is found in some mucosal melanomas.  It is not found (that I'm aware of) in cutaneous melanoma.  The C-Kit mutation responds to the drug Gleevec which gives people with mucosal melanoma C-Kit positive another treatment choice.  JerryFromFauq has responded to Gleevec with his mucosal melanoma which is fantastic!

                                                                                                                                                                                      There are no genetic mutation tests done on primaries that give any prognosis data – the normal staging criteria are the best indication of prognosis that you can get at this time. Mutation testing is typically done in metastatic tumors (not primaries) to look for other treatment avenues.  There is no way to predict if a primary will have all the same mutations as a metastatic tumor.  Staging criteria changes with technology and if some other test (mutation or whatever) offers a better prognosis indicator, it would be added to the staging criteria in the future.

                                                                                                                                                                                      Janner
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Jerry, why are you recommending a C-Kit test for a cutaneous melanoma that is .3mm (stage IA)?  I don't get it.  This lesion has about a 98% survival rate.  It's not mucosal.  There is no reason to check for BRAF or anything else at this point.  I'm sorry, but I'm a bit baffled.  This lesion should be excised and the OP move on with life.  IF, and that's a big IF, there is a recurrence (extremely unlikely) – you go from there.  Tests taken today are unlikely to be relative later as this field is changing fast.  Am I missing something here?  No doctor will recommend or insurance company will pay for that testing at this stage and I, personally, I think it is just confusing a newly diagnosed person with an excellent prognosis to suggest anything for "future treatment" at this point.

                                                                                                                                                                                        Just my thoughts,

                                                                                                                                                                                        Janner

                                                                                                                                                                                        Janner
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Jerry, why are you recommending a C-Kit test for a cutaneous melanoma that is .3mm (stage IA)?  I don't get it.  This lesion has about a 98% survival rate.  It's not mucosal.  There is no reason to check for BRAF or anything else at this point.  I'm sorry, but I'm a bit baffled.  This lesion should be excised and the OP move on with life.  IF, and that's a big IF, there is a recurrence (extremely unlikely) – you go from there.  Tests taken today are unlikely to be relative later as this field is changing fast.  Am I missing something here?  No doctor will recommend or insurance company will pay for that testing at this stage and I, personally, I think it is just confusing a newly diagnosed person with an excellent prognosis to suggest anything for "future treatment" at this point.

                                                                                                                                                                                          Just my thoughts,

                                                                                                                                                                                          Janner

                                                                                                                                                                                          JC
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Such an early, thin melanoma that won't require any treatment after surgery, I don't know that they or your insurance would go for testing it for which mutations it might have.  Whether it's BRAF + or – at this stage doesn't really matter.  And, if you were to get another primary later more advanced, they'd have to test that one anyway, wouldn't necessarily be the same as this one.  So, I don't know there is any value in testing this early/thin lesion for which mutations it might have, since you won't be getting any adjuvant therapy anyway after surgery.

                                                                                                                                                                                            JC
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Such an early, thin melanoma that won't require any treatment after surgery, I don't know that they or your insurance would go for testing it for which mutations it might have.  Whether it's BRAF + or – at this stage doesn't really matter.  And, if you were to get another primary later more advanced, they'd have to test that one anyway, wouldn't necessarily be the same as this one.  So, I don't know there is any value in testing this early/thin lesion for which mutations it might have, since you won't be getting any adjuvant therapy anyway after surgery.

                                                                                                                                                                                              kbrenner
                                                                                                                                                                                              Participant

                                                                                                                                                                                                You are correct it is the diameter that they are referring to by the .3cm.  The pathology report does say Breslow Thickness 0.3 mm.  It also says Malignant Melanoma, Peripheral, Margins positive for tumer. 

                                                                                                                                                                                                I was reading something on the MD Anderson site that was listed the Melanoma Types and it said that Mucosal Melanoma's most common sites are head and neck region and that got me worried.  After reading what everyone has to say I feel much better about it.  I will go ahead with the surgery and am already scheduled to go back to the Derm. at the beginning of Nov. for another body check. 

                                                                                                                                                                                                Thank you for the suggestion of having the tumor saved for other tests.  I will also check on getting it tested or following up with Moffit or MD/Aderson.   Thank you and Janner and everyone else who has responded.  I really appreciate it.  Of to work for me now.

                                                                                                                                                                                                kbrenner
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  You are correct it is the diameter that they are referring to by the .3cm.  The pathology report does say Breslow Thickness 0.3 mm.  It also says Malignant Melanoma, Peripheral, Margins positive for tumer. 

                                                                                                                                                                                                  I was reading something on the MD Anderson site that was listed the Melanoma Types and it said that Mucosal Melanoma's most common sites are head and neck region and that got me worried.  After reading what everyone has to say I feel much better about it.  I will go ahead with the surgery and am already scheduled to go back to the Derm. at the beginning of Nov. for another body check. 

                                                                                                                                                                                                  Thank you for the suggestion of having the tumor saved for other tests.  I will also check on getting it tested or following up with Moffit or MD/Aderson.   Thank you and Janner and everyone else who has responded.  I really appreciate it.  Of to work for me now.

                                                                                                                                                                                                JerryfromFauq
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  I suspect that there is a misunderstanding as to which type  of melanoma this is.  Someone has made a statment that is not likely.  Mucosal melanoma occurrs on mucosal type skin surfaces.  However the problem is that Mucosal melanoma may also be a C-kit melanoma.  Acral Lentigimous Melanoma (ALM) can occure on the head and soles of the feet (and other locations.  ALM can also be a c-kit  melanoma.  The treatment for c-kit melanoma will likely be the same regardless of which of the c-kit melanoma's one has.  Other melanomas may also have the c-kit onco-protein and DNA mutation, but are less likely to than the Mucosal and ALM.  I have mucosal melanoma and went to stage IV in 2007, shortly after my local general surgeon found I had melanoma in 2006 (after 3 1/2 years of being mis-diagnosed locally), but he delayed folow-up through his lack of knowledge about melanoma.

                                                                                                                                                                                                    The Pathology report should state Mucosal melanoma, Acral Lentigimous melanoma, etc.  The Pathology report will not tell if the tumor material is positive for C-kit, BRAF nor any of the other onco-proteiins or DNA mutatiions.  Seperate tests are required to obtain this info.

                                                                                                                                                                                                     Be sure the tumor material is saved to be available for thes other tests to help detemin posible future treatment if your melanoma reoccrs.  (Hopefully the second spot is  not melanoma.)  Personally I would go to either Moffit or MD /Anderson in Orlando if I was back hoome in Florida.  I have learned that very few dermatologists or general Oncologists can keep up with the currently fast changing field of Melanoma research.  (Hard for even a Melanoma specialist to keep up.) 

                                                                                                                                                                                                     I do worry about the confusion as to the depth and name provided here for your melanoma.  As Janner has pointed out there is a large difference in staging and likehood of spread between a .3 mm depth of tumor and a .3 cm (3 mm) tumor.  Since you are talking about skin graft, is there a chance that diameter rather than depth is being referred to by the .3 cm?

                                                                                                                                                                                                      I can understand going ahead with the current schedule for removal of the tumor margins (WLE) wide local excession.  In would then request a follow up with the melanoma specialists at Moffit.

                                                                                                                                                                                                  JerryfromFauq
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    I suspect that there is a misunderstanding as to which type  of melanoma this is.  Someone has made a statment that is not likely.  Mucosal melanoma occurrs on mucosal type skin surfaces.  However the problem is that Mucosal melanoma may also be a C-kit melanoma.  Acral Lentigimous Melanoma (ALM) can occure on the head and soles of the feet (and other locations.  ALM can also be a c-kit  melanoma.  The treatment for c-kit melanoma will likely be the same regardless of which of the c-kit melanoma's one has.  Other melanomas may also have the c-kit onco-protein and DNA mutation, but are less likely to than the Mucosal and ALM.  I have mucosal melanoma and went to stage IV in 2007, shortly after my local general surgeon found I had melanoma in 2006 (after 3 1/2 years of being mis-diagnosed locally), but he delayed folow-up through his lack of knowledge about melanoma.

                                                                                                                                                                                                      The Pathology report should state Mucosal melanoma, Acral Lentigimous melanoma, etc.  The Pathology report will not tell if the tumor material is positive for C-kit, BRAF nor any of the other onco-proteiins or DNA mutatiions.  Seperate tests are required to obtain this info.

                                                                                                                                                                                                       Be sure the tumor material is saved to be available for thes other tests to help detemin posible future treatment if your melanoma reoccrs.  (Hopefully the second spot is  not melanoma.)  Personally I would go to either Moffit or MD /Anderson in Orlando if I was back hoome in Florida.  I have learned that very few dermatologists or general Oncologists can keep up with the currently fast changing field of Melanoma research.  (Hard for even a Melanoma specialist to keep up.) 

                                                                                                                                                                                                       I do worry about the confusion as to the depth and name provided here for your melanoma.  As Janner has pointed out there is a large difference in staging and likehood of spread between a .3 mm depth of tumor and a .3 cm (3 mm) tumor.  Since you are talking about skin graft, is there a chance that diameter rather than depth is being referred to by the .3 cm?

                                                                                                                                                                                                        I can understand going ahead with the current schedule for removal of the tumor margins (WLE) wide local excession.  In would then request a follow up with the melanoma specialists at Moffit.

                                                                                                                                                                                                    JC
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      It's unlikely that a IA 0.3mm lesion would recur; but, if it did, it might not be for years later. . 5 years, 6 years, 7 years or more. . .and probably wherever you might be at that time for treatment they would want to do their own genetic tests on the melanoma anyway, even if you had a test from 2012.

                                                                                                                                                                                                      JC
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        It's unlikely that a IA 0.3mm lesion would recur; but, if it did, it might not be for years later. . 5 years, 6 years, 7 years or more. . .and probably wherever you might be at that time for treatment they would want to do their own genetic tests on the melanoma anyway, even if you had a test from 2012.

                                                                                                                                                                                                        JC
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          It's unlikely that a IA 0.3mm lesion would recur; but, if it did, it might not be for years later. . 5 years, 6 years, 7 years or more. . .and probably wherever you might be at that time for treatment they would want to do their own genetic tests on the melanoma anyway, even if you had a test from 2012.

                                                                                                                                                                                                          MDKate
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            I was diagnosed in 1979 with superficial spreading melanoma and am now stage IV.  Follow up with dermatologist only or involve an oncologist — and credit my surviving this long to advice I got many years ago — see dermatologist for all regular follow-up care but t least develop a relationship with an oncologist specializing in melanoma you see every year or two. Does not have to entail uprooting yourself to go out of state — a good teaching hospital with cancer center accreditation is sufficient (all melanoma experts in the country know one another anyway — if one you see needs to reach out they know know how to how and whom to contact). Oncologist also recommended getting a baseline PET scan and having dermatologist do full-body photos there will be a reference point for tracking changes down the line. Turned out to be best decision — when I was surprised in 2006 as stage IV after 25 years disease-free doctors could date disease changes much more precisely.   Btw, one of my my many lesions was scalp one — surgeon removed but said that  follow-up radiation to scalp was advisable unless I was going to be receiving treatment that prohibited it (which I am).  Best of luck no matter what you decide. 

                                                                                                                                                                                                            MDKate
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              I was diagnosed in 1979 with superficial spreading melanoma and am now stage IV.  Follow up with dermatologist only or involve an oncologist — and credit my surviving this long to advice I got many years ago — see dermatologist for all regular follow-up care but t least develop a relationship with an oncologist specializing in melanoma you see every year or two. Does not have to entail uprooting yourself to go out of state — a good teaching hospital with cancer center accreditation is sufficient (all melanoma experts in the country know one another anyway — if one you see needs to reach out they know know how to how and whom to contact). Oncologist also recommended getting a baseline PET scan and having dermatologist do full-body photos there will be a reference point for tracking changes down the line. Turned out to be best decision — when I was surprised in 2006 as stage IV after 25 years disease-free doctors could date disease changes much more precisely.   Btw, one of my my many lesions was scalp one — surgeon removed but said that  follow-up radiation to scalp was advisable unless I was going to be receiving treatment that prohibited it (which I am).  Best of luck no matter what you decide. 

                                                                                                                                                                                                              MDKate
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                I was diagnosed in 1979 with superficial spreading melanoma and am now stage IV.  Follow up with dermatologist only or involve an oncologist — and credit my surviving this long to advice I got many years ago — see dermatologist for all regular follow-up care but t least develop a relationship with an oncologist specializing in melanoma you see every year or two. Does not have to entail uprooting yourself to go out of state — a good teaching hospital with cancer center accreditation is sufficient (all melanoma experts in the country know one another anyway — if one you see needs to reach out they know know how to how and whom to contact). Oncologist also recommended getting a baseline PET scan and having dermatologist do full-body photos there will be a reference point for tracking changes down the line. Turned out to be best decision — when I was surprised in 2006 as stage IV after 25 years disease-free doctors could date disease changes much more precisely.   Btw, one of my my many lesions was scalp one — surgeon removed but said that  follow-up radiation to scalp was advisable unless I was going to be receiving treatment that prohibited it (which I am).  Best of luck no matter what you decide. 

                                                                                                                                                                                                            Viewing 23 reply threads
                                                                                                                                                                                                            • You must be logged in to reply to this topic.
                                                                                                                                                                                                            About the MRF Patient Forum

                                                                                                                                                                                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                                                                                                                                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byย MRF posting policies.

                                                                                                                                                                                                            Popular Topics