› Forums › General Melanoma Community › newly diagnosed with amelanotic melanoma and looking for info
- This topic has 27 replies, 6 voices, and was last updated 12 years, 10 months ago by
Tina D.
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- June 23, 2013 at 4:38 pm
Just this week I was diagnosed with amelanotic melanoma. All I know right now is that my tumor is 1.15 with no clean margins and a level 4. I am expecting to have surgery this week. As I try to wrap my mind around all of this, the information online is overwhelming. I just found this site and already it is helpful. The tumor is on my face near my ear. The plastic surgeon has told me part of my ear will need to be removed. This is so hard. Can anyone help me understand if amelanotic melanoma is more aggressive than other types? Has anyone had surgery on their face?
Just this week I was diagnosed with amelanotic melanoma. All I know right now is that my tumor is 1.15 with no clean margins and a level 4. I am expecting to have surgery this week. As I try to wrap my mind around all of this, the information online is overwhelming. I just found this site and already it is helpful. The tumor is on my face near my ear. The plastic surgeon has told me part of my ear will need to be removed. This is so hard. Can anyone help me understand if amelanotic melanoma is more aggressive than other types? Has anyone had surgery on their face? Of course, I am afraid of how my face will look after surgery but mostly afraid of what the SLB will show. This is the first time I have ever posted on any site and it feel strange.
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- June 23, 2013 at 6:29 pm
Please don't feel strange Linda. From all of us who have been there before we all understand how scary all this can be. We are here for each other no matter what your question is someone on here has probably experienced it and can help you.
From what I understand Amelanotic Melanoma is non pigmented melanoma. Meaning the mole or spot had no color. I assume this was just a biopsy and they are going in for the Wide local Excision and sentinal lymph nodes. You should get a full pathology report. At that time someone should be able to tell you what it all means.
You should ask your doctor/surgeon to test the tumor for the BRAF mutation. If you should need further treatment this information will be extremely helpful. ALWAYS ask for copies of your reports and scans!!! Also depending on your pathology report you will need a melanoma specialist. I only had a regular oncologist and really wish I would have seeked out a specialist long ago.
So sorry you had to come to this sight but I'm glad you did. The people on here have a lot of knowledge to help you.
All my best to you Linda,
Denise
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- June 23, 2013 at 6:29 pm
Please don't feel strange Linda. From all of us who have been there before we all understand how scary all this can be. We are here for each other no matter what your question is someone on here has probably experienced it and can help you.
From what I understand Amelanotic Melanoma is non pigmented melanoma. Meaning the mole or spot had no color. I assume this was just a biopsy and they are going in for the Wide local Excision and sentinal lymph nodes. You should get a full pathology report. At that time someone should be able to tell you what it all means.
You should ask your doctor/surgeon to test the tumor for the BRAF mutation. If you should need further treatment this information will be extremely helpful. ALWAYS ask for copies of your reports and scans!!! Also depending on your pathology report you will need a melanoma specialist. I only had a regular oncologist and really wish I would have seeked out a specialist long ago.
So sorry you had to come to this sight but I'm glad you did. The people on here have a lot of knowledge to help you.
All my best to you Linda,
Denise
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- June 23, 2013 at 6:29 pm
Please don't feel strange Linda. From all of us who have been there before we all understand how scary all this can be. We are here for each other no matter what your question is someone on here has probably experienced it and can help you.
From what I understand Amelanotic Melanoma is non pigmented melanoma. Meaning the mole or spot had no color. I assume this was just a biopsy and they are going in for the Wide local Excision and sentinal lymph nodes. You should get a full pathology report. At that time someone should be able to tell you what it all means.
You should ask your doctor/surgeon to test the tumor for the BRAF mutation. If you should need further treatment this information will be extremely helpful. ALWAYS ask for copies of your reports and scans!!! Also depending on your pathology report you will need a melanoma specialist. I only had a regular oncologist and really wish I would have seeked out a specialist long ago.
So sorry you had to come to this sight but I'm glad you did. The people on here have a lot of knowledge to help you.
All my best to you Linda,
Denise
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- June 23, 2013 at 7:40 pm
I'm very sorry to hear about yoru diagnosis. Denise gave you some good advice.
Not only is the information on line overwhelming, but much of it may be out of date. Until you know where you are at with your melanoma, stay off medical web sites. If you have any questions, come here and ask, don't go searching for anything.
Another piece of advice I'd like to offer is to make sure that your oncologist specializes in melanoma and is not a general oncologist. A melanoma specialist will be more familiar with the capriousness of it as well as be up to speed on all your available treatment options, including clinical trials. The best place to find someone like that is at a melanoma clinic at a major hospital.
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- June 23, 2013 at 7:40 pm
I'm very sorry to hear about yoru diagnosis. Denise gave you some good advice.
Not only is the information on line overwhelming, but much of it may be out of date. Until you know where you are at with your melanoma, stay off medical web sites. If you have any questions, come here and ask, don't go searching for anything.
Another piece of advice I'd like to offer is to make sure that your oncologist specializes in melanoma and is not a general oncologist. A melanoma specialist will be more familiar with the capriousness of it as well as be up to speed on all your available treatment options, including clinical trials. The best place to find someone like that is at a melanoma clinic at a major hospital.
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- June 23, 2013 at 7:40 pm
I'm very sorry to hear about yoru diagnosis. Denise gave you some good advice.
Not only is the information on line overwhelming, but much of it may be out of date. Until you know where you are at with your melanoma, stay off medical web sites. If you have any questions, come here and ask, don't go searching for anything.
Another piece of advice I'd like to offer is to make sure that your oncologist specializes in melanoma and is not a general oncologist. A melanoma specialist will be more familiar with the capriousness of it as well as be up to speed on all your available treatment options, including clinical trials. The best place to find someone like that is at a melanoma clinic at a major hospital.
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- June 27, 2013 at 1:36 pm
I also had an amelanotic melanoma. It was linkish..almost flesh colored, and perfectly round. Looked like a small pencil eraser. It raised up from the skin. Never dreamt it could be something like melanoma! I remember reading shortly after my diagnosis that amelanotic mel is more aggressive, but I wouldnt put my worries into that. Since then, I have had Drs say… well, yours is obviously not the "garden variety melanoma" . Insinuating that it is even less aggressive than typical mel. Truth is…each person is unique. Do not let yourself get scared based on those stats. See a specialist, yes. Be diligent, yes. But try not to put yourself into a box of stats, because every person, every situation, is unique. Mine was alarmingly far along when I had it removed, and here I am 11 years later, thanking God.
Tina
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- June 27, 2013 at 1:36 pm
I also had an amelanotic melanoma. It was linkish..almost flesh colored, and perfectly round. Looked like a small pencil eraser. It raised up from the skin. Never dreamt it could be something like melanoma! I remember reading shortly after my diagnosis that amelanotic mel is more aggressive, but I wouldnt put my worries into that. Since then, I have had Drs say… well, yours is obviously not the "garden variety melanoma" . Insinuating that it is even less aggressive than typical mel. Truth is…each person is unique. Do not let yourself get scared based on those stats. See a specialist, yes. Be diligent, yes. But try not to put yourself into a box of stats, because every person, every situation, is unique. Mine was alarmingly far along when I had it removed, and here I am 11 years later, thanking God.
Tina
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- June 27, 2013 at 1:36 pm
I also had an amelanotic melanoma. It was linkish..almost flesh colored, and perfectly round. Looked like a small pencil eraser. It raised up from the skin. Never dreamt it could be something like melanoma! I remember reading shortly after my diagnosis that amelanotic mel is more aggressive, but I wouldnt put my worries into that. Since then, I have had Drs say… well, yours is obviously not the "garden variety melanoma" . Insinuating that it is even less aggressive than typical mel. Truth is…each person is unique. Do not let yourself get scared based on those stats. See a specialist, yes. Be diligent, yes. But try not to put yourself into a box of stats, because every person, every situation, is unique. Mine was alarmingly far along when I had it removed, and here I am 11 years later, thanking God.
Tina
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- June 23, 2013 at 8:12 pm
Thank you both for your reply. Good advice. I am lucky to have found the melanoma oncologist in my area who is involved in all of the clinical trials available. Feeling like I am in expert hands has helped me so much. Now I just wait until I have more information. You all know how hard that is. I am with a plastic surgeon who also works hand in hand with my oncologist and is very familiar with all this. I will keep you posted. Already I feel like I have conneced with people who get it in a way no one else can.
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- June 23, 2013 at 8:12 pm
Thank you both for your reply. Good advice. I am lucky to have found the melanoma oncologist in my area who is involved in all of the clinical trials available. Feeling like I am in expert hands has helped me so much. Now I just wait until I have more information. You all know how hard that is. I am with a plastic surgeon who also works hand in hand with my oncologist and is very familiar with all this. I will keep you posted. Already I feel like I have conneced with people who get it in a way no one else can.
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- June 23, 2013 at 8:12 pm
Thank you both for your reply. Good advice. I am lucky to have found the melanoma oncologist in my area who is involved in all of the clinical trials available. Feeling like I am in expert hands has helped me so much. Now I just wait until I have more information. You all know how hard that is. I am with a plastic surgeon who also works hand in hand with my oncologist and is very familiar with all this. I will keep you posted. Already I feel like I have conneced with people who get it in a way no one else can.
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- June 24, 2013 at 12:31 am
I had a dark mole taken off in January that came back as benign. Over the next several months a red bump started to grow in the place the mole was removed. In the end it was red, bumpy and ittchy. It looked alot like basil cell and nothing like melanoma.
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- June 24, 2013 at 12:31 am
I had a dark mole taken off in January that came back as benign. Over the next several months a red bump started to grow in the place the mole was removed. In the end it was red, bumpy and ittchy. It looked alot like basil cell and nothing like melanoma.
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- June 24, 2013 at 12:31 am
I had a dark mole taken off in January that came back as benign. Over the next several months a red bump started to grow in the place the mole was removed. In the end it was red, bumpy and ittchy. It looked alot like basil cell and nothing like melanoma.
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