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Interested in hearing from others with multiple primaries and FAMMM/Atypical Mole Syndrome

Forums Cutaneous Melanoma Community Interested in hearing from others with multiple primaries and FAMMM/Atypical Mole Syndrome

  • Post
    Radhe
    Participant

      Hi all,
      I'll start by saying I hope this finds you as well and content as you can be.

      I am looking to connect with others/hear experiences about individuals who have had multiple primary melanomas and/or atypical mole syndrome; and how things have gone for you/what you have done to cope.

      Hi all,
      I'll start by saying I hope this finds you as well and content as you can be.

      I am looking to connect with others/hear experiences about individuals who have had multiple primary melanomas and/or atypical mole syndrome; and how things have gone for you/what you have done to cope.

      My brief history is that my first diagnosis was in 2009 with a stage 1 (.43 breslow/clark level III) on my back.  WLE came back with clean margins, but due to some discomfort on my part with the first dermatologist I saw who made the original diagnosis, I transferred my care to a nationally known private hospital that had melanoma specialists and cutaneous oncologists. There I underwent about 15 more biopsies since August 2009, that came back with things ranging from moderately atypical nevi to another melanoma (in situ). I've had 6 WLE's to manage the more severe atypical and the second primary melanoma. 

      In an effort to do more than just "stay out of the sun" to prevent more melanoma, I sought the integration of a naturopath on my healthcare team. I am all for integrated health care and think there are pros and cons to this just like everything else, so I'm not trying to spur a big debate on that topic! What I will say is the naturpath zealously drew what seemed like gallons of my blood and had all these marker tests done. One, a TA-90 glycoprotein that is associated with immune response to melanoma, came back "abnormal."  I went out of my mind researching the sensitivity and specificity of this test, have read everything on PubMed, – even meeting with an oncologist who was involved in research to develop the test. Basically, no one can tell me why it is abnormal or if it being abnormal means anything because the research lines were pretty much dropped in the mid 2000’s.

      I hate ambiguity, but am resolved that I will have to suck it up. It is NOT an FDA approved test and the naturopath probably did not have any business ordering it, but here I am with this stupid result.  It has been more than a year now (I stopped seeing the naturpath!) It makes me crazy because data on survival rates for people with positive TA 90 are not good, and the test was developed to detect “occult metastasis.” Like I need any more motivation to worry that my headache is not just a headache and is actually a tumor after having cancer 2X by age 32!

      So now, since I have the genetic stuff that goes along with the atypical mole syndrome, two melanomas, this stupid positive TA 90, and many, many strange looking moles, I spin into this place where I can’t help but feel like this is chronic, and will someday take me out.  I’m not trying to be negative (PLEASE no power of positive thinking comments) – I am just honestly scared and it is starting to get the better of me the longer time wears on and the more things I have to have biopsied and re-excised.  I am surrendering to the fact that this is just how life will be, but I thought reaching out to those who have had to deal with multiple primary melanomas and/or atypical mole syndrome would be helpful to get tips on how y’all are coping with an ongoing issue.  Thoughts?

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    • Replies
        Carrie
        Participant

          My mom and sister both have multiple primary melanomas (my mom has had 4, my sister 2).  My sister and I both have atypical mole syndrome (I've lost count how many atypical moles my sister has had removed).  I've had 4 atypical moles removed and countless biopsies, no melanoma yet. 

          With that being said, all three of us just take it in stride.  There is nothing that we can do about our situation, except skin checks on our own and seeing our dermatologists regularly .  Right now, all three of us go every six months (unless we find something questionable, then we make an earlier appointment).  I admit, I can be a little fanatical about checking my moles for change at times, but I think that's par for the course :)

          Carrie

          mom stage IIIB (4 primaries)

          sister stage IA (2 primaries)

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            jrjrjr
            Participant

              Carrie.

              I have had five atyplical moles.

              I am concerned about atypical mole syndrome.  I know genetic testing is required.   Does five atypical moles ring alarm for atypical mole syndrome?  

              jrjrjr

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              jrjrjr
              Participant

                Does it matter if the atypical moles are mild, moderate or severe?

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                jrjrjr
                Participant

                  Does it matter if the atypical moles are mild, moderate or severe?

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                  jrjrjr
                  Participant

                    Does it matter if the atypical moles are mild, moderate or severe?

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                    jrjrjr
                    Participant

                      Carrie.

                      I have had five atyplical moles.

                      I am concerned about atypical mole syndrome.  I know genetic testing is required.   Does five atypical moles ring alarm for atypical mole syndrome?  

                      jrjrjr

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                      jrjrjr
                      Participant

                        Carrie.

                        I have had five atyplical moles.

                        I am concerned about atypical mole syndrome.  I know genetic testing is required.   Does five atypical moles ring alarm for atypical mole syndrome?  

                        jrjrjr

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                      Carrie
                      Participant

                        My mom and sister both have multiple primary melanomas (my mom has had 4, my sister 2).  My sister and I both have atypical mole syndrome (I've lost count how many atypical moles my sister has had removed).  I've had 4 atypical moles removed and countless biopsies, no melanoma yet. 

                        With that being said, all three of us just take it in stride.  There is nothing that we can do about our situation, except skin checks on our own and seeing our dermatologists regularly .  Right now, all three of us go every six months (unless we find something questionable, then we make an earlier appointment).  I admit, I can be a little fanatical about checking my moles for change at times, but I think that's par for the course :)

                        Carrie

                        mom stage IIIB (4 primaries)

                        sister stage IA (2 primaries)

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                        Janner
                        Participant

                          I've had 3 primaries, but don't have the atypical mole syndrome.  All my biopsies to date have been atypical, but I have less than 50 moles so don't "qualify" for the syndrome.  I do, however, have the CDKN2A mutation for melanoma.  I was given a 76% lifetime risk of getting melanoma with this defect. 

                          Two things.  I would suggest you find someone who will photograph your moles.  With the syndrome, it is obvious that most of your moles are atypical to some degree.  But if you only biopsy the moles that CHANGE, you will be saving yourself a ton of cutting.  Find someone who does mole mapping where they actively compare moles to previous pics at each visit, or body photography where you have a baseline set of photos you can compare against.  I've had both at different times.  I have to say it helps to have an "independent eye".  Those photographs give me a lot of comfort knowing that I have something to compare against.  Sometimes, my imaginations gets the best of me and I notice a new mole or I think something has changed.  Pull out the photos and…. nothing.  It keeps me sane.

                          Second.  People with multiple primaries actually have better survival statistics than those with only one.  Several studies have shown this.

                          The TA-90 test was never approved because it was not reliable.  Too many false positives and negatives.  So just because you tested positive at one time means nothing now.  I wouldn't put any more anxiety into that one.  If it was really predictive for melanoma mets, it would have been approved.

                          Best wishes,

                          Janner

                          3 MM primaries, stage I since 1992 (age 29 at first diagnosis)

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                          Janner
                          Participant

                            I've had 3 primaries, but don't have the atypical mole syndrome.  All my biopsies to date have been atypical, but I have less than 50 moles so don't "qualify" for the syndrome.  I do, however, have the CDKN2A mutation for melanoma.  I was given a 76% lifetime risk of getting melanoma with this defect. 

                            Two things.  I would suggest you find someone who will photograph your moles.  With the syndrome, it is obvious that most of your moles are atypical to some degree.  But if you only biopsy the moles that CHANGE, you will be saving yourself a ton of cutting.  Find someone who does mole mapping where they actively compare moles to previous pics at each visit, or body photography where you have a baseline set of photos you can compare against.  I've had both at different times.  I have to say it helps to have an "independent eye".  Those photographs give me a lot of comfort knowing that I have something to compare against.  Sometimes, my imaginations gets the best of me and I notice a new mole or I think something has changed.  Pull out the photos and…. nothing.  It keeps me sane.

                            Second.  People with multiple primaries actually have better survival statistics than those with only one.  Several studies have shown this.

                            The TA-90 test was never approved because it was not reliable.  Too many false positives and negatives.  So just because you tested positive at one time means nothing now.  I wouldn't put any more anxiety into that one.  If it was really predictive for melanoma mets, it would have been approved.

                            Best wishes,

                            Janner

                            3 MM primaries, stage I since 1992 (age 29 at first diagnosis)

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                            lhaley
                            Participant

                              I have had 6 primaries and also have been diagnosed with dysplastic nevus syndrome.  My journey started in 1979!  I've also had more moles than I can count removed along with way too many wide excisions. I do have the photo's that Janner talked about and they are compared to my moles when I feel there is a change.

                              I'm going to a new derm because we have moved and he took his own pictures after comparing my old ones. Now when I go he has them on his computer screen and can enlarge them as needed.  Actually I have an appointment in a few hours with him.  I have gone every 3 months for over 30 years. There may have been a few years when I didn't have issues and went to 6 months spacing. 

                              My original mel did recur on the scar line 27 years later so you do have to remain vigilant! However, it sounds as if yours have all been found very thin.   I did not change my life style and instead used it as a warning to go and enjoy my life because you never know what will happen. I'm not saying that I eat horrible (I don't) but I also did not change. Emotionally I would have my ups and downs when I would have a new mel come along but I refused to let the thoughts drag me down for long.

                              This website while is great and has really good and current info can also be a scary place for those with thin melanomas. Most of the people who post here have advanced disease. We do have a few Stage I folks who have a wealth of knowledge and help newcomers. Yours will hopefully never recur and while you need to be much more sun careful you need to be careful of being overtaken with the fear. 

                              Linda

                              Stage IV stable

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                              lhaley
                              Participant

                                I have had 6 primaries and also have been diagnosed with dysplastic nevus syndrome.  My journey started in 1979!  I've also had more moles than I can count removed along with way too many wide excisions. I do have the photo's that Janner talked about and they are compared to my moles when I feel there is a change.

                                I'm going to a new derm because we have moved and he took his own pictures after comparing my old ones. Now when I go he has them on his computer screen and can enlarge them as needed.  Actually I have an appointment in a few hours with him.  I have gone every 3 months for over 30 years. There may have been a few years when I didn't have issues and went to 6 months spacing. 

                                My original mel did recur on the scar line 27 years later so you do have to remain vigilant! However, it sounds as if yours have all been found very thin.   I did not change my life style and instead used it as a warning to go and enjoy my life because you never know what will happen. I'm not saying that I eat horrible (I don't) but I also did not change. Emotionally I would have my ups and downs when I would have a new mel come along but I refused to let the thoughts drag me down for long.

                                This website while is great and has really good and current info can also be a scary place for those with thin melanomas. Most of the people who post here have advanced disease. We do have a few Stage I folks who have a wealth of knowledge and help newcomers. Yours will hopefully never recur and while you need to be much more sun careful you need to be careful of being overtaken with the fear. 

                                Linda

                                Stage IV stable

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                                Radhe
                                Participant

                                  Thanks for the info – and Janner, great link – thanks for sharing that. It is helpful to hear from others who are dealing with this sucessfully on an ongoing basis.

                                  Indeed, I have had mole photos taken not long after the first diagnosis and have digital images as well.  They are helpful, however, even with these photos my moles change quickly and frequently, so I have had a high number of biopsies. I feel very confident that I have a good healthcare team in place and have done a lot of research and networking to find good docs. Survival rates in people with multiple primaries are higher, as I understand it, due to increases in dilligance of follow up care – and you can't get much more neurotic than I am, so I feel good on that front too.

                                   

                                  Anyone have issues with fatigue on an ongoing basis, even with early stage thin melanomas? After WLE's I am wiped out, even with small sites, and feel a little like a wuss sometimes when I'm in bed for 3 days after 20 stitches.  Even just generally, I have been a lot more tired in the past few years. It is one of those random symptoms that my docs just sort of shrug at.

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                                    Janner
                                    Participant

                                      Have you considered that you just may be depressed? (Melanoma has been known to do that to people ;)  I've had plenty of WLE's and have actually gone back to work after half of them.  However, after my 3rd primary diagnosis, I started researching obsessively. (There was no internet and no books available to me when I was originally diagnosed).   I became obsessed with research.  I also started having problems with fatigue.  I finally realized that while I seemed to be operating normally, the fatigue issue was actually depression in me.  I tried anti-depressants for about 8 or 9 months and it got me back on track.  I have to say I never felt depressed, I just saw the signs with the fatigue and a lack of ability to concentrate as well.  Those were my symptoms, not anything obvious with moodiness.

                                      Best wishes,

                                      Janner

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                                      Janner
                                      Participant

                                        Have you considered that you just may be depressed? (Melanoma has been known to do that to people ;)  I've had plenty of WLE's and have actually gone back to work after half of them.  However, after my 3rd primary diagnosis, I started researching obsessively. (There was no internet and no books available to me when I was originally diagnosed).   I became obsessed with research.  I also started having problems with fatigue.  I finally realized that while I seemed to be operating normally, the fatigue issue was actually depression in me.  I tried anti-depressants for about 8 or 9 months and it got me back on track.  I have to say I never felt depressed, I just saw the signs with the fatigue and a lack of ability to concentrate as well.  Those were my symptoms, not anything obvious with moodiness.

                                        Best wishes,

                                        Janner

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                                      Radhe
                                      Participant

                                        Thanks for the info – and Janner, great link – thanks for sharing that. It is helpful to hear from others who are dealing with this sucessfully on an ongoing basis.

                                        Indeed, I have had mole photos taken not long after the first diagnosis and have digital images as well.  They are helpful, however, even with these photos my moles change quickly and frequently, so I have had a high number of biopsies. I feel very confident that I have a good healthcare team in place and have done a lot of research and networking to find good docs. Survival rates in people with multiple primaries are higher, as I understand it, due to increases in dilligance of follow up care – and you can't get much more neurotic than I am, so I feel good on that front too.

                                         

                                        Anyone have issues with fatigue on an ongoing basis, even with early stage thin melanomas? After WLE's I am wiped out, even with small sites, and feel a little like a wuss sometimes when I'm in bed for 3 days after 20 stitches.  Even just generally, I have been a lot more tired in the past few years. It is one of those random symptoms that my docs just sort of shrug at.

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                                        MichaelFL
                                        Participant

                                          Hi,

                                          I see that you have considered Mole Mapping/ Full Body Photography. This may help you so you do not have to undergo so many biopsies in the future. Remember too, since your biopsies came back ranging from moderately atypical nevi and one melanoma in situ, you are still stage 1 which is good as far as melanoma goes.

                                          A little history on myself: I was initially diagnosed September 2008, and to date I have had two stage 1b melanomas and one moderately atypical mole removed.

                                          I have hundreds of moles, but I decided not to go the mole mapping/photography route as I feel I know my body better than anyone. There were/are really only six moles (now five) I am really concerned about at this time anyway, so I watch them closely and use my digital camera and photograph them every few months looking for change. I had one of the six removed several months ago and it came back moderately atypical and a WLE was performed. My derm leaves mildly atypical alone and watches for change. He re-excises moderate and severe. Some derms even leave moderately atypical and watch them for change, and remove only severely atypical ones. (seems your doctor goes this route)

                                          I remember researching the TA-90 test some time ago. I recall one of the studies that was all over the internet which showed that of the 56 patients, there were 14 false-positive and 13 false-negative results, (which was a significant improvement over other malignant tumor marker results), but still not good enough to be FDA approved. So, I decided not to put too much into the TA-90 test in terms of reliability. You shouldn’t either!

                                          Glad you stopped seeing the naturopath too. It seemed perhaps they were feeding off of your emotions.

                                          I guess for me the bottom line is that I know myself better than any doctor, and I have decided not to let melanoma run my life. I got married last year and I also have two beautiful grandchildren. So YOU try to relax, as the stress and depression of all this is most likely what is giving you your headaches and not brain mets!

                                          Be cautious what you read here as well, as all stages are covered here on this forum.

                                          Michael-stage 1b age 46 and living life with two primaries and one moderately dysplastic nevus.

                                          P.S. As you mentioned in your second post, it seems you are depressed. Stress and/or depression will wear on you and make you fatigued. And so much more! Perhaps some anti-anxiety/ depression meds are in order? (they are not the same thing) I recall when first diagnosed it hit me like a ton of bricks too. Although I did not become depressed, I did find myself obsessed with research. For me personally, the more I know about something the better I feel. I know many are not that way though.

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                                            Radhe
                                            Participant

                                              Michael –

                                              Glad you are doing well.  And yes, I am also in the camp of the more I know the better I feel, but knowledge is double-edged to be sure. And I appreciate your caution about boards like this. Indeed I have vacillated between finding them at times more helpful and at times less helpful.

                                              Just a few things: I have body photography/ mole mapping. The issue is that my moles tend to change and grow rapidly so a high number of biopsies are still in order. Also, my first primary was a .43/clark III, my 2nd primary was in situ, and I've had more moderate to severe nevi taken off than I can count with 6 needing WLE's. (Severe)

                                              I appreciate the discussion about the impact of mental health and stress on well being and energy levels. I am (ironically) a clinical health psychologist, so I know a little bit about all that, or at least enough to have had a doctorate conferred. (That is also double-edged as I am sensitive to how much subjectivity there is in medicine). I have also been to the depression rodeo, so to speak, and this is not that.   I have a strong mindfulness meditation practice and a good amount of understanding about my feeling and emotional tones. There is, of course, a bidirectional relationship, but this seems like something all on its own separate from mood, and was just curious if any others had experienced something similar.

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                                              alicia
                                              Participant
                                                Hi there so sorry you are part of our club but glad we have so many knowledgeable kind hearted friends on this site. People that celebrate during good times and cry with us during hard times. I too have multiple primary melanomas 2 of which are more advanced. Stage 3a with 3 primaries. I have a genetic mutation for melanoma but my oncologist says I don’t present with the phenotype (meaning I don’t have hardly any moles). All of my melanoma were amelanotic and was a new skin lesion none presented in a mole. I’m so glad all of yours have been early that is something to celebrate:)

                                                With the tiredness a d fatigue I just wonder if you’ve had your thyroid labs checked. The thyroid can cause a lot of the symptoms you just mentioned. After I did interferon I developed secondary hashimotos thyroiditis and had got go on synthroid until my throid regulated itself. I hope this helps and I hope you continue to do well:)

                                                Alicia stage 3a w/ 3 primaries

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                                                alicia
                                                Participant
                                                  Hi there so sorry you are part of our club but glad we have so many knowledgeable kind hearted friends on this site. People that celebrate during good times and cry with us during hard times. I too have multiple primary melanomas 2 of which are more advanced. Stage 3a with 3 primaries. I have a genetic mutation for melanoma but my oncologist says I don’t present with the phenotype (meaning I don’t have hardly any moles). All of my melanoma were amelanotic and was a new skin lesion none presented in a mole. I’m so glad all of yours have been early that is something to celebrate:)

                                                  With the tiredness a d fatigue I just wonder if you’ve had your thyroid labs checked. The thyroid can cause a lot of the symptoms you just mentioned. After I did interferon I developed secondary hashimotos thyroiditis and had got go on synthroid until my throid regulated itself. I hope this helps and I hope you continue to do well:)

                                                  Alicia stage 3a w/ 3 primaries

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                                                  Radhe
                                                  Participant

                                                    Michael –

                                                    Glad you are doing well.  And yes, I am also in the camp of the more I know the better I feel, but knowledge is double-edged to be sure. And I appreciate your caution about boards like this. Indeed I have vacillated between finding them at times more helpful and at times less helpful.

                                                    Just a few things: I have body photography/ mole mapping. The issue is that my moles tend to change and grow rapidly so a high number of biopsies are still in order. Also, my first primary was a .43/clark III, my 2nd primary was in situ, and I've had more moderate to severe nevi taken off than I can count with 6 needing WLE's. (Severe)

                                                    I appreciate the discussion about the impact of mental health and stress on well being and energy levels. I am (ironically) a clinical health psychologist, so I know a little bit about all that, or at least enough to have had a doctorate conferred. (That is also double-edged as I am sensitive to how much subjectivity there is in medicine). I have also been to the depression rodeo, so to speak, and this is not that.   I have a strong mindfulness meditation practice and a good amount of understanding about my feeling and emotional tones. There is, of course, a bidirectional relationship, but this seems like something all on its own separate from mood, and was just curious if any others had experienced something similar.

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                                                  MichaelFL
                                                  Participant

                                                    Hi,

                                                    I see that you have considered Mole Mapping/ Full Body Photography. This may help you so you do not have to undergo so many biopsies in the future. Remember too, since your biopsies came back ranging from moderately atypical nevi and one melanoma in situ, you are still stage 1 which is good as far as melanoma goes.

                                                    A little history on myself: I was initially diagnosed September 2008, and to date I have had two stage 1b melanomas and one moderately atypical mole removed.

                                                    I have hundreds of moles, but I decided not to go the mole mapping/photography route as I feel I know my body better than anyone. There were/are really only six moles (now five) I am really concerned about at this time anyway, so I watch them closely and use my digital camera and photograph them every few months looking for change. I had one of the six removed several months ago and it came back moderately atypical and a WLE was performed. My derm leaves mildly atypical alone and watches for change. He re-excises moderate and severe. Some derms even leave moderately atypical and watch them for change, and remove only severely atypical ones. (seems your doctor goes this route)

                                                    I remember researching the TA-90 test some time ago. I recall one of the studies that was all over the internet which showed that of the 56 patients, there were 14 false-positive and 13 false-negative results, (which was a significant improvement over other malignant tumor marker results), but still not good enough to be FDA approved. So, I decided not to put too much into the TA-90 test in terms of reliability. You shouldn’t either!

                                                    Glad you stopped seeing the naturopath too. It seemed perhaps they were feeding off of your emotions.

                                                    I guess for me the bottom line is that I know myself better than any doctor, and I have decided not to let melanoma run my life. I got married last year and I also have two beautiful grandchildren. So YOU try to relax, as the stress and depression of all this is most likely what is giving you your headaches and not brain mets!

                                                    Be cautious what you read here as well, as all stages are covered here on this forum.

                                                    Michael-stage 1b age 46 and living life with two primaries and one moderately dysplastic nevus.

                                                    P.S. As you mentioned in your second post, it seems you are depressed. Stress and/or depression will wear on you and make you fatigued. And so much more! Perhaps some anti-anxiety/ depression meds are in order? (they are not the same thing) I recall when first diagnosed it hit me like a ton of bricks too. Although I did not become depressed, I did find myself obsessed with research. For me personally, the more I know about something the better I feel. I know many are not that way though.

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                                                    Sia
                                                    Participant
                                                      Hi. I am also scared and have been for a long time. I was first diagnosed with 2 primary level 1 mels in 1996. I am now 43 years old and am dealing with my 7th primary. All of mine have been under 1mm so I consider myself lucky, but this last one has thrown me for a loop because it looked so benign. I had it removed because it was new. It looked completely different than the other 6. Of course there was no great consistency with the others and how they presented but this last one was especially sneaky.

                                                      I go to the derm at least every 3 months. The doctors I see are great but I am usually the one who finds the mels. It is all about change in my case because all of my moles are irregular.

                                                      I have pictures of my skin but I have so many moles that it is tough to keep track of all of them.

                                                      To help with the horrible anxiety of this syndrome I take anti anxiety meds–lexapro 10 mg and the very occasional Xanax. Also, I am taking an aggressive approach with biopsies. It is not fun, but I have a few moles taken off every 3 months. I have one derm who does a beautiful job with shaving as little as possible so the scars eventually blend in with my cornucopia of spots. I also have heard that people with multiple early stage primaries have decent survival rates– because they are more likely to continue with skin screenings to further early detection. I try to remind myself of this when I start to go negative.

                                                      Also, when I was first diagnosed when I was in my late 20s I had a great team of doctors at the uw in Seattle who got together and told me as a group that I could live a relatively normal life. I would have to expect more primaries but they should continue to be early stage if I stay vigilant with self exams and with derm visits.

                                                      My eating habits over the years has moved from a terrible amount of sugar to a gradually move to more fruit and veg. I try to limit alcohol because it is a depressant and I read that alcohol is connected to an increase in skin cancer.

                                                      Ultimately cancer sucks. It is a very grim club to belong to. Thanks for reaching out to us with multiple primaries.

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                                                      Sia
                                                      Participant
                                                        Hi. I am also scared and have been for a long time. I was first diagnosed with 2 primary level 1 mels in 1996. I am now 43 years old and am dealing with my 7th primary. All of mine have been under 1mm so I consider myself lucky, but this last one has thrown me for a loop because it looked so benign. I had it removed because it was new. It looked completely different than the other 6. Of course there was no great consistency with the others and how they presented but this last one was especially sneaky.

                                                        I go to the derm at least every 3 months. The doctors I see are great but I am usually the one who finds the mels. It is all about change in my case because all of my moles are irregular.

                                                        I have pictures of my skin but I have so many moles that it is tough to keep track of all of them.

                                                        To help with the horrible anxiety of this syndrome I take anti anxiety meds–lexapro 10 mg and the very occasional Xanax. Also, I am taking an aggressive approach with biopsies. It is not fun, but I have a few moles taken off every 3 months. I have one derm who does a beautiful job with shaving as little as possible so the scars eventually blend in with my cornucopia of spots. I also have heard that people with multiple early stage primaries have decent survival rates– because they are more likely to continue with skin screenings to further early detection. I try to remind myself of this when I start to go negative.

                                                        Also, when I was first diagnosed when I was in my late 20s I had a great team of doctors at the uw in Seattle who got together and told me as a group that I could live a relatively normal life. I would have to expect more primaries but they should continue to be early stage if I stay vigilant with self exams and with derm visits.

                                                        My eating habits over the years has moved from a terrible amount of sugar to a gradually move to more fruit and veg. I try to limit alcohol because it is a depressant and I read that alcohol is connected to an increase in skin cancer.

                                                        Ultimately cancer sucks. It is a very grim club to belong to. Thanks for reaching out to us with multiple primaries.

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                                                          Angie A
                                                          Participant

                                                            I'm commenting to join this thread and hopefully receive notification of additional comments.   My first primary (in-situ) melanoma was 2013 and 2nd & 3rd were this year, 2017 (also in-situ) and I've had numerous atypical moles.  I'm  looking for others in similar situation to share ideas for managing, preventing, etc.  I'm trying a healthier lifestyle and excluding sugar from my diet.   

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                                                            Debbiemartis
                                                            Participant

                                                              Hi Angie A

                                                              I came across your post and wanted to see how you are doing.I have multiple primary melanomas and have been looking for options. I would love to hear from you

                                                               

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                                                              IrishLiz
                                                              Participant
                                                                Hi
                                                                Just joined
                                                                First primary diagnosed just a couple of months ago – wise excision then CT scan – huge relief to be told that the skin margins and the CT results were clear (2wreks ago)
                                                                Last week I found a new pink raised lump with red inflammation around it and I’ve just seen the doc today, and been referred to the dermatologist. So I don’t know if this is/ will be ‘multiple orimaries’, but somehow I expect so
                                                                Your question has helped me realise that this is quite common, I’m not alone and I’m not a freak
                                                                Early days, I know, but I’m feeling a bit scared and also wary of letting this take over my life
                                                                Thanks

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                                                              Sia
                                                              Participant
                                                                Hi. I am also scared and have been for a long time. I was first diagnosed with 2 primary level 1 mels in 1996. I am now 43 years old and am dealing with my 7th primary. All of mine have been under 1mm so I consider myself lucky, but this last one has thrown me for a loop because it looked so benign. I had it removed because it was new. It looked completely different than the other 6. Of course there was no great consistency with the others and how they presented but this last one was especially sneaky.

                                                                I go to the derm at least every 3 months. The doctors I see are great but I am usually the one who finds the mels. It is all about change in my case because all of my moles are irregular.

                                                                I have pictures of my skin but I have so many moles that it is tough to keep track of all of them.

                                                                To help with the horrible anxiety of this syndrome I take anti anxiety meds–lexapro 10 mg and the very occasional Xanax. Also, I am taking an aggressive approach with biopsies. It is not fun, but I have a few moles taken off every 3 months. I have one derm who does a beautiful job with shaving as little as possible so the scars eventually blend in with my cornucopia of spots. I also have heard that people with multiple early stage primaries have decent survival rates– because they are more likely to continue with skin screenings to further early detection. I try to remind myself of this when I start to go negative.

                                                                Also, when I was first diagnosed when I was in my late 20s I had a great team of doctors at the uw in Seattle who got together and told me as a group that I could live a relatively normal life. I would have to expect more primaries but they should continue to be early stage if I stay vigilant with self exams and with derm visits.

                                                                My eating habits over the years has moved from a terrible amount of sugar to a gradually move to more fruit and veg. I try to limit alcohol because it is a depressant and I read that alcohol is connected to an increase in skin cancer.

                                                                Ultimately cancer sucks. It is a very grim club to belong to. Thanks for reaching out to us with multiple primaries.

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