› Forums › Cutaneous Melanoma Community › Vulvar Cutaneous Melanoma
- This topic has 12 replies, 2 voices, and was last updated 9 years, 7 months ago by
CHD.
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- October 28, 2015 at 4:30 pm
Hi, just wanting to see if there is anyone out there with vulvar cutaneous melanoma? I have seen posts from several with mucosal-type but wondering about cutaneous. Would love to hear your stories and what you have been treated with, and how you are doing. Thanks for sharing!
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- October 28, 2015 at 7:02 pm
My understanding from my surgeon was that vulvar cutaneous is treated and staged like cutaneous melanoma elsewhere on the body. It therefore has a better prognosis than vulvar mucosal, and the melanoma may have some of the genetic markers found in other cutaneous melanomas that make them receptive to some of the newer drugs (BRAF, etc), which, aside from KIT, mucosal melanoma usually doesn't have.
My own is vulvar, so I can't speak to treatment. You are the first I have met with cutaneous and I would be interested in hearing what your own doctors have told you and recommended too.
Best wishes to you!
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- October 28, 2015 at 7:02 pm
My understanding from my surgeon was that vulvar cutaneous is treated and staged like cutaneous melanoma elsewhere on the body. It therefore has a better prognosis than vulvar mucosal, and the melanoma may have some of the genetic markers found in other cutaneous melanomas that make them receptive to some of the newer drugs (BRAF, etc), which, aside from KIT, mucosal melanoma usually doesn't have.
My own is vulvar, so I can't speak to treatment. You are the first I have met with cutaneous and I would be interested in hearing what your own doctors have told you and recommended too.
Best wishes to you!
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- November 9, 2015 at 4:06 pm
Thank you for your comment. Initially they mis diagnosed as mucosal. No BRAF mutation unfortunately. The tumor was removed and one lymph node positive, the second negative. The recommendation was to not remove remaining lymph. 3 months later on PET and another lymph node positive so had completelymphadanectomy. 3 months out from that. now have metastatic disease in liver and lungs. When stage 3 I was looking at clinical trials involving keytruda. Now stage 4, it's time for keytruda. I really hope stage 3 is no longer a wait and watch recommendation. This seems to be a very aggressive disease and timing is everything. Best of luck to you.
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- November 9, 2015 at 4:06 pm
Thank you for your comment. Initially they mis diagnosed as mucosal. No BRAF mutation unfortunately. The tumor was removed and one lymph node positive, the second negative. The recommendation was to not remove remaining lymph. 3 months later on PET and another lymph node positive so had completelymphadanectomy. 3 months out from that. now have metastatic disease in liver and lungs. When stage 3 I was looking at clinical trials involving keytruda. Now stage 4, it's time for keytruda. I really hope stage 3 is no longer a wait and watch recommendation. This seems to be a very aggressive disease and timing is everything. Best of luck to you.
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- February 8, 2016 at 4:03 pm
Anonymous, just checking in to see how you are doing. Is vulvar cutaneous melanoma considered to be as aggressive as the mucosal form? My surgeon said it was not, but melanoma specialist also said little is known about vulvovaginal melanoma and there just is not enough solid research to go off of yet. Yours seems to have moved very fast. I am hoping you are having some positive response to the keytruda since you last posted here. I agree stage 3 should not be watch and wait. I don't even think stage 1 or 2 vulvar melanoma should be watch and wait. I was stage 1-2 with regression and specialist recommended frequent scans and checks for local recurrence/lymph nodes the first 2 years, but now we are out almost 3 and going longer between them. It is very frustrating to have a cancer that is rare. Are you being seen by a specialist? This was something that was highly recommended to me many times here on this forum and elsewhere. Anyway, hope you are doing well.
Cheri
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- February 8, 2016 at 4:03 pm
Anonymous, just checking in to see how you are doing. Is vulvar cutaneous melanoma considered to be as aggressive as the mucosal form? My surgeon said it was not, but melanoma specialist also said little is known about vulvovaginal melanoma and there just is not enough solid research to go off of yet. Yours seems to have moved very fast. I am hoping you are having some positive response to the keytruda since you last posted here. I agree stage 3 should not be watch and wait. I don't even think stage 1 or 2 vulvar melanoma should be watch and wait. I was stage 1-2 with regression and specialist recommended frequent scans and checks for local recurrence/lymph nodes the first 2 years, but now we are out almost 3 and going longer between them. It is very frustrating to have a cancer that is rare. Are you being seen by a specialist? This was something that was highly recommended to me many times here on this forum and elsewhere. Anyway, hope you are doing well.
Cheri
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- February 8, 2016 at 4:03 pm
Anonymous, just checking in to see how you are doing. Is vulvar cutaneous melanoma considered to be as aggressive as the mucosal form? My surgeon said it was not, but melanoma specialist also said little is known about vulvovaginal melanoma and there just is not enough solid research to go off of yet. Yours seems to have moved very fast. I am hoping you are having some positive response to the keytruda since you last posted here. I agree stage 3 should not be watch and wait. I don't even think stage 1 or 2 vulvar melanoma should be watch and wait. I was stage 1-2 with regression and specialist recommended frequent scans and checks for local recurrence/lymph nodes the first 2 years, but now we are out almost 3 and going longer between them. It is very frustrating to have a cancer that is rare. Are you being seen by a specialist? This was something that was highly recommended to me many times here on this forum and elsewhere. Anyway, hope you are doing well.
Cheri
-
- November 9, 2015 at 4:06 pm
Thank you for your comment. Initially they mis diagnosed as mucosal. No BRAF mutation unfortunately. The tumor was removed and one lymph node positive, the second negative. The recommendation was to not remove remaining lymph. 3 months later on PET and another lymph node positive so had completelymphadanectomy. 3 months out from that. now have metastatic disease in liver and lungs. When stage 3 I was looking at clinical trials involving keytruda. Now stage 4, it's time for keytruda. I really hope stage 3 is no longer a wait and watch recommendation. This seems to be a very aggressive disease and timing is everything. Best of luck to you.
-
- October 28, 2015 at 7:02 pm
My understanding from my surgeon was that vulvar cutaneous is treated and staged like cutaneous melanoma elsewhere on the body. It therefore has a better prognosis than vulvar mucosal, and the melanoma may have some of the genetic markers found in other cutaneous melanomas that make them receptive to some of the newer drugs (BRAF, etc), which, aside from KIT, mucosal melanoma usually doesn't have.
My own is vulvar, so I can't speak to treatment. You are the first I have met with cutaneous and I would be interested in hearing what your own doctors have told you and recommended too.
Best wishes to you!
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Tagged: cutaneous melanoma, mucosal melanoma
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