› Forums › General Melanoma Community › After my Stage IV diagnosis, brother diagnosed as Stage I
- This topic has 12 replies, 3 voices, and was last updated 10 years, 7 months ago by
AshleyS.
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- July 11, 2015 at 9:54 pm
Hey guys. Bad news for my family today. My brother (maternal half-brother, 14 years my senior) found out he has Stage IA melanoma, upper left shoulder, Breslow = .6. He's having a SLNB next week. I told him to ask for a PET as well. Any other tips for him, especially because of my history?
Thanks,
Ashley
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- July 11, 2015 at 10:26 pm
It is unlikely that they will do a PET for a stage 1a lesion tregardless of family history. Insurance wouldn't approve it. And truthfully, the likelihood that a stage 1a lesion has spread is very low. Truthfully, many won't even do the SLNB for stage 1a or lesions under 1mm unless there are other higher risk factories. PET scans don't pick up microscopic cells so the SLNB would be much more telling than the PET scan would. It's a low risk lesion, just surgery then regular follow ups. No other treatment is appropriate.
Best wishes!
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- July 11, 2015 at 10:26 pm
It is unlikely that they will do a PET for a stage 1a lesion tregardless of family history. Insurance wouldn't approve it. And truthfully, the likelihood that a stage 1a lesion has spread is very low. Truthfully, many won't even do the SLNB for stage 1a or lesions under 1mm unless there are other higher risk factories. PET scans don't pick up microscopic cells so the SLNB would be much more telling than the PET scan would. It's a low risk lesion, just surgery then regular follow ups. No other treatment is appropriate.
Best wishes!
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- July 11, 2015 at 10:26 pm
It is unlikely that they will do a PET for a stage 1a lesion tregardless of family history. Insurance wouldn't approve it. And truthfully, the likelihood that a stage 1a lesion has spread is very low. Truthfully, many won't even do the SLNB for stage 1a or lesions under 1mm unless there are other higher risk factories. PET scans don't pick up microscopic cells so the SLNB would be much more telling than the PET scan would. It's a low risk lesion, just surgery then regular follow ups. No other treatment is appropriate.
Best wishes!
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- July 12, 2015 at 1:30 am
Ashley,
Were you tested to see if you were BRAF positive? If you were, it is likely that others in your family may be BRAF positive.
Both my sister and I had melanoma a few years before my Mom was diagnosed. I wished I'd know then that if there are 2 people in your immediate family who have it, then it is likely that you may have the gene. About 1 1/2 years after I had the melanoma removed my Mom was diagnosed at Stage IV. One month later my Aunt (her sister) was also diagnosed with Melanoma. My Mom was the only one who had genetic testing and she ended up being BRAF positive.
With that said, it would be good to let your family know if you are BRAF positive, or not. If you are, they may want to be a bit more vigilant about checking for any moles and seeing the dermatologist more often – And be sure the dermatologist checks their scalp.
Best,
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- July 12, 2015 at 2:20 am
I think you have your genetic testing mixed up. BRAF is an expression on a melanoma tumor but it is NOT a genetic predisposition to melanoma. I have a genetic defect for familial melanoma and it is CdKN2A. About 4% of the melanoma population have this defect. It is found in the blood chemistry. BRAF comes from testing an actual melanoma tumor and about 50% are BRAF positive. Anyone with the cdkn2a (p16) gene Is at a very high lifetime risk (I was given 76% but that was over ten years ago and there has been more research since). BRAF is used for treatment options – testing an actual tumor, CDKN2A is a genetic familial risk – 2 different things.
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- July 12, 2015 at 2:20 am
I think you have your genetic testing mixed up. BRAF is an expression on a melanoma tumor but it is NOT a genetic predisposition to melanoma. I have a genetic defect for familial melanoma and it is CdKN2A. About 4% of the melanoma population have this defect. It is found in the blood chemistry. BRAF comes from testing an actual melanoma tumor and about 50% are BRAF positive. Anyone with the cdkn2a (p16) gene Is at a very high lifetime risk (I was given 76% but that was over ten years ago and there has been more research since). BRAF is used for treatment options – testing an actual tumor, CDKN2A is a genetic familial risk – 2 different things.
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- July 12, 2015 at 2:20 am
I think you have your genetic testing mixed up. BRAF is an expression on a melanoma tumor but it is NOT a genetic predisposition to melanoma. I have a genetic defect for familial melanoma and it is CdKN2A. About 4% of the melanoma population have this defect. It is found in the blood chemistry. BRAF comes from testing an actual melanoma tumor and about 50% are BRAF positive. Anyone with the cdkn2a (p16) gene Is at a very high lifetime risk (I was given 76% but that was over ten years ago and there has been more research since). BRAF is used for treatment options – testing an actual tumor, CDKN2A is a genetic familial risk – 2 different things.
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- July 12, 2015 at 1:30 am
Ashley,
Were you tested to see if you were BRAF positive? If you were, it is likely that others in your family may be BRAF positive.
Both my sister and I had melanoma a few years before my Mom was diagnosed. I wished I'd know then that if there are 2 people in your immediate family who have it, then it is likely that you may have the gene. About 1 1/2 years after I had the melanoma removed my Mom was diagnosed at Stage IV. One month later my Aunt (her sister) was also diagnosed with Melanoma. My Mom was the only one who had genetic testing and she ended up being BRAF positive.
With that said, it would be good to let your family know if you are BRAF positive, or not. If you are, they may want to be a bit more vigilant about checking for any moles and seeing the dermatologist more often – And be sure the dermatologist checks their scalp.
Best,
-
- July 12, 2015 at 1:30 am
Ashley,
Were you tested to see if you were BRAF positive? If you were, it is likely that others in your family may be BRAF positive.
Both my sister and I had melanoma a few years before my Mom was diagnosed. I wished I'd know then that if there are 2 people in your immediate family who have it, then it is likely that you may have the gene. About 1 1/2 years after I had the melanoma removed my Mom was diagnosed at Stage IV. One month later my Aunt (her sister) was also diagnosed with Melanoma. My Mom was the only one who had genetic testing and she ended up being BRAF positive.
With that said, it would be good to let your family know if you are BRAF positive, or not. If you are, they may want to be a bit more vigilant about checking for any moles and seeing the dermatologist more often – And be sure the dermatologist checks their scalp.
Best,
-
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