› Forums › General Melanoma Community › Is CLND sill a good option for positive SLN?
- This topic has 48 replies, 9 voices, and was last updated 7 years, 8 months ago by
dmturner.
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- May 27, 2016 at 1:04 am
Hello Everyone,
I'm looking into options and problems with Complete Lymph Node Dissection of my right groin and I'm getting more confused the more I search.
In March I was diagnosed with melanoma on my right calf. In April I underwent wide local excision and sentinel lymph node biopsy. The sentinel lymph node was positive for melanoma with immunohistochemical stains for Melan A and S100 but not with routine staining.
My staging is pT2a PN1a
My onocology sugeon is reccomending that I have CLND because it is still considered standard treatment. He also said that there is ongoing research that may change that but it is what he reccomends currently. I am very concerned about potential side effects such as lymphedema. I also was told that I will need to wear compression hose most of the day pretty much forever. I also am wondering if removing those lymph nodes may have a negative impact on some of the newer immunotherapy drugs and if I they still will be effective without them.
My goal is to live as long as possible and if this surgery would increase my survival rate I would definitely have the surgery but I have also read that it might decrease survival. Any suggestions or insight about the procedure or complications would be very helpful.
I will meet with the Melanoma Specialist soon and would like to have clear questions to ask him about my options.
Thank You!
- Replies
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- May 27, 2016 at 1:43 am
From what I have read studies are showing that getting a CLND does not affect overall survival. Basically survival stays the same with or without it is how I've heard it talked about.
I had a sentinel lymph node biopsy in my left groin, and where I get treated at UCSF they do not recommend CLND anymore, due to the evidence that it doesn't show to improve survival and it causes a lot of issues like lymphedema. I had positive lymph nodes as well, making me stage 3b. I started Yervoy (Ipi) and have done well on that. I do not think removing lymph nodes affects how immunotherapy works at all.
It's really up to you whether you want to do the complete dissection or not, it's a personal decision, and it's good you're looking into options as far as whether you really need it or not.
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- May 27, 2016 at 1:43 am
From what I have read studies are showing that getting a CLND does not affect overall survival. Basically survival stays the same with or without it is how I've heard it talked about.
I had a sentinel lymph node biopsy in my left groin, and where I get treated at UCSF they do not recommend CLND anymore, due to the evidence that it doesn't show to improve survival and it causes a lot of issues like lymphedema. I had positive lymph nodes as well, making me stage 3b. I started Yervoy (Ipi) and have done well on that. I do not think removing lymph nodes affects how immunotherapy works at all.
It's really up to you whether you want to do the complete dissection or not, it's a personal decision, and it's good you're looking into options as far as whether you really need it or not.
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- May 27, 2016 at 1:45 am
Not sure if it was clear, but I did not get a CLND, I started Ipi about a month after my lymph node biopsy and that's it 🙂
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- May 27, 2016 at 1:45 am
Not sure if it was clear, but I did not get a CLND, I started Ipi about a month after my lymph node biopsy and that's it 🙂
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- May 27, 2016 at 1:45 am
Not sure if it was clear, but I did not get a CLND, I started Ipi about a month after my lymph node biopsy and that's it 🙂
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- May 27, 2016 at 1:43 am
From what I have read studies are showing that getting a CLND does not affect overall survival. Basically survival stays the same with or without it is how I've heard it talked about.
I had a sentinel lymph node biopsy in my left groin, and where I get treated at UCSF they do not recommend CLND anymore, due to the evidence that it doesn't show to improve survival and it causes a lot of issues like lymphedema. I had positive lymph nodes as well, making me stage 3b. I started Yervoy (Ipi) and have done well on that. I do not think removing lymph nodes affects how immunotherapy works at all.
It's really up to you whether you want to do the complete dissection or not, it's a personal decision, and it's good you're looking into options as far as whether you really need it or not.
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- May 27, 2016 at 2:40 am
It's a tough call. Trying to put myself in your shoes and sitting here thinking about it logically based on the recent studies I think the answer is no to CLND. But when I go back a few years ago to when I was in your same situation and I wanted to do anything and everything I could to improve my chances by even just a few percentage points then I don't know what I would do if I was in your shoes. A few years ago it wasn't even a consideration not to do the CLND. Like Jenn said it is definitely a personal choice and I don't think either choice is wrong at this point.
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- May 27, 2016 at 2:40 am
It's a tough call. Trying to put myself in your shoes and sitting here thinking about it logically based on the recent studies I think the answer is no to CLND. But when I go back a few years ago to when I was in your same situation and I wanted to do anything and everything I could to improve my chances by even just a few percentage points then I don't know what I would do if I was in your shoes. A few years ago it wasn't even a consideration not to do the CLND. Like Jenn said it is definitely a personal choice and I don't think either choice is wrong at this point.
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- May 27, 2016 at 2:40 am
It's a tough call. Trying to put myself in your shoes and sitting here thinking about it logically based on the recent studies I think the answer is no to CLND. But when I go back a few years ago to when I was in your same situation and I wanted to do anything and everything I could to improve my chances by even just a few percentage points then I don't know what I would do if I was in your shoes. A few years ago it wasn't even a consideration not to do the CLND. Like Jenn said it is definitely a personal choice and I don't think either choice is wrong at this point.
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- May 27, 2016 at 6:44 am
My primary was on my forearm and my 'secondaries' are in my armpit. I am stage 3C. Because I am phobic of doctors and hospitals, I refused a CLND.
While I was refusing, my doctor did everything she could to persuade me to go forward with the surgery because that was the recommended treatment. We went through all the statistics together. The bottom line was that there was an 80% chance that the melanoma would come back even if I had the surgery, the chance of significant lymphodema was about 50% and the chance that the function of my hand would be significantly affected was at about 25%. There was a chance I would not even be able to hold a pen or operate a keyboard.
Would I have gone forward with the surgery if I didn't have the phobia? I don't know. I do know that we wouldn't have had that detailed discussion.
So I suggest you have that level of discussion with your melanoma specialist.
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- May 27, 2016 at 6:44 am
My primary was on my forearm and my 'secondaries' are in my armpit. I am stage 3C. Because I am phobic of doctors and hospitals, I refused a CLND.
While I was refusing, my doctor did everything she could to persuade me to go forward with the surgery because that was the recommended treatment. We went through all the statistics together. The bottom line was that there was an 80% chance that the melanoma would come back even if I had the surgery, the chance of significant lymphodema was about 50% and the chance that the function of my hand would be significantly affected was at about 25%. There was a chance I would not even be able to hold a pen or operate a keyboard.
Would I have gone forward with the surgery if I didn't have the phobia? I don't know. I do know that we wouldn't have had that detailed discussion.
So I suggest you have that level of discussion with your melanoma specialist.
-
- May 27, 2016 at 6:44 am
My primary was on my forearm and my 'secondaries' are in my armpit. I am stage 3C. Because I am phobic of doctors and hospitals, I refused a CLND.
While I was refusing, my doctor did everything she could to persuade me to go forward with the surgery because that was the recommended treatment. We went through all the statistics together. The bottom line was that there was an 80% chance that the melanoma would come back even if I had the surgery, the chance of significant lymphodema was about 50% and the chance that the function of my hand would be significantly affected was at about 25%. There was a chance I would not even be able to hold a pen or operate a keyboard.
Would I have gone forward with the surgery if I didn't have the phobia? I don't know. I do know that we wouldn't have had that detailed discussion.
So I suggest you have that level of discussion with your melanoma specialist.
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- May 27, 2016 at 11:37 am
As most have mentioned….CLND is surrounded by murky waters. Here is the actual data from the Sunbelt Melanoma Trial, published in Feb of this year…with a link to another report within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html
Whatever you decide…I wish you my best. Celeste
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- May 27, 2016 at 11:37 am
As most have mentioned….CLND is surrounded by murky waters. Here is the actual data from the Sunbelt Melanoma Trial, published in Feb of this year…with a link to another report within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html
Whatever you decide…I wish you my best. Celeste
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- May 27, 2016 at 11:37 am
As most have mentioned….CLND is surrounded by murky waters. Here is the actual data from the Sunbelt Melanoma Trial, published in Feb of this year…with a link to another report within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html
Whatever you decide…I wish you my best. Celeste
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- May 27, 2016 at 1:27 pm
Hi Terisaly T, I would like to add just a little to what has already been given to you. http://www.cancernetwork.com/asco-2015-melanoma/no-need-lymph-node-dissection-certain-melanoma-patients . This article from last year is helpfull but it kind of leaves patients hanging, wait untill 2022 for MSLT-11 data or make a decision on the German study!!!! One thing to think about is cutting out immune system lymph nodes, may not be the best idea for those who do progress and start Immunotherapy drugs like Ipi,Nivo or Pembro. Ipi has as a target t-cell which are in the lymph nodes. Another question to ask your Oncologist is if you don't remove the lymph nodes will it have any effect on getting into clinical trials down the road? Best wishes!!! Ed
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- May 27, 2016 at 1:27 pm
Hi Terisaly T, I would like to add just a little to what has already been given to you. http://www.cancernetwork.com/asco-2015-melanoma/no-need-lymph-node-dissection-certain-melanoma-patients . This article from last year is helpfull but it kind of leaves patients hanging, wait untill 2022 for MSLT-11 data or make a decision on the German study!!!! One thing to think about is cutting out immune system lymph nodes, may not be the best idea for those who do progress and start Immunotherapy drugs like Ipi,Nivo or Pembro. Ipi has as a target t-cell which are in the lymph nodes. Another question to ask your Oncologist is if you don't remove the lymph nodes will it have any effect on getting into clinical trials down the road? Best wishes!!! Ed
-
- May 27, 2016 at 1:27 pm
Hi Terisaly T, I would like to add just a little to what has already been given to you. http://www.cancernetwork.com/asco-2015-melanoma/no-need-lymph-node-dissection-certain-melanoma-patients . This article from last year is helpfull but it kind of leaves patients hanging, wait untill 2022 for MSLT-11 data or make a decision on the German study!!!! One thing to think about is cutting out immune system lymph nodes, may not be the best idea for those who do progress and start Immunotherapy drugs like Ipi,Nivo or Pembro. Ipi has as a target t-cell which are in the lymph nodes. Another question to ask your Oncologist is if you don't remove the lymph nodes will it have any effect on getting into clinical trials down the road? Best wishes!!! Ed
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- May 27, 2016 at 10:39 pm
Ed, Thanks, I think that's one of the articles I saw that first made me think perhaps I should do more research. In addition to complications, I am particularly concerned about the effect on my overall immune system and how the newer drugs would work without those lymph nodes. These are good questions to ask the onocologist. Teri
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- May 27, 2016 at 10:39 pm
Ed, Thanks, I think that's one of the articles I saw that first made me think perhaps I should do more research. In addition to complications, I am particularly concerned about the effect on my overall immune system and how the newer drugs would work without those lymph nodes. These are good questions to ask the onocologist. Teri
-
- May 27, 2016 at 10:39 pm
Ed, Thanks, I think that's one of the articles I saw that first made me think perhaps I should do more research. In addition to complications, I am particularly concerned about the effect on my overall immune system and how the newer drugs would work without those lymph nodes. These are good questions to ask the onocologist. Teri
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- May 27, 2016 at 6:30 pm
Always a tough call and as you and others have pointed out, the data comes across as a little murky. I was diagnosed with two positive nodes, also in my right groin. After consulting with my surgeon and oncologist, I decided to have the CLND. Primary reason? I was not comfortable with simply watchfully waiting. Totally personal call. I had a post op infection which brought me back to the hospital for a week for IV antibiotics. I wore a compression stocking from about April-December of 2012. Other than that, the procedure was definitely tolerable. The only side effect is a little residual numbness (my surgeon said it usually resolves after 7 years) and once in a while my ankle will get slightly swollen. When that does happen it's typically back to normal the next morning. My surgeon recommended staying active, which I do and try to exercise which I also do.
i think there are risk factors you can discuss (weight, other conditions) which may gauge your potential for side effects. Would I recommend it? As all have said….personal decision. Personally, I am satisfied with my decision and like another respondee mentioned, I wanted to take every reasonable available step. By the way, I did participate in a clinical trial some months after my surgery. CLND was not a disqualifier.
Good luck….as Celeste mentioned "we've come a long way baby" in the development of options and therapies that look increasingly promising.
Regards and all the best,
Stan
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- May 27, 2016 at 6:30 pm
Always a tough call and as you and others have pointed out, the data comes across as a little murky. I was diagnosed with two positive nodes, also in my right groin. After consulting with my surgeon and oncologist, I decided to have the CLND. Primary reason? I was not comfortable with simply watchfully waiting. Totally personal call. I had a post op infection which brought me back to the hospital for a week for IV antibiotics. I wore a compression stocking from about April-December of 2012. Other than that, the procedure was definitely tolerable. The only side effect is a little residual numbness (my surgeon said it usually resolves after 7 years) and once in a while my ankle will get slightly swollen. When that does happen it's typically back to normal the next morning. My surgeon recommended staying active, which I do and try to exercise which I also do.
i think there are risk factors you can discuss (weight, other conditions) which may gauge your potential for side effects. Would I recommend it? As all have said….personal decision. Personally, I am satisfied with my decision and like another respondee mentioned, I wanted to take every reasonable available step. By the way, I did participate in a clinical trial some months after my surgery. CLND was not a disqualifier.
Good luck….as Celeste mentioned "we've come a long way baby" in the development of options and therapies that look increasingly promising.
Regards and all the best,
Stan
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- May 27, 2016 at 10:50 pm
Stan, Thanks for the information. I think you are the first person to have the exact procedure. If you don't mind I have several questions.
How long did your initial recovery take?
How long before you were able to exercise? I usually walk the dogs every day for 3-4 miles and would want to get back to that as soon as I could.
How much pain did you have and for how long?
Do you have to be careful with getiing bug bites or scratches on your leg?
Again thanks, I hope things are going well with your treatment.
Teri
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- May 27, 2016 at 10:50 pm
Stan, Thanks for the information. I think you are the first person to have the exact procedure. If you don't mind I have several questions.
How long did your initial recovery take?
How long before you were able to exercise? I usually walk the dogs every day for 3-4 miles and would want to get back to that as soon as I could.
How much pain did you have and for how long?
Do you have to be careful with getiing bug bites or scratches on your leg?
Again thanks, I hope things are going well with your treatment.
Teri
-
- May 27, 2016 at 10:50 pm
Stan, Thanks for the information. I think you are the first person to have the exact procedure. If you don't mind I have several questions.
How long did your initial recovery take?
How long before you were able to exercise? I usually walk the dogs every day for 3-4 miles and would want to get back to that as soon as I could.
How much pain did you have and for how long?
Do you have to be careful with getiing bug bites or scratches on your leg?
Again thanks, I hope things are going well with your treatment.
Teri
-
- May 28, 2016 at 3:47 am
Hey Teri,
in answer to your questions:
Recovery was about 8 weeks. However, that ncludes additional time due to the nfection. I was actually up and walking the evening if the procedure
I would say about 6-8 weeks. That's mostly a function of letting the wound heal, removal of the JP bulbs, etc. I physically felt fine and able to exercise within four weeks
Pain was not significant at all. A little bit of post surgical discomfort for a day or two. Minimal amount of pain melds were needed
Ive read about concerns regarding bug bites, I think most of the concern has to do with scratching, and irritating. I've had no issues and in fact have had surgery for bone spurs (unrelated ) on the foot of that leg without any issue whatsoever
hope that helps, and de free to ask,any other questions you may have!
-
- May 28, 2016 at 3:47 am
Hey Teri,
in answer to your questions:
Recovery was about 8 weeks. However, that ncludes additional time due to the nfection. I was actually up and walking the evening if the procedure
I would say about 6-8 weeks. That's mostly a function of letting the wound heal, removal of the JP bulbs, etc. I physically felt fine and able to exercise within four weeks
Pain was not significant at all. A little bit of post surgical discomfort for a day or two. Minimal amount of pain melds were needed
Ive read about concerns regarding bug bites, I think most of the concern has to do with scratching, and irritating. I've had no issues and in fact have had surgery for bone spurs (unrelated ) on the foot of that leg without any issue whatsoever
hope that helps, and de free to ask,any other questions you may have!
-
- May 28, 2016 at 3:47 am
Hey Teri,
in answer to your questions:
Recovery was about 8 weeks. However, that ncludes additional time due to the nfection. I was actually up and walking the evening if the procedure
I would say about 6-8 weeks. That's mostly a function of letting the wound heal, removal of the JP bulbs, etc. I physically felt fine and able to exercise within four weeks
Pain was not significant at all. A little bit of post surgical discomfort for a day or two. Minimal amount of pain melds were needed
Ive read about concerns regarding bug bites, I think most of the concern has to do with scratching, and irritating. I've had no issues and in fact have had surgery for bone spurs (unrelated ) on the foot of that leg without any issue whatsoever
hope that helps, and de free to ask,any other questions you may have!
-
- May 27, 2016 at 6:30 pm
Always a tough call and as you and others have pointed out, the data comes across as a little murky. I was diagnosed with two positive nodes, also in my right groin. After consulting with my surgeon and oncologist, I decided to have the CLND. Primary reason? I was not comfortable with simply watchfully waiting. Totally personal call. I had a post op infection which brought me back to the hospital for a week for IV antibiotics. I wore a compression stocking from about April-December of 2012. Other than that, the procedure was definitely tolerable. The only side effect is a little residual numbness (my surgeon said it usually resolves after 7 years) and once in a while my ankle will get slightly swollen. When that does happen it's typically back to normal the next morning. My surgeon recommended staying active, which I do and try to exercise which I also do.
i think there are risk factors you can discuss (weight, other conditions) which may gauge your potential for side effects. Would I recommend it? As all have said….personal decision. Personally, I am satisfied with my decision and like another respondee mentioned, I wanted to take every reasonable available step. By the way, I did participate in a clinical trial some months after my surgery. CLND was not a disqualifier.
Good luck….as Celeste mentioned "we've come a long way baby" in the development of options and therapies that look increasingly promising.
Regards and all the best,
Stan
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- May 29, 2016 at 4:06 am
Hi! I had a clnd in September 2015 at my right groin. Like every one else says, it is a personal decision. I also had thoughts of not doing it bc of the research coming out about it not prolonging survival rates. But at the end of the day, for me, all I could think is – I want the cancer out! I got an infection about a week after surgery and was in the hospital for 8 days. The infection rate of this surgery I believe is pretty high so also keep that in mind. I have suffered some minor lymphedema – mostly at my ankle. The feeling in my upper thigh area is numbish. Good luck with your decision! I don't think there isnt any right or wrong – just what is best for u. If u have any questions, feel free to reach out at anytime. [email protected]
Misty
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- May 29, 2016 at 4:06 am
Hi! I had a clnd in September 2015 at my right groin. Like every one else says, it is a personal decision. I also had thoughts of not doing it bc of the research coming out about it not prolonging survival rates. But at the end of the day, for me, all I could think is – I want the cancer out! I got an infection about a week after surgery and was in the hospital for 8 days. The infection rate of this surgery I believe is pretty high so also keep that in mind. I have suffered some minor lymphedema – mostly at my ankle. The feeling in my upper thigh area is numbish. Good luck with your decision! I don't think there isnt any right or wrong – just what is best for u. If u have any questions, feel free to reach out at anytime. [email protected]
Misty
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- May 29, 2016 at 4:06 am
Hi! I had a clnd in September 2015 at my right groin. Like every one else says, it is a personal decision. I also had thoughts of not doing it bc of the research coming out about it not prolonging survival rates. But at the end of the day, for me, all I could think is – I want the cancer out! I got an infection about a week after surgery and was in the hospital for 8 days. The infection rate of this surgery I believe is pretty high so also keep that in mind. I have suffered some minor lymphedema – mostly at my ankle. The feeling in my upper thigh area is numbish. Good luck with your decision! I don't think there isnt any right or wrong – just what is best for u. If u have any questions, feel free to reach out at anytime. [email protected]
Misty
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