› Forums › General Melanoma Community › CALND decision: discussed with surgeon, slightly confused now
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washoegal.
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- March 6, 2013 at 2:02 am
I met with the surgeon today. (WLE = clean, SLN = 0.1mm micromets, Stage 3a). Two oncologists recommend CALND.
I met with the surgeon today. (WLE = clean, SLN = 0.1mm micromets, Stage 3a). Two oncologists recommend CALND.
Surgeon says CALND is NOT "curative", but rather a tool for staging purposes. He said the ONLY reason for this surgery is to determine if my other nodes have mets. If not, it means little because the melanoma could have slipped through the lymph and is waiting to colonize somewhere in my body. If I do have more affected lymph nodes, it would increase my stage and I could consider a clinical trial–and I'd probably have metastatic disease waiting to happen.
He told me that either way (surgery or no), my chances of survival are exactly the same. I'm not sure how this could be. While the treatments for melanoma aren't many, we do have SOME weapons in the arsenal.
I feel really down at this news and am unsure how to proceed.
Any advice or insight is greatly appreciated.
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- March 6, 2013 at 2:08 am
What does CALND mean? -
- March 6, 2013 at 2:08 am
What does CALND mean? -
- March 6, 2013 at 2:08 am
What does CALND mean? -
- March 6, 2013 at 2:42 am
He told me that either way (surgery or no), my chances of survival are exactly the same. I'm not sure how this could be. While the treatments for melanoma aren't many, we do have SOME weapons in the arsenal.
This statement goes hand in hand with with your first line – the LND is not curative but only used for staging. I'm not sure why you are questioning your chances of survival with/without surgery. The point is that yes, there are treatments, but the treatments exist regardless of whether you have the LND or not. The standard of care is the LND, but there are certainly reasons enough to consider not doing it especially when your sentinel node showed such little disease. The only other thing that comes to mind for me is that some clinical trials do require you to have had the LND. If you were going to look at clinical trials now, then you might double check because the LND may be a requirement. If you are just planning on doing no adjuvant therapy or doing Interferon (the only approved adjuvant therapy for stage III) – then you can consider both options.
Best wishes,
Janner
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- March 6, 2013 at 2:42 am
He told me that either way (surgery or no), my chances of survival are exactly the same. I'm not sure how this could be. While the treatments for melanoma aren't many, we do have SOME weapons in the arsenal.
This statement goes hand in hand with with your first line – the LND is not curative but only used for staging. I'm not sure why you are questioning your chances of survival with/without surgery. The point is that yes, there are treatments, but the treatments exist regardless of whether you have the LND or not. The standard of care is the LND, but there are certainly reasons enough to consider not doing it especially when your sentinel node showed such little disease. The only other thing that comes to mind for me is that some clinical trials do require you to have had the LND. If you were going to look at clinical trials now, then you might double check because the LND may be a requirement. If you are just planning on doing no adjuvant therapy or doing Interferon (the only approved adjuvant therapy for stage III) – then you can consider both options.
Best wishes,
Janner
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- March 6, 2013 at 2:42 am
He told me that either way (surgery or no), my chances of survival are exactly the same. I'm not sure how this could be. While the treatments for melanoma aren't many, we do have SOME weapons in the arsenal.
This statement goes hand in hand with with your first line – the LND is not curative but only used for staging. I'm not sure why you are questioning your chances of survival with/without surgery. The point is that yes, there are treatments, but the treatments exist regardless of whether you have the LND or not. The standard of care is the LND, but there are certainly reasons enough to consider not doing it especially when your sentinel node showed such little disease. The only other thing that comes to mind for me is that some clinical trials do require you to have had the LND. If you were going to look at clinical trials now, then you might double check because the LND may be a requirement. If you are just planning on doing no adjuvant therapy or doing Interferon (the only approved adjuvant therapy for stage III) – then you can consider both options.
Best wishes,
Janner
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- March 6, 2013 at 3:13 am
I guess I just thought that having the surgery would somehow increase my chances of survival by removing any potential current disease in my lymph nodes, preventing them from circulating and colonizing in my body.
I'm just having a very hard time with this. I'm scared and feel like I can't make a proper decision.
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- March 6, 2013 at 3:13 am
I guess I just thought that having the surgery would somehow increase my chances of survival by removing any potential current disease in my lymph nodes, preventing them from circulating and colonizing in my body.
I'm just having a very hard time with this. I'm scared and feel like I can't make a proper decision.
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- March 6, 2013 at 3:21 am
It's gong to be hard to get an unbiased opinion here as most who are stage III+ have done the LND. As I said before and your two oncologists confirmed, it is the standard of care (rightly or wrongly given no increase in survival benefit). In years past, it was done for everyone. No sentinel node biopsy done at all before the mid 1990's. But if you did a straw poll of those who progressed on this site from stage III to stage IV, I would wager a bet that most had the LND. I'm not trying to muddy the water for you. There is no right answer here, only the treatment that you can live with.
Best wishes,
Janner
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- March 6, 2013 at 3:21 am
It's gong to be hard to get an unbiased opinion here as most who are stage III+ have done the LND. As I said before and your two oncologists confirmed, it is the standard of care (rightly or wrongly given no increase in survival benefit). In years past, it was done for everyone. No sentinel node biopsy done at all before the mid 1990's. But if you did a straw poll of those who progressed on this site from stage III to stage IV, I would wager a bet that most had the LND. I'm not trying to muddy the water for you. There is no right answer here, only the treatment that you can live with.
Best wishes,
Janner
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- March 6, 2013 at 3:21 am
It's gong to be hard to get an unbiased opinion here as most who are stage III+ have done the LND. As I said before and your two oncologists confirmed, it is the standard of care (rightly or wrongly given no increase in survival benefit). In years past, it was done for everyone. No sentinel node biopsy done at all before the mid 1990's. But if you did a straw poll of those who progressed on this site from stage III to stage IV, I would wager a bet that most had the LND. I'm not trying to muddy the water for you. There is no right answer here, only the treatment that you can live with.
Best wishes,
Janner
-
- March 6, 2013 at 3:13 am
I guess I just thought that having the surgery would somehow increase my chances of survival by removing any potential current disease in my lymph nodes, preventing them from circulating and colonizing in my body.
I'm just having a very hard time with this. I'm scared and feel like I can't make a proper decision.
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- March 6, 2013 at 4:27 am
My husband chose not to have the LND. We did the watch and wait because the SN was clear. His traveled through his blood and metastisized in the liver and lungs. So even if you have the LND it is not guarantee that it will not show up in the internal organs as his did.
He did a clinical trial and is now NED (no evidence of disease) but before the clinical trial he had 4 surgeries and everything was in the all clear after each surgery with wide margins and no site of any problem. His first surgery was for a 10.5 mm depth melanoma with ulceration and he started out staged at IIIC. Melanoma is a nasty beast so only you know what feels right for you.
But I do believe that a good positive attitude does help. Set your mind and attitude, go with your gut of what you think would be right and go for it never looking back as this is not something you can second guess. Just do what feels right for you.
Judy (loving wife of Gene)
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- March 6, 2013 at 4:27 am
My husband chose not to have the LND. We did the watch and wait because the SN was clear. His traveled through his blood and metastisized in the liver and lungs. So even if you have the LND it is not guarantee that it will not show up in the internal organs as his did.
He did a clinical trial and is now NED (no evidence of disease) but before the clinical trial he had 4 surgeries and everything was in the all clear after each surgery with wide margins and no site of any problem. His first surgery was for a 10.5 mm depth melanoma with ulceration and he started out staged at IIIC. Melanoma is a nasty beast so only you know what feels right for you.
But I do believe that a good positive attitude does help. Set your mind and attitude, go with your gut of what you think would be right and go for it never looking back as this is not something you can second guess. Just do what feels right for you.
Judy (loving wife of Gene)
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- March 6, 2013 at 4:27 am
My husband chose not to have the LND. We did the watch and wait because the SN was clear. His traveled through his blood and metastisized in the liver and lungs. So even if you have the LND it is not guarantee that it will not show up in the internal organs as his did.
He did a clinical trial and is now NED (no evidence of disease) but before the clinical trial he had 4 surgeries and everything was in the all clear after each surgery with wide margins and no site of any problem. His first surgery was for a 10.5 mm depth melanoma with ulceration and he started out staged at IIIC. Melanoma is a nasty beast so only you know what feels right for you.
But I do believe that a good positive attitude does help. Set your mind and attitude, go with your gut of what you think would be right and go for it never looking back as this is not something you can second guess. Just do what feels right for you.
Judy (loving wife of Gene)
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- March 6, 2013 at 4:36 am
here's the thing. STATISTICALLY an lnd does not improve your chances. Always remember, you are not a statistic, you are a person. Still a LND is something you should think about before you do
Because, what it does increase for sure, is your chance of lymphadema
and here's another thing, melanoma can and does travel without using the lympathic system.
I was staged 3B with no lymph node involvement back in 2003, because I had in transit mets. so.. it was traveling between the site on my arm, and my axillary basin. my SNB showed no sign of lymph node involvement.
I advanced to stage IV without lymph node OR organ involvement, when I developed distant sub cutaneous tumors far away from any of my previous primary or recurrent melanoma. Still no lymph node involvement. Now I have lung tumors, still no lymph node involvement.
Since I've been here on this board, I cannot even tell you how many people have had total lymph node dissections in a situation like yours, ..some small amount in their sentinal node biopsy, and MOST of the time, when they go in and have the total lnd done, no other melanoma has been found. So they've had all their lymph node taken out and nothing else has been found.
Some of those people will progress, and some of them won't. And plenty of people, like me, who had completely negative SNB's and have never had lymph node involvement will still progress.
And here's another thing…if there IS some kind of melanoma still in your lymph nodes.. it's going to grow there. They'll be checking your lymph nodes at follow up visits, and if you have an infected node, it's going to enlarge, and will be felt, so you could go back in then and have some or all of them removed.
As Janner has mentioned, LND is the standard of care, so most docs are going to recommend it. And most of us would do it, for that reason, and for the reasons you mention..the idea that you might be able to make a difference.
But you should weigh your options. Because sometimes a total lymph node dissection makes for a lotta years of misery all on it's own. LND have serious consequences, including sometimes life changing lymphadema. Something I never even HEARD of before I came here. In fact, I remember when my surgeon talked to me prior to my SNB, she told me that if she had positive evidence of lymph node involvement during my SNB, she'd go ahead and do a full dissection.. she never even discussed the side effects with me!! that was a month before I found this message board. I'm glad I didn't wake up to it being a done deal, though, at the time, I am sure I would have done whatever my surgeon suggested.
I'm betting there are a number of people on this board who DID have total lymph node dissections and never progressed too. I can only think of one off hand. That would be an interesting study to do.
Your last sentence is of most interest to me. I want to say that it is TOTALLY normal to be scared, and indecisive. It feels like any decision you make is SO important and that if you make the wrong one you could wreck your life or even die. And making the decision is always tough, one never feels like they have enough info. I was just telling someone today, I do not know how anyone who is downright stupid makes it through this process alive. I am not the sharpest knife in the drawer myself, but I spend an enormous amount of time learning about this disease just to get by.
But.. you WILL make a decision, simply because you have to. and almost as soon as you make a decision, things will feel better. Some relief will come to you, just getting that part done. Then you'll just move on, making one decision after another. Learn as much as you can, and trust your instincts.
It's a whole new world, but you'll get used to it.
dian in spokane
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- March 6, 2013 at 4:36 am
here's the thing. STATISTICALLY an lnd does not improve your chances. Always remember, you are not a statistic, you are a person. Still a LND is something you should think about before you do
Because, what it does increase for sure, is your chance of lymphadema
and here's another thing, melanoma can and does travel without using the lympathic system.
I was staged 3B with no lymph node involvement back in 2003, because I had in transit mets. so.. it was traveling between the site on my arm, and my axillary basin. my SNB showed no sign of lymph node involvement.
I advanced to stage IV without lymph node OR organ involvement, when I developed distant sub cutaneous tumors far away from any of my previous primary or recurrent melanoma. Still no lymph node involvement. Now I have lung tumors, still no lymph node involvement.
Since I've been here on this board, I cannot even tell you how many people have had total lymph node dissections in a situation like yours, ..some small amount in their sentinal node biopsy, and MOST of the time, when they go in and have the total lnd done, no other melanoma has been found. So they've had all their lymph node taken out and nothing else has been found.
Some of those people will progress, and some of them won't. And plenty of people, like me, who had completely negative SNB's and have never had lymph node involvement will still progress.
And here's another thing…if there IS some kind of melanoma still in your lymph nodes.. it's going to grow there. They'll be checking your lymph nodes at follow up visits, and if you have an infected node, it's going to enlarge, and will be felt, so you could go back in then and have some or all of them removed.
As Janner has mentioned, LND is the standard of care, so most docs are going to recommend it. And most of us would do it, for that reason, and for the reasons you mention..the idea that you might be able to make a difference.
But you should weigh your options. Because sometimes a total lymph node dissection makes for a lotta years of misery all on it's own. LND have serious consequences, including sometimes life changing lymphadema. Something I never even HEARD of before I came here. In fact, I remember when my surgeon talked to me prior to my SNB, she told me that if she had positive evidence of lymph node involvement during my SNB, she'd go ahead and do a full dissection.. she never even discussed the side effects with me!! that was a month before I found this message board. I'm glad I didn't wake up to it being a done deal, though, at the time, I am sure I would have done whatever my surgeon suggested.
I'm betting there are a number of people on this board who DID have total lymph node dissections and never progressed too. I can only think of one off hand. That would be an interesting study to do.
Your last sentence is of most interest to me. I want to say that it is TOTALLY normal to be scared, and indecisive. It feels like any decision you make is SO important and that if you make the wrong one you could wreck your life or even die. And making the decision is always tough, one never feels like they have enough info. I was just telling someone today, I do not know how anyone who is downright stupid makes it through this process alive. I am not the sharpest knife in the drawer myself, but I spend an enormous amount of time learning about this disease just to get by.
But.. you WILL make a decision, simply because you have to. and almost as soon as you make a decision, things will feel better. Some relief will come to you, just getting that part done. Then you'll just move on, making one decision after another. Learn as much as you can, and trust your instincts.
It's a whole new world, but you'll get used to it.
dian in spokane
-
- March 6, 2013 at 4:36 am
here's the thing. STATISTICALLY an lnd does not improve your chances. Always remember, you are not a statistic, you are a person. Still a LND is something you should think about before you do
Because, what it does increase for sure, is your chance of lymphadema
and here's another thing, melanoma can and does travel without using the lympathic system.
I was staged 3B with no lymph node involvement back in 2003, because I had in transit mets. so.. it was traveling between the site on my arm, and my axillary basin. my SNB showed no sign of lymph node involvement.
I advanced to stage IV without lymph node OR organ involvement, when I developed distant sub cutaneous tumors far away from any of my previous primary or recurrent melanoma. Still no lymph node involvement. Now I have lung tumors, still no lymph node involvement.
Since I've been here on this board, I cannot even tell you how many people have had total lymph node dissections in a situation like yours, ..some small amount in their sentinal node biopsy, and MOST of the time, when they go in and have the total lnd done, no other melanoma has been found. So they've had all their lymph node taken out and nothing else has been found.
Some of those people will progress, and some of them won't. And plenty of people, like me, who had completely negative SNB's and have never had lymph node involvement will still progress.
And here's another thing…if there IS some kind of melanoma still in your lymph nodes.. it's going to grow there. They'll be checking your lymph nodes at follow up visits, and if you have an infected node, it's going to enlarge, and will be felt, so you could go back in then and have some or all of them removed.
As Janner has mentioned, LND is the standard of care, so most docs are going to recommend it. And most of us would do it, for that reason, and for the reasons you mention..the idea that you might be able to make a difference.
But you should weigh your options. Because sometimes a total lymph node dissection makes for a lotta years of misery all on it's own. LND have serious consequences, including sometimes life changing lymphadema. Something I never even HEARD of before I came here. In fact, I remember when my surgeon talked to me prior to my SNB, she told me that if she had positive evidence of lymph node involvement during my SNB, she'd go ahead and do a full dissection.. she never even discussed the side effects with me!! that was a month before I found this message board. I'm glad I didn't wake up to it being a done deal, though, at the time, I am sure I would have done whatever my surgeon suggested.
I'm betting there are a number of people on this board who DID have total lymph node dissections and never progressed too. I can only think of one off hand. That would be an interesting study to do.
Your last sentence is of most interest to me. I want to say that it is TOTALLY normal to be scared, and indecisive. It feels like any decision you make is SO important and that if you make the wrong one you could wreck your life or even die. And making the decision is always tough, one never feels like they have enough info. I was just telling someone today, I do not know how anyone who is downright stupid makes it through this process alive. I am not the sharpest knife in the drawer myself, but I spend an enormous amount of time learning about this disease just to get by.
But.. you WILL make a decision, simply because you have to. and almost as soon as you make a decision, things will feel better. Some relief will come to you, just getting that part done. Then you'll just move on, making one decision after another. Learn as much as you can, and trust your instincts.
It's a whole new world, but you'll get used to it.
dian in spokane
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- March 6, 2013 at 12:59 pm
Hi, Bunmom-
You have gotten a lot of really good advice already so you probably don't need my 2 cents. However, for what it's worth…
There is currently a clinical trial being conducted specifically to address the question of the benefits of CLND for patients who have a positive sentinel lymph node (ClinicalTrials.gov Identifier: NCT00297895 ). Actually, this trial has been going on since 2004 and is still recruiting. There are 2 study arms: one arm will get CLND and the other arm will get routine nodal ultrasounds and only have a CLND if a positive node appears. They intend to do this for 10 years. Unfortunately, there are no sites in Northern California and only 2 in Southern California so that will probably not be convenient for you.
But the important points are: 1) even the melanoma surgeons don't know which method is better, which is why they are doing this clinical trial, and 2) your choice is not between CLND or "do nothing" but between CLND and active, frequent monitoring via ultrasound. To me, the ultrasound approach is ACTIVE surveillence not just "doing nothing".
So as others on this thread have said, you have to choose the approach that is most comfortable for you. If (God forbid) 3 years or 6 years from now you discover that you have progressed to stage IV, will you kick yourself for not having the CLND? Or will you be able to say, "I probably would have progressed with or without the CLND so now we just have to deal with this stage IV." One of the most important things to learn about living with melanoma is that all you can do is make the best decision you can based on the information you have at the time and then move on. Never look back, never second-guess yourself. Because nobody ever KNOWS the "right answer".
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- March 6, 2013 at 12:59 pm
Hi, Bunmom-
You have gotten a lot of really good advice already so you probably don't need my 2 cents. However, for what it's worth…
There is currently a clinical trial being conducted specifically to address the question of the benefits of CLND for patients who have a positive sentinel lymph node (ClinicalTrials.gov Identifier: NCT00297895 ). Actually, this trial has been going on since 2004 and is still recruiting. There are 2 study arms: one arm will get CLND and the other arm will get routine nodal ultrasounds and only have a CLND if a positive node appears. They intend to do this for 10 years. Unfortunately, there are no sites in Northern California and only 2 in Southern California so that will probably not be convenient for you.
But the important points are: 1) even the melanoma surgeons don't know which method is better, which is why they are doing this clinical trial, and 2) your choice is not between CLND or "do nothing" but between CLND and active, frequent monitoring via ultrasound. To me, the ultrasound approach is ACTIVE surveillence not just "doing nothing".
So as others on this thread have said, you have to choose the approach that is most comfortable for you. If (God forbid) 3 years or 6 years from now you discover that you have progressed to stage IV, will you kick yourself for not having the CLND? Or will you be able to say, "I probably would have progressed with or without the CLND so now we just have to deal with this stage IV." One of the most important things to learn about living with melanoma is that all you can do is make the best decision you can based on the information you have at the time and then move on. Never look back, never second-guess yourself. Because nobody ever KNOWS the "right answer".
-
- March 6, 2013 at 12:59 pm
Hi, Bunmom-
You have gotten a lot of really good advice already so you probably don't need my 2 cents. However, for what it's worth…
There is currently a clinical trial being conducted specifically to address the question of the benefits of CLND for patients who have a positive sentinel lymph node (ClinicalTrials.gov Identifier: NCT00297895 ). Actually, this trial has been going on since 2004 and is still recruiting. There are 2 study arms: one arm will get CLND and the other arm will get routine nodal ultrasounds and only have a CLND if a positive node appears. They intend to do this for 10 years. Unfortunately, there are no sites in Northern California and only 2 in Southern California so that will probably not be convenient for you.
But the important points are: 1) even the melanoma surgeons don't know which method is better, which is why they are doing this clinical trial, and 2) your choice is not between CLND or "do nothing" but between CLND and active, frequent monitoring via ultrasound. To me, the ultrasound approach is ACTIVE surveillence not just "doing nothing".
So as others on this thread have said, you have to choose the approach that is most comfortable for you. If (God forbid) 3 years or 6 years from now you discover that you have progressed to stage IV, will you kick yourself for not having the CLND? Or will you be able to say, "I probably would have progressed with or without the CLND so now we just have to deal with this stage IV." One of the most important things to learn about living with melanoma is that all you can do is make the best decision you can based on the information you have at the time and then move on. Never look back, never second-guess yourself. Because nobody ever KNOWS the "right answer".
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- March 6, 2013 at 11:41 pm
"He said the ONLY reason for this surgery is to determine if my other nodes have mets." That's one heck of a good reason for the surgery! However (isn't there always one of those), I really do not know of anyone with 1 or 2 micro-mets that have had a complete lymph node dissection where they found any thing else in the lymph nodes. That doesn't mean that eventually they didn't progress to stage 4 but at the time of surgery those particular nodes were clear. Maybe someone who has been on this board longer can correct me if I am wrong, I have never seen any published statistics.
I must tell you I think your fear of the surgery is a little unwarranted. As I has said before, I have had most of the side effects and I would do it all over again. I would think the biggest concern for you regarding the surgery if you decide to go that route is do you have someone to help you with you kids while you have the drains in. Everything else is manageable and will decrease over time.
But as everyone has said, it is a decision that only you can make.
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- March 6, 2013 at 11:41 pm
"He said the ONLY reason for this surgery is to determine if my other nodes have mets." That's one heck of a good reason for the surgery! However (isn't there always one of those), I really do not know of anyone with 1 or 2 micro-mets that have had a complete lymph node dissection where they found any thing else in the lymph nodes. That doesn't mean that eventually they didn't progress to stage 4 but at the time of surgery those particular nodes were clear. Maybe someone who has been on this board longer can correct me if I am wrong, I have never seen any published statistics.
I must tell you I think your fear of the surgery is a little unwarranted. As I has said before, I have had most of the side effects and I would do it all over again. I would think the biggest concern for you regarding the surgery if you decide to go that route is do you have someone to help you with you kids while you have the drains in. Everything else is manageable and will decrease over time.
But as everyone has said, it is a decision that only you can make.
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- March 6, 2013 at 11:41 pm
"He said the ONLY reason for this surgery is to determine if my other nodes have mets." That's one heck of a good reason for the surgery! However (isn't there always one of those), I really do not know of anyone with 1 or 2 micro-mets that have had a complete lymph node dissection where they found any thing else in the lymph nodes. That doesn't mean that eventually they didn't progress to stage 4 but at the time of surgery those particular nodes were clear. Maybe someone who has been on this board longer can correct me if I am wrong, I have never seen any published statistics.
I must tell you I think your fear of the surgery is a little unwarranted. As I has said before, I have had most of the side effects and I would do it all over again. I would think the biggest concern for you regarding the surgery if you decide to go that route is do you have someone to help you with you kids while you have the drains in. Everything else is manageable and will decrease over time.
But as everyone has said, it is a decision that only you can make.
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