newly diagnosed IIIA … somewhat in shock, but mostly scared and sad

Hi Louise!
I am so sorry to heard about your melanoma story. You have to be strong and positive and think about your children. I know is very hard but you can do it.
My sister was diagnosed last year with melanoma almost like you but she had 0.6mm breslow depth Clark 3 mitosis less than 1. Was not offered to her the SLNB. Since there I am so afraid she recurred I just can not stop thinking about that…I am so afraid she may be on the 3 % too, no one can guarantee you will not be on that 3 % most people says stage 1a is low risk…and that’s right! But even if you are on the 3 % it doesnt mean anything you just have ro be more vigilant and if something happen there are a lot of new treatment and in a few years who know wont be a cure a definitely cure!!! So dont give up!!!!
Huge hugs and kisses!!!
Marc

Hi Louise!
I am so sorry to heard about your melanoma story. You have to be strong and positive and think about your children. I know is very hard but you can do it.
My sister was diagnosed last year with melanoma almost like you but she had 0.6mm breslow depth Clark 3 mitosis less than 1. Was not offered to her the SLNB. Since there I am so afraid she recurred I just can not stop thinking about that…I am so afraid she may be on the 3 % too, no one can guarantee you will not be on that 3 % most people says stage 1a is low risk…and that’s right! But even if you are on the 3 % it doesnt mean anything you just have ro be more vigilant and if something happen there are a lot of new treatment and in a few years who know wont be a cure a definitely cure!!! So dont give up!!!!
Huge hugs and kisses!!!
Marc

Hi Louise!
I am so sorry to heard about your melanoma story. You have to be strong and positive and think about your children. I know is very hard but you can do it.
My sister was diagnosed last year with melanoma almost like you but she had 0.6mm breslow depth Clark 3 mitosis less than 1. Was not offered to her the SLNB. Since there I am so afraid she recurred I just can not stop thinking about that…I am so afraid she may be on the 3 % too, no one can guarantee you will not be on that 3 % most people says stage 1a is low risk…and that’s right! But even if you are on the 3 % it doesnt mean anything you just have ro be more vigilant and if something happen there are a lot of new treatment and in a few years who know wont be a cure a definitely cure!!! So dont give up!!!!
Huge hugs and kisses!!!
Marc

Hi! I just wanted to send you some well wishes your way. I don't really have any good answers to your questions but I am a stage 3a with my primary on my right foot. I did do the CLND about a month ago. I was hesitant at first but after doing my own research I just didn't feel like there was enough evidence to make me risk not doing it. I am 32 and in pretty good shape but I can say that I do have some slight lymphedema already in my ankle and calf muscle. Not horrible but it's there. The CLND was pretty rough the first few days and then I did get an infection about 10 days in that put me in the hospital for 8 days!! if u so decide to go ahead with the CLND – be sure to elevate and gets lots of fluids & rest. Best of luck to you!!! 

Hi! I just wanted to send you some well wishes your way. I don't really have any good answers to your questions but I am a stage 3a with my primary on my right foot. I did do the CLND about a month ago. I was hesitant at first but after doing my own research I just didn't feel like there was enough evidence to make me risk not doing it. I am 32 and in pretty good shape but I can say that I do have some slight lymphedema already in my ankle and calf muscle. Not horrible but it's there. The CLND was pretty rough the first few days and then I did get an infection about 10 days in that put me in the hospital for 8 days!! if u so decide to go ahead with the CLND – be sure to elevate and gets lots of fluids & rest. Best of luck to you!!! 

Hi! I just wanted to send you some well wishes your way. I don't really have any good answers to your questions but I am a stage 3a with my primary on my right foot. I did do the CLND about a month ago. I was hesitant at first but after doing my own research I just didn't feel like there was enough evidence to make me risk not doing it. I am 32 and in pretty good shape but I can say that I do have some slight lymphedema already in my ankle and calf muscle. Not horrible but it's there. The CLND was pretty rough the first few days and then I did get an infection about 10 days in that put me in the hospital for 8 days!! if u so decide to go ahead with the CLND – be sure to elevate and gets lots of fluids & rest. Best of luck to you!!! 

Hi  Louise,

I believe Melan-a is an antigen that helps identify the presence of melanoma.  I'm sorry you received the news no e of us wanted to hear.  However, in terms of survivability, 3A is statistically more favorable than some lower staged melanomas.

Im also 3A and had two positive nodes when I had my SLNB in 2011.  I wrestled with the decision on whether to have the CLND.  I ultimately decided that I would be as aggressive as possible and had the nodes in my left groin removed.  Not terrible with minimal side effects.  This was preceded by full body CAT And PET scans to make sure there was no further spread of the disease.  After surgery I entered a clinical trial and also,had scans every 3 months for a 1.5 years, every 6 months for 2 years and now yearly.  I went through the same concerns and for me, after I realized this would be a long term situation I settled into a good degree of normalcy, followed by "scanziety" just before each CAT.

 

Prognostically, a 3A melanoma is actually statistically than some lower staged melanomas.  It's all a bit of a shock at first, but the weapons the medical community has to throw at this disease are vastly improved.  

Ask your oncologist about the pros and cons and also inquire about any stage 3 trials that may be available (look carefully at the pros and cons).

 

i think Huntsman is supposed to be a first class facility, so I think you can feel comfortable that you're getting high quality care.

Hang in there Louise. You are lucky to have taken the precaution and caught the melanoma as early as you did (considering the initial diagnosis).  You have a community of terrifically helpful kindred souls here too!

 

Stan

Hi  Louise,

I believe Melan-a is an antigen that helps identify the presence of melanoma.  I'm sorry you received the news no e of us wanted to hear.  However, in terms of survivability, 3A is statistically more favorable than some lower staged melanomas.

Im also 3A and had two positive nodes when I had my SLNB in 2011.  I wrestled with the decision on whether to have the CLND.  I ultimately decided that I would be as aggressive as possible and had the nodes in my left groin removed.  Not terrible with minimal side effects.  This was preceded by full body CAT And PET scans to make sure there was no further spread of the disease.  After surgery I entered a clinical trial and also,had scans every 3 months for a 1.5 years, every 6 months for 2 years and now yearly.  I went through the same concerns and for me, after I realized this would be a long term situation I settled into a good degree of normalcy, followed by "scanziety" just before each CAT.

 

Prognostically, a 3A melanoma is actually statistically than some lower staged melanomas.  It's all a bit of a shock at first, but the weapons the medical community has to throw at this disease are vastly improved.  

Ask your oncologist about the pros and cons and also inquire about any stage 3 trials that may be available (look carefully at the pros and cons).

 

i think Huntsman is supposed to be a first class facility, so I think you can feel comfortable that you're getting high quality care.

Hang in there Louise. You are lucky to have taken the precaution and caught the melanoma as early as you did (considering the initial diagnosis).  You have a community of terrifically helpful kindred souls here too!

 

Stan

Hi  Louise,

I believe Melan-a is an antigen that helps identify the presence of melanoma.  I'm sorry you received the news no e of us wanted to hear.  However, in terms of survivability, 3A is statistically more favorable than some lower staged melanomas.

Im also 3A and had two positive nodes when I had my SLNB in 2011.  I wrestled with the decision on whether to have the CLND.  I ultimately decided that I would be as aggressive as possible and had the nodes in my left groin removed.  Not terrible with minimal side effects.  This was preceded by full body CAT And PET scans to make sure there was no further spread of the disease.  After surgery I entered a clinical trial and also,had scans every 3 months for a 1.5 years, every 6 months for 2 years and now yearly.  I went through the same concerns and for me, after I realized this would be a long term situation I settled into a good degree of normalcy, followed by "scanziety" just before each CAT.

 

Prognostically, a 3A melanoma is actually statistically than some lower staged melanomas.  It's all a bit of a shock at first, but the weapons the medical community has to throw at this disease are vastly improved.  

Ask your oncologist about the pros and cons and also inquire about any stage 3 trials that may be available (look carefully at the pros and cons).

 

i think Huntsman is supposed to be a first class facility, so I think you can feel comfortable that you're getting high quality care.

Hang in there Louise. You are lucky to have taken the precaution and caught the melanoma as early as you did (considering the initial diagnosis).  You have a community of terrifically helpful kindred souls here too!

 

Stan

http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0549203

hi again Louise.

Looks like your surgical oncologist is very highly rated, according g to the link above!  In my case I have a great surgical oncologist and a clinical oncologist.  If you do t know who your oncologist will be, ask about that too.

youre in great hands as it seems.  

Best wishes!

http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0549203

hi again Louise.

Looks like your surgical oncologist is very highly rated, according g to the link above!  In my case I have a great surgical oncologist and a clinical oncologist.  If you do t know who your oncologist will be, ask about that too.

youre in great hands as it seems.  

Best wishes!

http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0549203

hi again Louise.

Looks like your surgical oncologist is very highly rated, according g to the link above!  In my case I have a great surgical oncologist and a clinical oncologist.  If you do t know who your oncologist will be, ask about that too.

youre in great hands as it seems.  

Best wishes!

This is a scary time! I understand the change in perspective of low risk… Mine had an 18% chance of being in the node… And was.  I also have a 20 month old daughter.  She was actually 6 weeks old when this whole journey began. So with all of that- breath! Please make sure you are seeing a melanoma specialist that you are comfortable with.  To give you hope- I'm at 1 1/2 years out (so not real far- but a good start) and have not had any other symptoms.  I did get the clnd just because I am naturally a worrier and it has helped with my peace of mind! Don't be afraid of your emotions and trust your family and close friends! 

This is a scary time! I understand the change in perspective of low risk… Mine had an 18% chance of being in the node… And was.  I also have a 20 month old daughter.  She was actually 6 weeks old when this whole journey began. So with all of that- breath! Please make sure you are seeing a melanoma specialist that you are comfortable with.  To give you hope- I'm at 1 1/2 years out (so not real far- but a good start) and have not had any other symptoms.  I did get the clnd just because I am naturally a worrier and it has helped with my peace of mind! Don't be afraid of your emotions and trust your family and close friends! 

This is a scary time! I understand the change in perspective of low risk… Mine had an 18% chance of being in the node… And was.  I also have a 20 month old daughter.  She was actually 6 weeks old when this whole journey began. So with all of that- breath! Please make sure you are seeing a melanoma specialist that you are comfortable with.  To give you hope- I'm at 1 1/2 years out (so not real far- but a good start) and have not had any other symptoms.  I did get the clnd just because I am naturally a worrier and it has helped with my peace of mind! Don't be afraid of your emotions and trust your family and close friends! 

Hi Louise,

Sorry that you have made it to this board but it is a great support network.  My quick story started 5 years ago, I had a 1.5mm met removed from my center chest, went to stage IIIa like you are now when it was found micro under left arm. I opted to have the CLND since it was recommended, 42 nodes removed, the drain was terrible to say the least.  I was scanned for 2 years, and all was clear. This July I had a cough, my dermatologist sent me for a chest Xray, found a spot on my chest and now I have Stage4 in lungs/abdomen/neck and liver at least. Started treatment in late Aug, still doing great. I also have a 4 year old boy, so i understand the potential of not seeing him grow up. Melanoma is very sneaky, and with you at stage IIIa there are some options to treatment that were not available 5 years ago.  It is not a death sentence anymore.  The CLND is up to you and your doctors, make sure you are being seen by a melanoma specialist, that is key.  Try to enjoy each day, and know that there are support groups to help.  There is also a good one on Facebook that I am on more than this board.  Best of luck. Dave

Hi Louise,

Sorry that you have made it to this board but it is a great support network.  My quick story started 5 years ago, I had a 1.5mm met removed from my center chest, went to stage IIIa like you are now when it was found micro under left arm. I opted to have the CLND since it was recommended, 42 nodes removed, the drain was terrible to say the least.  I was scanned for 2 years, and all was clear. This July I had a cough, my dermatologist sent me for a chest Xray, found a spot on my chest and now I have Stage4 in lungs/abdomen/neck and liver at least. Started treatment in late Aug, still doing great. I also have a 4 year old boy, so i understand the potential of not seeing him grow up. Melanoma is very sneaky, and with you at stage IIIa there are some options to treatment that were not available 5 years ago.  It is not a death sentence anymore.  The CLND is up to you and your doctors, make sure you are being seen by a melanoma specialist, that is key.  Try to enjoy each day, and know that there are support groups to help.  There is also a good one on Facebook that I am on more than this board.  Best of luck. Dave

Hi Louise,

Sorry that you have made it to this board but it is a great support network.  My quick story started 5 years ago, I had a 1.5mm met removed from my center chest, went to stage IIIa like you are now when it was found micro under left arm. I opted to have the CLND since it was recommended, 42 nodes removed, the drain was terrible to say the least.  I was scanned for 2 years, and all was clear. This July I had a cough, my dermatologist sent me for a chest Xray, found a spot on my chest and now I have Stage4 in lungs/abdomen/neck and liver at least. Started treatment in late Aug, still doing great. I also have a 4 year old boy, so i understand the potential of not seeing him grow up. Melanoma is very sneaky, and with you at stage IIIa there are some options to treatment that were not available 5 years ago.  It is not a death sentence anymore.  The CLND is up to you and your doctors, make sure you are being seen by a melanoma specialist, that is key.  Try to enjoy each day, and know that there are support groups to help.  There is also a good one on Facebook that I am on more than this board.  Best of luck. Dave

I am surprised that at .58 you had a spread to the lymph nodes but boy did you dodge a bullet by getting a SNLB done, most insurances won't pay for that when the melanoma is that thin. 

To answer some of your questions:

1.  Melan-A is simply a set of protiens used to identify Menanoma.

2.  Are you going to be alive in 10 years?  Which one of of knows.  Is Melnoma going to kill you?  I'd bet against it.  I'm stage 3a and I am now 6 years NED, after doing a CLND and then Wait and Watch.

3.  You need to learn to trust in somethig to stop worring about this.  Yourself, the doctors, God, whatever. 

4.  However,  the 20% chance of lymphadema…if they are speaking about after a CLND, I am not buying that one!  You can control lymphadema though.  Compression garments, massage,etc.  Just don't wait to attack it!

Good Luck!

Mary

I am surprised that at .58 you had a spread to the lymph nodes but boy did you dodge a bullet by getting a SNLB done, most insurances won't pay for that when the melanoma is that thin. 

To answer some of your questions:

1.  Melan-A is simply a set of protiens used to identify Menanoma.

2.  Are you going to be alive in 10 years?  Which one of of knows.  Is Melnoma going to kill you?  I'd bet against it.  I'm stage 3a and I am now 6 years NED, after doing a CLND and then Wait and Watch.

3.  You need to learn to trust in somethig to stop worring about this.  Yourself, the doctors, God, whatever. 

4.  However,  the 20% chance of lymphadema…if they are speaking about after a CLND, I am not buying that one!  You can control lymphadema though.  Compression garments, massage,etc.  Just don't wait to attack it!

Good Luck!

Mary

I am surprised that at .58 you had a spread to the lymph nodes but boy did you dodge a bullet by getting a SNLB done, most insurances won't pay for that when the melanoma is that thin. 

To answer some of your questions:

1.  Melan-A is simply a set of protiens used to identify Menanoma.

2.  Are you going to be alive in 10 years?  Which one of of knows.  Is Melnoma going to kill you?  I'd bet against it.  I'm stage 3a and I am now 6 years NED, after doing a CLND and then Wait and Watch.

3.  You need to learn to trust in somethig to stop worring about this.  Yourself, the doctors, God, whatever. 

4.  However,  the 20% chance of lymphadema…if they are speaking about after a CLND, I am not buying that one!  You can control lymphadema though.  Compression garments, massage,etc.  Just don't wait to attack it!

Good Luck!

Mary

Louise,

So sorry you are here. 

I've started this reply about 3 times but can't seem to find the right words.  I've been exactly where you are and I know it's not easy.

The CLND is tough.  I had one but my situation was a little different.  I had a known tumor in my left armpit so even though the CLND was kind of a no brainer I still hated the idea.  If I was in your shoes I'm not sure what I would do.  I'd probably be leaining like you are because I just couldn't stand the idea if I didn't make it that I hadn't done everything I could have.

The CLND was a little tough but the discomfort is only temporay.  I've had very little if any lymphadema.  I've never needed to use a compression sleeve but if you do have a problem I think they will take care of most issues.

Try to stay as positive as you can.  I know that's not easy but just try to remember that the odds are still much more in your favor that you won't have any more issues in the future and if you do there are fantastic options available now that were not available even just a few years ago.  If you are a "googler" and have been looking at the survival statistics just keep in mind those statistics are for the last 5 years.  It's a whole different game with these new drugs.

Brian

 

Louise,

So sorry you are here. 

I've started this reply about 3 times but can't seem to find the right words.  I've been exactly where you are and I know it's not easy.

The CLND is tough.  I had one but my situation was a little different.  I had a known tumor in my left armpit so even though the CLND was kind of a no brainer I still hated the idea.  If I was in your shoes I'm not sure what I would do.  I'd probably be leaining like you are because I just couldn't stand the idea if I didn't make it that I hadn't done everything I could have.

The CLND was a little tough but the discomfort is only temporay.  I've had very little if any lymphadema.  I've never needed to use a compression sleeve but if you do have a problem I think they will take care of most issues.

Try to stay as positive as you can.  I know that's not easy but just try to remember that the odds are still much more in your favor that you won't have any more issues in the future and if you do there are fantastic options available now that were not available even just a few years ago.  If you are a "googler" and have been looking at the survival statistics just keep in mind those statistics are for the last 5 years.  It's a whole different game with these new drugs.

Brian

 

Louise,

So sorry you are here. 

I've started this reply about 3 times but can't seem to find the right words.  I've been exactly where you are and I know it's not easy.

The CLND is tough.  I had one but my situation was a little different.  I had a known tumor in my left armpit so even though the CLND was kind of a no brainer I still hated the idea.  If I was in your shoes I'm not sure what I would do.  I'd probably be leaining like you are because I just couldn't stand the idea if I didn't make it that I hadn't done everything I could have.

The CLND was a little tough but the discomfort is only temporay.  I've had very little if any lymphadema.  I've never needed to use a compression sleeve but if you do have a problem I think they will take care of most issues.

Try to stay as positive as you can.  I know that's not easy but just try to remember that the odds are still much more in your favor that you won't have any more issues in the future and if you do there are fantastic options available now that were not available even just a few years ago.  If you are a "googler" and have been looking at the survival statistics just keep in mind those statistics are for the last 5 years.  It's a whole different game with these new drugs.

Brian

 

Louise,

Hi, sorry you are here and sorry it appears I have taken so long to answer.  This is actually my second answer, my frist somehow went off to never, never land…….  I'll try to answer most of your questions best as I can anyway.

1.  I would suspect it is very good that there are only three cells but wat you want to look for in the pathology report is if it was Micro or Macro.   Micro (tiny) is good.

2.  Melna A is a marker – a group of protiens I believe they use to diagnose Melanoma.

3.  Are you going to be alive in 10 years?  Beats the heck out of me.  We all die sometime.  Is melanoma going to kill you?  I'd bet that it wouldn't.  I'm stage 3a, I have been NED for over 6 years now.  Had a CLND and then wait and watch.

4..How do you fall asleep at night.  You have to believ in something…yourself, your doctors, God, something!

5. Lyphadema.  Not sure whether you are refering to CLND or SLNB.  But if it's a CLND than I sure don't believe that the risk is so low!  However, Lymphadema is manageable.  get fitted for a compression garment immediately, as soon as there is any sign of swelling to to ma massage therapist that specializes in lyphadema. 

 

Truthfully, the CLND is probably just for your pice of mind if you just had micro matisis, but as they commercial says…..that's priceless.

Good Luck,

Mary

 

Louise,

Hi, sorry you are here and sorry it appears I have taken so long to answer.  This is actually my second answer, my frist somehow went off to never, never land…….  I'll try to answer most of your questions best as I can anyway.

1.  I would suspect it is very good that there are only three cells but wat you want to look for in the pathology report is if it was Micro or Macro.   Micro (tiny) is good.

2.  Melna A is a marker – a group of protiens I believe they use to diagnose Melanoma.

3.  Are you going to be alive in 10 years?  Beats the heck out of me.  We all die sometime.  Is melanoma going to kill you?  I'd bet that it wouldn't.  I'm stage 3a, I have been NED for over 6 years now.  Had a CLND and then wait and watch.

4..How do you fall asleep at night.  You have to believ in something…yourself, your doctors, God, something!

5. Lyphadema.  Not sure whether you are refering to CLND or SLNB.  But if it's a CLND than I sure don't believe that the risk is so low!  However, Lymphadema is manageable.  get fitted for a compression garment immediately, as soon as there is any sign of swelling to to ma massage therapist that specializes in lyphadema. 

 

Truthfully, the CLND is probably just for your pice of mind if you just had micro matisis, but as they commercial says…..that's priceless.

Good Luck,

Mary

 

Louise,

Hi, sorry you are here and sorry it appears I have taken so long to answer.  This is actually my second answer, my frist somehow went off to never, never land…….  I'll try to answer most of your questions best as I can anyway.

1.  I would suspect it is very good that there are only three cells but wat you want to look for in the pathology report is if it was Micro or Macro.   Micro (tiny) is good.

2.  Melna A is a marker – a group of protiens I believe they use to diagnose Melanoma.

3.  Are you going to be alive in 10 years?  Beats the heck out of me.  We all die sometime.  Is melanoma going to kill you?  I'd bet that it wouldn't.  I'm stage 3a, I have been NED for over 6 years now.  Had a CLND and then wait and watch.

4..How do you fall asleep at night.  You have to believ in something…yourself, your doctors, God, something!

5. Lyphadema.  Not sure whether you are refering to CLND or SLNB.  But if it's a CLND than I sure don't believe that the risk is so low!  However, Lymphadema is manageable.  get fitted for a compression garment immediately, as soon as there is any sign of swelling to to ma massage therapist that specializes in lyphadema. 

 

Truthfully, the CLND is probably just for your pice of mind if you just had micro matisis, but as they commercial says…..that's priceless.

Good Luck,

Mary