trippettl

Hi,

I am SO sympathetic to your quest to get precise definitions for your case!  I know it feels like you need an advanced degree yourself to figure out your diagnoses!

I know I'm "late to the party" on this, but in any case, I wanted to second the point that a previous respondent made to you.  Yes–get a second opinion from a melanoma clinic!  If you don't know where to find one, I'm sure the MRF can help you.  I know of several myself:  Mass General in Boston, UCSF, Sloan Kettering in NYC, MD Anderson in Houston, and the Johns Hopkins Melanoma and Cutaneous Oncology Group are a few.  The last clinic is the one I used and even though Hopkins is huge, I felt that my case was handled very well.  Eventually, the doc I was seeing left and I went back to seeing my local dermatologist because I'd been with her for years and she excised my first melanoma.

All of my melanomas (5) have been caught early and all have been"in situ."  I have had further excisions of all of them until the surgeon hit "clean" margins.  I've also had further excisions on any and all dysplasias.

One thing that I wanted to share with you is that there is an ongoing debate among dermatologists about whether or not to excise "dysplastic nevi," if they're considered "mild."  Those, as you probably know by now, are moles that *may* become melanomas, or may remain dysplastic forever.  Some researchers balk at the idea that any mild-appearing (and how can they know just by looking with their naked eyes?) dysplasias should be biopsied at all, saying that patients are getting cut too much.  I can't tell you how vehementally I disagree with this opinion–I think it's totally irresponsible.

So far, I have had 280+ moles and freckles removed (that's over 12 years).  Of those, about 33% have had some degree of dysplasia, and I ahve had all of them excised with a punch biospy first and then with follow-up outpatient surgeries.  I did have the Mohs procedure (the "skin shavin" technique) once because I had a "severe displaysia" (just shy of a melanoma) on a toe and there was no skin to stich together.

I know that I've been extremely lucky.  I am absoutely vigilent with covering up and hats and sunscreen.  I am considering genetic testing for the BRAF gene but I'm not sure if my insurance co. will cover that (or set off alarm bells).

Please get in touch with me to let me know how you're doing or if you have anything else to share about all of this.  It's terrifying, but there is LOTS of support and knowledge out there to help you on this crazy journey!  I send you all best thoughts and wishes!!  Laurie

Hi,

I am SO sympathetic to your quest to get precise definitions for your case!  I know it feels like you need an advanced degree yourself to figure out your diagnoses!

I know I'm "late to the party" on this, but in any case, I wanted to second the point that a previous respondent made to you.  Yes–get a second opinion from a melanoma clinic!  If you don't know where to find one, I'm sure the MRF can help you.  I know of several myself:  Mass General in Boston, UCSF, Sloan Kettering in NYC, MD Anderson in Houston, and the Johns Hopkins Melanoma and Cutaneous Oncology Group are a few.  The last clinic is the one I used and even though Hopkins is huge, I felt that my case was handled very well.  Eventually, the doc I was seeing left and I went back to seeing my local dermatologist because I'd been with her for years and she excised my first melanoma.

All of my melanomas (5) have been caught early and all have been"in situ."  I have had further excisions of all of them until the surgeon hit "clean" margins.  I've also had further excisions on any and all dysplasias.

One thing that I wanted to share with you is that there is an ongoing debate among dermatologists about whether or not to excise "dysplastic nevi," if they're considered "mild."  Those, as you probably know by now, are moles that *may* become melanomas, or may remain dysplastic forever.  Some researchers balk at the idea that any mild-appearing (and how can they know just by looking with their naked eyes?) dysplasias should be biopsied at all, saying that patients are getting cut too much.  I can't tell you how vehementally I disagree with this opinion–I think it's totally irresponsible.

So far, I have had 280+ moles and freckles removed (that's over 12 years).  Of those, about 33% have had some degree of dysplasia, and I ahve had all of them excised with a punch biospy first and then with follow-up outpatient surgeries.  I did have the Mohs procedure (the "skin shavin" technique) once because I had a "severe displaysia" (just shy of a melanoma) on a toe and there was no skin to stich together.

I know that I've been extremely lucky.  I am absoutely vigilent with covering up and hats and sunscreen.  I am considering genetic testing for the BRAF gene but I'm not sure if my insurance co. will cover that (or set off alarm bells).

Please get in touch with me to let me know how you're doing or if you have anything else to share about all of this.  It's terrifying, but there is LOTS of support and knowledge out there to help you on this crazy journey!  I send you all best thoughts and wishes!!  Laurie

Hi,

I am SO sympathetic to your quest to get precise definitions for your case!  I know it feels like you need an advanced degree yourself to figure out your diagnoses!

I know I'm "late to the party" on this, but in any case, I wanted to second the point that a previous respondent made to you.  Yes–get a second opinion from a melanoma clinic!  If you don't know where to find one, I'm sure the MRF can help you.  I know of several myself:  Mass General in Boston, UCSF, Sloan Kettering in NYC, MD Anderson in Houston, and the Johns Hopkins Melanoma and Cutaneous Oncology Group are a few.  The last clinic is the one I used and even though Hopkins is huge, I felt that my case was handled very well.  Eventually, the doc I was seeing left and I went back to seeing my local dermatologist because I'd been with her for years and she excised my first melanoma.

All of my melanomas (5) have been caught early and all have been"in situ."  I have had further excisions of all of them until the surgeon hit "clean" margins.  I've also had further excisions on any and all dysplasias.

One thing that I wanted to share with you is that there is an ongoing debate among dermatologists about whether or not to excise "dysplastic nevi," if they're considered "mild."  Those, as you probably know by now, are moles that *may* become melanomas, or may remain dysplastic forever.  Some researchers balk at the idea that any mild-appearing (and how can they know just by looking with their naked eyes?) dysplasias should be biopsied at all, saying that patients are getting cut too much.  I can't tell you how vehementally I disagree with this opinion–I think it's totally irresponsible.

So far, I have had 280+ moles and freckles removed (that's over 12 years).  Of those, about 33% have had some degree of dysplasia, and I ahve had all of them excised with a punch biospy first and then with follow-up outpatient surgeries.  I did have the Mohs procedure (the "skin shavin" technique) once because I had a "severe displaysia" (just shy of a melanoma) on a toe and there was no skin to stich together.

I know that I've been extremely lucky.  I am absoutely vigilent with covering up and hats and sunscreen.  I am considering genetic testing for the BRAF gene but I'm not sure if my insurance co. will cover that (or set off alarm bells).

Please get in touch with me to let me know how you're doing or if you have anything else to share about all of this.  It's terrifying, but there is LOTS of support and knowledge out there to help you on this crazy journey!  I send you all best thoughts and wishes!!  Laurie