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I am new here and looking for support.

Forums General Melanoma Community I am new here and looking for support.

  • Post
    Cindy33
    Participant

      Hello All,

      Hello All,

      Thank everyone for posting. I am finding comfort here and realizing I am not alone. I have had 2 primary melanomas and one severely atypical. One SNB, 3 WLE and am scheduled for one more WLE this week. None of my moles looked suspicious to the docs and they have been shocked when they come back melanoma/atypical. I currently am waiting to get stitches removed from MIS and will also have WLE on the same day. Waiting for results on several other biopsies, and have identified one suspicious changing mole and three new ones!  I am sick of being cut on and stitched up but grateful for the chance to catch these moles early.  I have had so many biospies I have lost count.

      I am interested in mole mapping, but don't know much about it. I know OHSU does it, but do not believe insurance covers it. I see that I can order a software mole mapping program. Has anyone used that?  I am worried about what this means for my children and grandchildren. I am on a roller coaster of fear and panic. I am stage 1, but thinking that at some point, sheer numbers of problem moles might change that. 

      Anyone with tips regarding mole mapping? Also, how do I know my dermatologist is acutally a melanoma specialist? I am in the Pacific Northwest, about 1 hour from Portland. I am considering going to Fred Hutchinson Cancer Center in Seattle or Angels. Overkill? (pun intended) I like my derm and PA, just want to make sure I am doing what I need to do to take care of myself. 

      Thank you and God bless you all. 

      Cindy

    Viewing 11 reply threads
    • Replies
        Gene_S
        Participant

          Hello,  You can ask them if they specialize in melanoma and if not can they recommend someone that does.  You might also be able to tell by doing a search on the internet about your doctors.

          As far as the mole mapping I cannot help with that.  Your children are at the biggest risk for developing melanoma as well as siblings.

          Judy

            Cindy33
            Participant

              Thank you for your response.

              Cindy33
              Participant

                Thank you for your response.

                Cindy33
                Participant

                  Thank you for your response.

                Gene_S
                Participant

                  Hello,  You can ask them if they specialize in melanoma and if not can they recommend someone that does.  You might also be able to tell by doing a search on the internet about your doctors.

                  As far as the mole mapping I cannot help with that.  Your children are at the biggest risk for developing melanoma as well as siblings.

                  Judy

                  Gene_S
                  Participant

                    Hello,  You can ask them if they specialize in melanoma and if not can they recommend someone that does.  You might also be able to tell by doing a search on the internet about your doctors.

                    As far as the mole mapping I cannot help with that.  Your children are at the biggest risk for developing melanoma as well as siblings.

                    Judy

                    Fen
                    Participant

                      Hi Cindy –  Janner has a discussion group specifically for Stage 1 and 2 (?) people where you are likely to get your mole mapping question answered.    I think if you contact her you can find out more.  Use the search function.  Good luck!    Fen

                        Cindy33
                        Participant

                          Thank you very much.

                          Cindy33
                          Participant

                            Thank you very much.

                            Cindy33
                            Participant

                              Thank you very much.

                            Fen
                            Participant

                              Hi Cindy –  Janner has a discussion group specifically for Stage 1 and 2 (?) people where you are likely to get your mole mapping question answered.    I think if you contact her you can find out more.  Use the search function.  Good luck!    Fen

                              Fen
                              Participant

                                Hi Cindy –  Janner has a discussion group specifically for Stage 1 and 2 (?) people where you are likely to get your mole mapping question answered.    I think if you contact her you can find out more.  Use the search function.  Good luck!    Fen

                                Janner
                                Participant

                                  It sounds like you may have dysplastic nevus syndrome.  Mole mapping was designed for someone like you.  The idea is they take digital pictures at every visit.  The images are then compared to previous images via software and/or doctor.  Anything showing change is candidate for biopsy.   The point of doing these very detailed comparisons is to eliminate unnecessary biopsies.  Many moles may be atypical, but usually if they aren't changing, they aren't hurting you.  New moles don't have to be a problem either.  New and similar to everything else is ok.  New and different is worth a biopsy.  My institution has been doing a clinical study with mole mapping.  Not sure their numbers now, but a couple of years ago they had mapped over 4000 moles.  Over a several year period, 98% of those moles were stable and therefore not biopsied.  I've had it done, but I opted out in favor of basic photographs.  I've had 3 primaries, but I don't have dystplastic nevus syndrome – not enough moles.  Most things on me are stable at this point in time.  When I was doing it years ago, it was covered by my insurance.  Actually, I'm not even sure my institution billed for it but I don't remember for certain.  How it works now is beyond me.  But it seems like something that would be worth checking out with all the biopsies you've had.

                                  Good luck on finding a new comfort zone.  I truthfully don't rely on my doc to find my primaries, I know my body best and I know what doesn't seem right.  I like having a second pair of eyes, but when it comes right down to it, I decide if we biopsy or not.  Having lots of moles does make things more challenging.

                                  You can do a search for cutaneous oncologists – they are skin cancer specialists.  Some dermatologists may be as well, but they tend to advertise as such.  In the end, though, it is where you feel the most comfortable.  If you don't work well with a doctor, it doesn't matter how good (s)he is at their job.  It's about finding someone who will work WITH you and treat you like you are a valued team member.  If your derm provides that, then that sounds good to me.  However, you might still want to investigate mole mapping as a way to decrease biopsies.

                                  Janner

                                  Janner
                                  Participant

                                    It sounds like you may have dysplastic nevus syndrome.  Mole mapping was designed for someone like you.  The idea is they take digital pictures at every visit.  The images are then compared to previous images via software and/or doctor.  Anything showing change is candidate for biopsy.   The point of doing these very detailed comparisons is to eliminate unnecessary biopsies.  Many moles may be atypical, but usually if they aren't changing, they aren't hurting you.  New moles don't have to be a problem either.  New and similar to everything else is ok.  New and different is worth a biopsy.  My institution has been doing a clinical study with mole mapping.  Not sure their numbers now, but a couple of years ago they had mapped over 4000 moles.  Over a several year period, 98% of those moles were stable and therefore not biopsied.  I've had it done, but I opted out in favor of basic photographs.  I've had 3 primaries, but I don't have dystplastic nevus syndrome – not enough moles.  Most things on me are stable at this point in time.  When I was doing it years ago, it was covered by my insurance.  Actually, I'm not even sure my institution billed for it but I don't remember for certain.  How it works now is beyond me.  But it seems like something that would be worth checking out with all the biopsies you've had.

                                    Good luck on finding a new comfort zone.  I truthfully don't rely on my doc to find my primaries, I know my body best and I know what doesn't seem right.  I like having a second pair of eyes, but when it comes right down to it, I decide if we biopsy or not.  Having lots of moles does make things more challenging.

                                    You can do a search for cutaneous oncologists – they are skin cancer specialists.  Some dermatologists may be as well, but they tend to advertise as such.  In the end, though, it is where you feel the most comfortable.  If you don't work well with a doctor, it doesn't matter how good (s)he is at their job.  It's about finding someone who will work WITH you and treat you like you are a valued team member.  If your derm provides that, then that sounds good to me.  However, you might still want to investigate mole mapping as a way to decrease biopsies.

                                    Janner

                                      Cindy33
                                      Participant

                                        Thank you very much. This is very helpful.

                                        Cindy

                                        Cindy33
                                        Participant

                                          Thank you very much. This is very helpful.

                                          Cindy

                                          Cindy33
                                          Participant

                                            Thank you very much. This is very helpful.

                                            Cindy

                                          Janner
                                          Participant

                                            It sounds like you may have dysplastic nevus syndrome.  Mole mapping was designed for someone like you.  The idea is they take digital pictures at every visit.  The images are then compared to previous images via software and/or doctor.  Anything showing change is candidate for biopsy.   The point of doing these very detailed comparisons is to eliminate unnecessary biopsies.  Many moles may be atypical, but usually if they aren't changing, they aren't hurting you.  New moles don't have to be a problem either.  New and similar to everything else is ok.  New and different is worth a biopsy.  My institution has been doing a clinical study with mole mapping.  Not sure their numbers now, but a couple of years ago they had mapped over 4000 moles.  Over a several year period, 98% of those moles were stable and therefore not biopsied.  I've had it done, but I opted out in favor of basic photographs.  I've had 3 primaries, but I don't have dystplastic nevus syndrome – not enough moles.  Most things on me are stable at this point in time.  When I was doing it years ago, it was covered by my insurance.  Actually, I'm not even sure my institution billed for it but I don't remember for certain.  How it works now is beyond me.  But it seems like something that would be worth checking out with all the biopsies you've had.

                                            Good luck on finding a new comfort zone.  I truthfully don't rely on my doc to find my primaries, I know my body best and I know what doesn't seem right.  I like having a second pair of eyes, but when it comes right down to it, I decide if we biopsy or not.  Having lots of moles does make things more challenging.

                                            You can do a search for cutaneous oncologists – they are skin cancer specialists.  Some dermatologists may be as well, but they tend to advertise as such.  In the end, though, it is where you feel the most comfortable.  If you don't work well with a doctor, it doesn't matter how good (s)he is at their job.  It's about finding someone who will work WITH you and treat you like you are a valued team member.  If your derm provides that, then that sounds good to me.  However, you might still want to investigate mole mapping as a way to decrease biopsies.

                                            Janner

                                            ALM
                                            Participant

                                              Hi Cindy

                                              Nothing we do to save our lives is ever 'Overkill' – go with your gut feel and do whatever necessary.

                                              I have only recently started researching my disease and if I may, I would like to ask a question here on your thread – it is relevant so I don't feel I would be hijacking your post.

                                              I have read somewhere that biopsies are discouraged and they advocate the exclusion method (ie rather remove the whole mole straight away than have it biopsied)

                                              Is this true and and why do they recommend this.

                                              Thank you for your post Cindy – I have now learnt that there can be more than one primary – shew – so much to absorb.

                                              I wish you the very best of luck and my you stay Stage 1 forever!

                                              Regards

                                              Laura

                                              ALM
                                              Participant

                                                Hi Cindy

                                                Nothing we do to save our lives is ever 'Overkill' – go with your gut feel and do whatever necessary.

                                                I have only recently started researching my disease and if I may, I would like to ask a question here on your thread – it is relevant so I don't feel I would be hijacking your post.

                                                I have read somewhere that biopsies are discouraged and they advocate the exclusion method (ie rather remove the whole mole straight away than have it biopsied)

                                                Is this true and and why do they recommend this.

                                                Thank you for your post Cindy – I have now learnt that there can be more than one primary – shew – so much to absorb.

                                                I wish you the very best of luck and my you stay Stage 1 forever!

                                                Regards

                                                Laura

                                                  Cindy33
                                                  Participant

                                                    Thank s Laura. I hope you are doing well.

                                                    Cindy33
                                                    Participant

                                                      Thank s Laura. I hope you are doing well.

                                                      Cindy33
                                                      Participant

                                                        Thank s Laura. I hope you are doing well.

                                                        Janner
                                                        Participant

                                                          Partial biopsies are not recommended, but there is a time and a place for them.  Large lesions on the face or a very visible location might warrant a partial biopsy when complete removal might be disfiguring.  It's better to take a small portion of it to know if it is something of concern that to disfigure someone and then find out it was totally benign.  Most doctors who do biopsies try to remove the entire mole in the biopsy.  This allows complete analysis of all available tissue so the best diagnosis can be given.  Excisional biopsies are great, but they are overkill for the vast majority of biopsies.  They require much more time, stitches and healing (and $$) and create the largest scars.  However, if you are very certain a lesion is MM, it may be the way to go.  Many doctors prefer shave biopsies.  Shave biopsies work well for wider lesions, they are fast and require no stitches.  However they may cut through the depth of a mole and compromise staging.  (I also think they are the most painful healing).  Punch biopsies work well for lesions up to 6mm wide, or so.  You can basically remove the entire mole and you get sufficient depth to allow accurate staging.  Each biopsy type has its plusses and minuses.  Each mole and mole location is different.  There is no hard and fast rule for which biopsy type to do on every lesion.  I prefer discussing all the pros and cons with my doctor for each lesion. 

                                                          For me, I no longer allow shave biopsies on anything remotely related to melanoma.  I mostly have punch biopsies but my last changing mole that was removed was done with an excisional biopsy and conservative (3mm) margins.  I was certain it wasn't melanoma YET, but it was similar enough to my second melanoma to cause concern about where it was headed.

                                                          Janner
                                                          Participant

                                                            Partial biopsies are not recommended, but there is a time and a place for them.  Large lesions on the face or a very visible location might warrant a partial biopsy when complete removal might be disfiguring.  It's better to take a small portion of it to know if it is something of concern that to disfigure someone and then find out it was totally benign.  Most doctors who do biopsies try to remove the entire mole in the biopsy.  This allows complete analysis of all available tissue so the best diagnosis can be given.  Excisional biopsies are great, but they are overkill for the vast majority of biopsies.  They require much more time, stitches and healing (and $$) and create the largest scars.  However, if you are very certain a lesion is MM, it may be the way to go.  Many doctors prefer shave biopsies.  Shave biopsies work well for wider lesions, they are fast and require no stitches.  However they may cut through the depth of a mole and compromise staging.  (I also think they are the most painful healing).  Punch biopsies work well for lesions up to 6mm wide, or so.  You can basically remove the entire mole and you get sufficient depth to allow accurate staging.  Each biopsy type has its plusses and minuses.  Each mole and mole location is different.  There is no hard and fast rule for which biopsy type to do on every lesion.  I prefer discussing all the pros and cons with my doctor for each lesion. 

                                                            For me, I no longer allow shave biopsies on anything remotely related to melanoma.  I mostly have punch biopsies but my last changing mole that was removed was done with an excisional biopsy and conservative (3mm) margins.  I was certain it wasn't melanoma YET, but it was similar enough to my second melanoma to cause concern about where it was headed.

                                                            Janner
                                                            Participant

                                                              Partial biopsies are not recommended, but there is a time and a place for them.  Large lesions on the face or a very visible location might warrant a partial biopsy when complete removal might be disfiguring.  It's better to take a small portion of it to know if it is something of concern that to disfigure someone and then find out it was totally benign.  Most doctors who do biopsies try to remove the entire mole in the biopsy.  This allows complete analysis of all available tissue so the best diagnosis can be given.  Excisional biopsies are great, but they are overkill for the vast majority of biopsies.  They require much more time, stitches and healing (and $$) and create the largest scars.  However, if you are very certain a lesion is MM, it may be the way to go.  Many doctors prefer shave biopsies.  Shave biopsies work well for wider lesions, they are fast and require no stitches.  However they may cut through the depth of a mole and compromise staging.  (I also think they are the most painful healing).  Punch biopsies work well for lesions up to 6mm wide, or so.  You can basically remove the entire mole and you get sufficient depth to allow accurate staging.  Each biopsy type has its plusses and minuses.  Each mole and mole location is different.  There is no hard and fast rule for which biopsy type to do on every lesion.  I prefer discussing all the pros and cons with my doctor for each lesion. 

                                                              For me, I no longer allow shave biopsies on anything remotely related to melanoma.  I mostly have punch biopsies but my last changing mole that was removed was done with an excisional biopsy and conservative (3mm) margins.  I was certain it wasn't melanoma YET, but it was similar enough to my second melanoma to cause concern about where it was headed.

                                                            ALM
                                                            Participant

                                                              Hi Cindy

                                                              Nothing we do to save our lives is ever 'Overkill' – go with your gut feel and do whatever necessary.

                                                              I have only recently started researching my disease and if I may, I would like to ask a question here on your thread – it is relevant so I don't feel I would be hijacking your post.

                                                              I have read somewhere that biopsies are discouraged and they advocate the exclusion method (ie rather remove the whole mole straight away than have it biopsied)

                                                              Is this true and and why do they recommend this.

                                                              Thank you for your post Cindy – I have now learnt that there can be more than one primary – shew – so much to absorb.

                                                              I wish you the very best of luck and my you stay Stage 1 forever!

                                                              Regards

                                                              Laura

                                                          Viewing 11 reply threads
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