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Is CLND really worth it?

Forums General Melanoma Community Is CLND really worth it?

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      I have been recently diagnosed with stage 3a melanoma. I had a WLE and SLNB done 3 weeks ago. I had two lymph nodes removed and one came back positive with a very small amount of cancer in it. My oncologist and surgical oncologist both recommend that I have CLND. I don’t know what to do? I don’t like the idea of cancer possibly being in other lymph nodes but the possible complications of a CLND scare me. I do not want to get lymphedema, and was told I had a 30-40% chance of developing it after surgery. I don’t know what to do? I definitely do not want to try Ipi because of the side effects. But, I am not 100% sure that I want to do the CLND. Does anyone have any advice?
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          Not an easy decision to make. If your SLNB was in your groin, then the liklihood of lymphedema from CLND in groin is much worse than if in neck or armpit, something to keep in mind. Many have lived with lymphedema just fine and don't regret doing CLND. Some have opted out of CLND and went to systemic treatment like Ipi. Not everyone gets bad side effects from Ipi, a lot of people have only gotten fatigue and minor easy to deal with side effects. And a lot have gotten permanent side effects, but most are easily dealt with by medication.. the sooner a side effect is reported, the faster it can get dealt with. If you don't do the CLND, it would be recommended to do systemic treatment, and Ipi would be the only good approved option. You could try a trial in the hopes of getting keytruda or opdivo, but most trials require CLND, so that makes getting on a trial difficult. At 3a and having only a small bit of cells in 1 lymph node from SLNB means the rest of the lymph nodes are likely clear. You could pass up the CLND and go straight to observation only. Meaning full body scans every 3 months and regular visits with your oncologist. If anything were to come back, it would be caught early and you'd deal with it at that time. You also have a chance of it never coming back. It all comes down to what your gut is telling you to do. We've all made these decisions, some may agree more with one way than another, but what we do with our bodies is entirely our decision to make. Wishing you the best in whatever you decide.

            Bubbles (Celeste) is a member here and has a blog with a gazillion research articles on melanoma and I’m sure plenty of info about CLND.I had one. It wasn’t too bad . I had a drain for 5 weeks and have minimal lymphedema. One leg is about 1 inch bigger in circumference than the other and when I travel my foot and ankle swell some – temporarily . My personal opinion is this is an aggressive melanoma that deserves aggressive treatment, but do your research and make the best decision for YOU. Please confer with melanoma oncologist and surgeon if at all possible ! Good luck.

                My son is trying to decide whether to do the CLND (and clinicial trial).  As his doctor tells him that the CLND in his case is controvesial, he's inclined to watch and wait.  The specifics are 2 out of 2 nodes in the SLNB were positive, but with less than 10 cells each.  No ulceration of the original tumor and spitzoid features.  Since his CT scan showed tiny nodules on the lung, he decided to repeat the scan in 6 weeks before making any decision.  Since then, he seems more and more inclined to simply watch and wait.


                  My theory on this topic is why leave cancer in your body? It's a no brainer to me to surgically remove any cancer that you are able to before it turns into something you're not able to? I had this done in 2013 in my groin. I was 31 years old at the time with 4 children and if I had to do it all over again, I would in a heartbeat. I was in the same boat as well, terrified of both the clnd and then Ipi. I was crushed when I found out my slnb was positive but my surgeon never gave me the option of not doing it. I was told this was an aggressive, doesn't play by the rules type of cancer and this is what needs to be done. My surgeon was also a professor and had been doing this for 30+ years. So I geared up for the surgery and it wasnt fun let me tell you. I also got an infection which required more hospital stay. I also ended up with lymphadema. I have changed my life a little bit because of it but not much. I sleep with something on and because I am not able to wear a stocking during the day I have a pump I use. So yeah, a little inconvient but so is cancer and I have not recurred since.


                    I was in a similar situation.  The melanoma clinic I was at offered CLND as it was the "standard of care". I also was one positive node with a few cells.  My dermatolgist recommended against it and cited the DECOG study which showed no advantage of the CLND.  It was a difficult decision.  My issue with DECOG was the study is scientifically underpowered and only shows a 3 year survival rate.  There is another study on going, but the results will not be in for a few more years.  I had to make a decision with what I know now.  Ultimately, I decided to do an auxillary lymph node disection.  The data just wasn't there in the long term to forego the surgery.  I was concerned that I could have left a microscopic amount of cells in the lymph node basin that years from now would grow and cause more problems.  All my nodes came back clear, but you should know that's for obvious signs of cancer.  They do no disect the nodes as finely as the sentinel nodes. You may have removed microscopic cells.  No one will know.  I have minor side effects with small amount of occasional nerve pain, totally bearable.  I have full mobility and live a normal life.  I am coming up on 1 year NED.  Make the decision you feel most confortable with and never look back.  The only right decision is the one you can be at peace with.  Good luck.


                    Like much in melanoma, advice on whether or not to do the CLND is ….conflicted.  There is data to support it and and data that indicates that it has no benefit in OS (overall survival).  I have had it done twice….to both axillae (the right in 2003, the left in 2007).  I did not develop lymphedema but did progress to Stage IV in 2010.  Folks that are older and heavier as well as those who have a CLND of the leg are MORE at risk for developing lymphedema….but it is a risk that is present for all.  Michelle was correct, there is data on pretty much all things melanoma on my blog.  Use the search bubble to find what you need.  Here is a link to three pertinent reports:  

                    Hope that helps.  My very best advice is to make sure you are being seen by a melanoma specialist.  It makes a world of difference.  I wish you well.  Celeste


                        I am sorry to hear that you are in in this situation, he sound eerily similar to mine and I to, was concerned about the surgery. I am not 7 weeks out from a full groin dissection and am so happy that I did it. The recovery was not easy, but it was not half as hard as I had anticipated. I did have my drain for 6 weeks but it was not as cumbersome as I thought and I just became used to it. I have zero swelling in my lower leg and ankle, and my right thigh is now only slightly larger then my left. I have gone for lymphatic drain massage 3 times to just "jump start" my system so to speak and I do wear my compression garment everyday. When I am sitting, I keep my feet elevated ( iIpurchased an amazing leg pillow from amazon) and doing these things have really helped. I had grave concerns as I am a flight attendant and my doctor has told me that as long as I follow what I am doing, ( garmet, elevating etc). I should be OK. I totally understand your concern, I just left it was best for me (one positive sentinel node was all I had), but again it is a personal decison and I wanted to ensure I did all I could. Please do not hesitate to contact me should you have any other questions, best of luck!!!

                          I agree a specialist is key to decision making. CLND so far has not been shown to be life saving. It may not even prevent spread to other organs. My advice is to go for some of the prognostic tests looking at individual genetic risks. Would be all different if CLND makes you tumor free. Melanoma unfortunately often uses blood stream for progression.

                          Not everyone agrees with my opinion on this, but if I had the choice over again, knowing what I know now, I would choose to not have a CLND.  I had mine done on my right axilla back in 2015.  The lymphadema has been manageable, but it has led to two episodes of cellulitis that put me in the hospital for a few days each time.  I have been doing PT to try and get range of motion back on my right arm for a lot longer than my surgeon said it would take.  I would say that I have about 70% of what I had before my CLND.  I wear a compression sleeve all the time and I use a lymphadema pump every night.  I have had cellulitis two more times in the past two months, but my wife and I caught it and started oral antibiotics in time to get ahead of it and avoid the long hospital stay.

                          None of this would be a problem for me if my cancer wouldn't have come back anyway.  Within a year or so, I had a small tumor removed from the fat around my right kidney.  That graduated me to stage 4.  In December of last year a scan showed a 5cm tumor on my spine, 6 spots in my right lung, and a few other spots that indicate cancer.  The spine tumor was the big concern so we radiated it and started immune therapy right after that scan.  This is way easier than the CLND in my opinion.  Especially when the CLND didn't stop the cancer from coming back.  Either way it sucks, but in my experience a CLND seems to have been a waste and has done more damage than good for me. 

                          Good luck with whatever you decide.


                            ed williams

                              I would have to agree with you Brad, with the advantage of hind sight and progression it feels like a mistake!!! At the time, I just wanted to cut out any chance that Melanoma was still there. When the result of MSLT 2 are in, we will know for sure. Here is a little bit about the science that we are waiting for. Best Wishes to Anon while you are going through the process!!!Ed

                              ed williams

                                Just a little bit more for those that are interested in CLND and SND from 2014 on Onclive with a great panel of experts. It is a little bit funny listening to experts from just 3 years ago talk about what to do for patients. The good news is we are getting close to having the data in from MSLT-2.


                                I opt out of CLND in the groin.  I have had 3 lymph nodes removed and have mild lymphdema.  Also, the cancer has spread but not to any of the lymph nodes that would of been removed.  I mean, really all the way in my left collar bone area.  It is a tough decisions and my doc really pushed. 

                                No looking back!!

                                Best of luck.

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