First Steps

Hello Christian,

Although I wish no one ever had to find this forum I am glad you did. I am fairly new to melanoma (about 5 months) and have found this board very helpful. I would first find out if them can still do a sentinal node byopsy. This will help them tell if it has made it to your lymph nodes. From there they will know a lot more. I would say the most important thing is to ask any and all questions you can think of. If you don't understand there explination ask them to explain it again. Not a lot of doctors are well versed in Melanoma so it is important to get to a melanoma specialist as soon as you can to make sure you know all your options.

I hope you are one of the lucky ones who caught it early and it was just the mole and has not spread. If not you will find tons of support and information here.

Best of luck!

Hello Christian,

Although I wish no one ever had to find this forum I am glad you did. I am fairly new to melanoma (about 5 months) and have found this board very helpful. I would first find out if them can still do a sentinal node byopsy. This will help them tell if it has made it to your lymph nodes. From there they will know a lot more. I would say the most important thing is to ask any and all questions you can think of. If you don't understand there explination ask them to explain it again. Not a lot of doctors are well versed in Melanoma so it is important to get to a melanoma specialist as soon as you can to make sure you know all your options.

I hope you are one of the lucky ones who caught it early and it was just the mole and has not spread. If not you will find tons of support and information here.

Best of luck!

Hello Christian,

Although I wish no one ever had to find this forum I am glad you did. I am fairly new to melanoma (about 5 months) and have found this board very helpful. I would first find out if them can still do a sentinal node byopsy. This will help them tell if it has made it to your lymph nodes. From there they will know a lot more. I would say the most important thing is to ask any and all questions you can think of. If you don't understand there explination ask them to explain it again. Not a lot of doctors are well versed in Melanoma so it is important to get to a melanoma specialist as soon as you can to make sure you know all your options.

I hope you are one of the lucky ones who caught it early and it was just the mole and has not spread. If not you will find tons of support and information here.

Best of luck!

The next step would be a WLE (Wide Local Excision – cutting the skin around the site out to make sure they get it all from the initial site) and a SNB (Sentinel Node Biopsy – checking the nearest lymph nodes to see if it's spread there). The WLE is usually done by a surgeon; mine was done at the same time as the SNB. My dermatologist (who removed the mole that turned out to be melanoma) deliberately didn't take as much of it as he could have because he could tell just by looking at it that it was going to be bad, and he didn't want to delay the WLE/SNB while my biopsy site healed up. However, my melanoma was nodular and much bigger by the time it was found than yours was, so that might have influenced his decision to let the surgeon deal with it instead of doing it himself.

They can't stage it until they do the SNB, at the least. My diagnosis of melanoma was Jan 15th this year but I didn't get a staging until late February, after two surgeries (the WLE/SNB, and then a neck dissection to pull out more lymph nodes because those came back cancerous). So it'll be a bit until you know a stage, probably; that's normal. I would try to find a good otolaryngology (head and neck) surgeon; the better they are, the less problem you'll have recovering afterwards. Head melanomas generally drain to the lymph nodes in the neck, and that's not an area you want an amateur poking around in.

I'm not sure about questions; at that stage, I was pretty much just clarifying what I was told ("So when you say ____, you mean that _______ is going to happen, yes?"). You might ask about getting the tumor tested for various genetic mutations (especially BRAF), as some of these mutations can get you into certain clinical trials, depending on your stage/situation. Try to bring someone you trust with you to all your appointments; it's good to have a second pair of ears, as well as someone else who can ask questions that maybe you didn't think of. Good luck!

The next step would be a WLE (Wide Local Excision – cutting the skin around the site out to make sure they get it all from the initial site) and a SNB (Sentinel Node Biopsy – checking the nearest lymph nodes to see if it's spread there). The WLE is usually done by a surgeon; mine was done at the same time as the SNB. My dermatologist (who removed the mole that turned out to be melanoma) deliberately didn't take as much of it as he could have because he could tell just by looking at it that it was going to be bad, and he didn't want to delay the WLE/SNB while my biopsy site healed up. However, my melanoma was nodular and much bigger by the time it was found than yours was, so that might have influenced his decision to let the surgeon deal with it instead of doing it himself.

They can't stage it until they do the SNB, at the least. My diagnosis of melanoma was Jan 15th this year but I didn't get a staging until late February, after two surgeries (the WLE/SNB, and then a neck dissection to pull out more lymph nodes because those came back cancerous). So it'll be a bit until you know a stage, probably; that's normal. I would try to find a good otolaryngology (head and neck) surgeon; the better they are, the less problem you'll have recovering afterwards. Head melanomas generally drain to the lymph nodes in the neck, and that's not an area you want an amateur poking around in.

I'm not sure about questions; at that stage, I was pretty much just clarifying what I was told ("So when you say ____, you mean that _______ is going to happen, yes?"). You might ask about getting the tumor tested for various genetic mutations (especially BRAF), as some of these mutations can get you into certain clinical trials, depending on your stage/situation. Try to bring someone you trust with you to all your appointments; it's good to have a second pair of ears, as well as someone else who can ask questions that maybe you didn't think of. Good luck!

The next step would be a WLE (Wide Local Excision – cutting the skin around the site out to make sure they get it all from the initial site) and a SNB (Sentinel Node Biopsy – checking the nearest lymph nodes to see if it's spread there). The WLE is usually done by a surgeon; mine was done at the same time as the SNB. My dermatologist (who removed the mole that turned out to be melanoma) deliberately didn't take as much of it as he could have because he could tell just by looking at it that it was going to be bad, and he didn't want to delay the WLE/SNB while my biopsy site healed up. However, my melanoma was nodular and much bigger by the time it was found than yours was, so that might have influenced his decision to let the surgeon deal with it instead of doing it himself.

They can't stage it until they do the SNB, at the least. My diagnosis of melanoma was Jan 15th this year but I didn't get a staging until late February, after two surgeries (the WLE/SNB, and then a neck dissection to pull out more lymph nodes because those came back cancerous). So it'll be a bit until you know a stage, probably; that's normal. I would try to find a good otolaryngology (head and neck) surgeon; the better they are, the less problem you'll have recovering afterwards. Head melanomas generally drain to the lymph nodes in the neck, and that's not an area you want an amateur poking around in.

I'm not sure about questions; at that stage, I was pretty much just clarifying what I was told ("So when you say ____, you mean that _______ is going to happen, yes?"). You might ask about getting the tumor tested for various genetic mutations (especially BRAF), as some of these mutations can get you into certain clinical trials, depending on your stage/situation. Try to bring someone you trust with you to all your appointments; it's good to have a second pair of ears, as well as someone else who can ask questions that maybe you didn't think of. Good luck!

Hi,

Sorry you have to join us but this is a good place for information.

First I would find a melanoma specialist that is a good head and neck surgeon as they will be able to do the most for you.  

My husbands was 10.5 mm when first diagnosed and his SNB came out negative when they did the WLE and it has never been in his lymph system as it traveled through his blood and almost 3 years later it had showed as a unresectable on the C1-C2 cervical spine and also in his liver and lungs.  So not all melanoma travels through the lymph system but his was ulcerated when first found.  And yes as a man he kept putting off going figuring it would go away which it didn't.

I agree take someone with you to the appointment as extra ears can hear what a patient misses.  We also took a tape recorder with us to all appointments and asked the doctor if it would be okay to tape the meeting in case we missed anything.  He was fine with that.

I wish you luck and hope you don't have a reoccurence.  After you find out your results check back with the board with any more questions you may have.

Judy (loving wife of Gene Stage IV and now NED)

Hi,

Sorry you have to join us but this is a good place for information.

First I would find a melanoma specialist that is a good head and neck surgeon as they will be able to do the most for you.  

My husbands was 10.5 mm when first diagnosed and his SNB came out negative when they did the WLE and it has never been in his lymph system as it traveled through his blood and almost 3 years later it had showed as a unresectable on the C1-C2 cervical spine and also in his liver and lungs.  So not all melanoma travels through the lymph system but his was ulcerated when first found.  And yes as a man he kept putting off going figuring it would go away which it didn't.

I agree take someone with you to the appointment as extra ears can hear what a patient misses.  We also took a tape recorder with us to all appointments and asked the doctor if it would be okay to tape the meeting in case we missed anything.  He was fine with that.

I wish you luck and hope you don't have a reoccurence.  After you find out your results check back with the board with any more questions you may have.

Judy (loving wife of Gene Stage IV and now NED)

Hi,

Sorry you have to join us but this is a good place for information.

First I would find a melanoma specialist that is a good head and neck surgeon as they will be able to do the most for you.  

My husbands was 10.5 mm when first diagnosed and his SNB came out negative when they did the WLE and it has never been in his lymph system as it traveled through his blood and almost 3 years later it had showed as a unresectable on the C1-C2 cervical spine and also in his liver and lungs.  So not all melanoma travels through the lymph system but his was ulcerated when first found.  And yes as a man he kept putting off going figuring it would go away which it didn't.

I agree take someone with you to the appointment as extra ears can hear what a patient misses.  We also took a tape recorder with us to all appointments and asked the doctor if it would be okay to tape the meeting in case we missed anything.  He was fine with that.

I wish you luck and hope you don't have a reoccurence.  After you find out your results check back with the board with any more questions you may have.

Judy (loving wife of Gene Stage IV and now NED)