› Forums › General Melanoma Community › Is removing lymph nodes worth it? Is Lymphodema a given?
- This topic has 27 replies, 7 voices, and was last updated 8 years, 2 months ago by
_Paul_.
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- January 27, 2016 at 1:37 am
I am getting opinions on treatment for a 1.3 mm melanoma on my leg that was removed and microscopic cells were found in 1 of 2 sentinel lymph nodes that were removed in my groin. My surgein is recommending all the lymph nodes be removed in that area – I am deathly afraid of getting lymphodema. It seems some people wait and see and then end up doing it. Please tell me if you had it, did they find melanoma in your other lymph nodes, do you have lymphodema? Is it as bad as I think – should I do it? Thank you to all – I have been so humbled by this experience that has changed my life 3 weeks ago, I am blown away by the generosity and kindness of strangers to help each other.
God Bless you ALL!!!!!
XOXO
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- January 27, 2016 at 2:24 am
I can only give you my experience. I had a 1.8 mm Mel on my back. Microscopic cells originally missed and then found. I went to memorial Sloan kettering then to hit this head on. I met with dr coit. He was very comfortable and almost encouraged no clnd- but I am a worrier and got it anyway. I did not have lymphodema – mine was left armpit. 34 nodes were removed…. All clear. I am still thankful I did the clnd for peace of mind- but is such a personal choice. The recovery did not seem challenging for me, so that is also a blessing. This was almost 2 yrs ago and still NED! I wish you confidence in your decision!
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- January 27, 2016 at 2:24 am
I can only give you my experience. I had a 1.8 mm Mel on my back. Microscopic cells originally missed and then found. I went to memorial Sloan kettering then to hit this head on. I met with dr coit. He was very comfortable and almost encouraged no clnd- but I am a worrier and got it anyway. I did not have lymphodema – mine was left armpit. 34 nodes were removed…. All clear. I am still thankful I did the clnd for peace of mind- but is such a personal choice. The recovery did not seem challenging for me, so that is also a blessing. This was almost 2 yrs ago and still NED! I wish you confidence in your decision!
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- January 27, 2016 at 2:24 am
I can only give you my experience. I had a 1.8 mm Mel on my back. Microscopic cells originally missed and then found. I went to memorial Sloan kettering then to hit this head on. I met with dr coit. He was very comfortable and almost encouraged no clnd- but I am a worrier and got it anyway. I did not have lymphodema – mine was left armpit. 34 nodes were removed…. All clear. I am still thankful I did the clnd for peace of mind- but is such a personal choice. The recovery did not seem challenging for me, so that is also a blessing. This was almost 2 yrs ago and still NED! I wish you confidence in your decision!
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- January 27, 2016 at 2:59 am
I had a lymphnode dissection last March, they removed 16 nodes, of those 5 tested positive for Melanoma. This was my right groin, after healing I went through 20 sessions of radiation. You mentioned your fear is the lymphodima, yes I have it. But really not too bad. Summer months I would do water exercise that really helped. Now during the winter I wear a compression sleeve on my leg, there are exercises to help and easy massage techniques. I would definitely do this again, get rid of that crap asap.
Good luck on this journey. Jamie
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- January 27, 2016 at 2:59 am
I had a lymphnode dissection last March, they removed 16 nodes, of those 5 tested positive for Melanoma. This was my right groin, after healing I went through 20 sessions of radiation. You mentioned your fear is the lymphodima, yes I have it. But really not too bad. Summer months I would do water exercise that really helped. Now during the winter I wear a compression sleeve on my leg, there are exercises to help and easy massage techniques. I would definitely do this again, get rid of that crap asap.
Good luck on this journey. Jamie
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- January 27, 2016 at 2:59 am
I had a lymphnode dissection last March, they removed 16 nodes, of those 5 tested positive for Melanoma. This was my right groin, after healing I went through 20 sessions of radiation. You mentioned your fear is the lymphodima, yes I have it. But really not too bad. Summer months I would do water exercise that really helped. Now during the winter I wear a compression sleeve on my leg, there are exercises to help and easy massage techniques. I would definitely do this again, get rid of that crap asap.
Good luck on this journey. Jamie
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- January 27, 2016 at 7:28 pm
I had mr Mel on my forearm macro met to give me a nice fat sentinel node -stage 3b. They took out 42 nodes with just the one positive. No lymphadema. I was 39 and thin. Still no problems 3 years later. I turned down the radiation. I went to mayo and I went with dr Jacobsen-the surgeon recommended. He said the radiation was like hitting a fly with a sledgehammer and said I definitely would have lymphadema if did the radiation and he personally would just do the surgery and skip the radiation. I'd go with a melanoma specialist specialist you trust and go off their advice. I'd go to one of the big 3-Sloan, Mayo, Md. They have seen a lot of melanoma patients and can give pretty good advice around the specifics of your case
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- January 27, 2016 at 7:28 pm
I had mr Mel on my forearm macro met to give me a nice fat sentinel node -stage 3b. They took out 42 nodes with just the one positive. No lymphadema. I was 39 and thin. Still no problems 3 years later. I turned down the radiation. I went to mayo and I went with dr Jacobsen-the surgeon recommended. He said the radiation was like hitting a fly with a sledgehammer and said I definitely would have lymphadema if did the radiation and he personally would just do the surgery and skip the radiation. I'd go with a melanoma specialist specialist you trust and go off their advice. I'd go to one of the big 3-Sloan, Mayo, Md. They have seen a lot of melanoma patients and can give pretty good advice around the specifics of your case
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- January 27, 2016 at 7:28 pm
I had mr Mel on my forearm macro met to give me a nice fat sentinel node -stage 3b. They took out 42 nodes with just the one positive. No lymphadema. I was 39 and thin. Still no problems 3 years later. I turned down the radiation. I went to mayo and I went with dr Jacobsen-the surgeon recommended. He said the radiation was like hitting a fly with a sledgehammer and said I definitely would have lymphadema if did the radiation and he personally would just do the surgery and skip the radiation. I'd go with a melanoma specialist specialist you trust and go off their advice. I'd go to one of the big 3-Sloan, Mayo, Md. They have seen a lot of melanoma patients and can give pretty good advice around the specifics of your case
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- January 28, 2016 at 2:06 am
I had 23 nodes removed from my left armpit in March 2013. All were clear after microscopic cells had been found in one sentinel node. So far I've never had an issue with lymphedema.
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- January 30, 2016 at 6:31 pm
Just wanted to add that my 26y/o son had a melanoma 1.1mm on his right bicep. Had micro in sentinel node and then had 23 nodes removed in the R arm axilla. All negative. He also had a new procedure called a lymph-venous bypass at UF in order to prevent lymphedema. It is only being done at a few major facilities for melanoma patients currently. So far no swelling at all. There are many different opinions about removing the nodes but it gives us peace of mind to know that the others were negative. The surgeon who did the lymphvenous bypass said it would decrease his chance of lymphedema down to 7%. So far no evidence of swelling and surgery was was in November. It was just added insurance as far as no swelling so he had it done.
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- January 30, 2016 at 6:31 pm
Just wanted to add that my 26y/o son had a melanoma 1.1mm on his right bicep. Had micro in sentinel node and then had 23 nodes removed in the R arm axilla. All negative. He also had a new procedure called a lymph-venous bypass at UF in order to prevent lymphedema. It is only being done at a few major facilities for melanoma patients currently. So far no swelling at all. There are many different opinions about removing the nodes but it gives us peace of mind to know that the others were negative. The surgeon who did the lymphvenous bypass said it would decrease his chance of lymphedema down to 7%. So far no evidence of swelling and surgery was was in November. It was just added insurance as far as no swelling so he had it done.
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- January 30, 2016 at 6:31 pm
Just wanted to add that my 26y/o son had a melanoma 1.1mm on his right bicep. Had micro in sentinel node and then had 23 nodes removed in the R arm axilla. All negative. He also had a new procedure called a lymph-venous bypass at UF in order to prevent lymphedema. It is only being done at a few major facilities for melanoma patients currently. So far no swelling at all. There are many different opinions about removing the nodes but it gives us peace of mind to know that the others were negative. The surgeon who did the lymphvenous bypass said it would decrease his chance of lymphedema down to 7%. So far no evidence of swelling and surgery was was in November. It was just added insurance as far as no swelling so he had it done.
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- February 3, 2016 at 7:17 pm
There is mounting evidence that a CLND does not offer significant benefits, as found in this German study:
There is a much larger study underway for the same thing but with a longer duration which will have long term survival statistics.
Also, given that immunotherapy antibodies combine with killer T-cells in your lymph nodes removing them may be harmful if one does advance to stage 4.
Wishing you the best – Paul
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- February 3, 2016 at 7:17 pm
There is mounting evidence that a CLND does not offer significant benefits, as found in this German study:
There is a much larger study underway for the same thing but with a longer duration which will have long term survival statistics.
Also, given that immunotherapy antibodies combine with killer T-cells in your lymph nodes removing them may be harmful if one does advance to stage 4.
Wishing you the best – Paul
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- February 3, 2016 at 7:17 pm
There is mounting evidence that a CLND does not offer significant benefits, as found in this German study:
There is a much larger study underway for the same thing but with a longer duration which will have long term survival statistics.
Also, given that immunotherapy antibodies combine with killer T-cells in your lymph nodes removing them may be harmful if one does advance to stage 4.
Wishing you the best – Paul
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