CLND do or don’t do??

Yes, I chose not to do it because I am too active.  I watched some webinars on melanomaforum.org too.  I am followed with ultrasound of the nodes every few months.  Works for me!

Yes, I chose not to do it because I am too active.  I watched some webinars on melanomaforum.org too.  I am followed with ultrasound of the nodes every few months.  Works for me!

Yes, I chose not to do it because I am too active.  I watched some webinars on melanomaforum.org too.  I am followed with ultrasound of the nodes every few months.  Works for me!

Hello Patti,

My husband decided not to do it.  His was not in the lymph nodes when they did the SNB.  It is no guarantee that it will help and he was also Stage 3C. 

Judy (loving wife of Gene Stage IV and now NED for over 3.5 years.

Hello Patti,

My husband decided not to do it.  His was not in the lymph nodes when they did the SNB.  It is no guarantee that it will help and he was also Stage 3C. 

Judy (loving wife of Gene Stage IV and now NED for over 3.5 years.

Hello Patti,

My husband decided not to do it.  His was not in the lymph nodes when they did the SNB.  It is no guarantee that it will help and he was also Stage 3C. 

Judy (loving wife of Gene Stage IV and now NED for over 3.5 years.

Hi Patti. I, like you, am stage 3C and refused the CLND at first. Then, 8 months later I had an in-transit melanoma pop up on my leg near the original melanoma at the exact same time that a lymph node became enlarged and hardened in my groin. I knew then that I needed the CLND. I had 8 out of 30 nodes come back positive, 2 labeled “grossly positive” on path report, none of which lit up on the PET scan. It is a very personal choice, and more and more literature is coming out to help guide your decision. It is a big procedure, so if you aren’t sure, then wait. But don’t avoid the surgery just because of the complications. Just like immunotherapy, you can’t predict the complications before they happen because everyone is different. I do have lymphedema, but it’s completely manageable and I don’t really think much of it these days. If anything is holding me back physically, it’s the side effects from immunotherapy rather than lymphedema. Definitely get a second opinion, gather as much info as you can, and do what’s best for YOU.

Wishing you all the best!!
Lauren

Hi Patti. I, like you, am stage 3C and refused the CLND at first. Then, 8 months later I had an in-transit melanoma pop up on my leg near the original melanoma at the exact same time that a lymph node became enlarged and hardened in my groin. I knew then that I needed the CLND. I had 8 out of 30 nodes come back positive, 2 labeled “grossly positive” on path report, none of which lit up on the PET scan. It is a very personal choice, and more and more literature is coming out to help guide your decision. It is a big procedure, so if you aren’t sure, then wait. But don’t avoid the surgery just because of the complications. Just like immunotherapy, you can’t predict the complications before they happen because everyone is different. I do have lymphedema, but it’s completely manageable and I don’t really think much of it these days. If anything is holding me back physically, it’s the side effects from immunotherapy rather than lymphedema. Definitely get a second opinion, gather as much info as you can, and do what’s best for YOU.

Wishing you all the best!!
Lauren

Hi Patti. I, like you, am stage 3C and refused the CLND at first. Then, 8 months later I had an in-transit melanoma pop up on my leg near the original melanoma at the exact same time that a lymph node became enlarged and hardened in my groin. I knew then that I needed the CLND. I had 8 out of 30 nodes come back positive, 2 labeled “grossly positive” on path report, none of which lit up on the PET scan. It is a very personal choice, and more and more literature is coming out to help guide your decision. It is a big procedure, so if you aren’t sure, then wait. But don’t avoid the surgery just because of the complications. Just like immunotherapy, you can’t predict the complications before they happen because everyone is different. I do have lymphedema, but it’s completely manageable and I don’t really think much of it these days. If anything is holding me back physically, it’s the side effects from immunotherapy rather than lymphedema. Definitely get a second opinion, gather as much info as you can, and do what’s best for YOU.

Wishing you all the best!!
Lauren

I am leaning towards not going through the procedure, but only if you get some kind of immunotherapy… 

My father had a positive sentinel node, all other nodes were negative (he did the surgery)… But his mel came back 3 years later, so don't really see the point in taking them out…

all best to you!

Patrisa

I am leaning towards not going through the procedure, but only if you get some kind of immunotherapy… 

My father had a positive sentinel node, all other nodes were negative (he did the surgery)… But his mel came back 3 years later, so don't really see the point in taking them out…

all best to you!

Patrisa

I am leaning towards not going through the procedure, but only if you get some kind of immunotherapy… 

My father had a positive sentinel node, all other nodes were negative (he did the surgery)… But his mel came back 3 years later, so don't really see the point in taking them out…

all best to you!

Patrisa

Btw, he had no side effects from the surgery, once he got rid of the drain, it was like nothing happened… But as i understand, its more likely to have 'problems' if it's done in the leg/groin area ( his was in the armpit)…

Patrisa

Btw, he had no side effects from the surgery, once he got rid of the drain, it was like nothing happened… But as i understand, its more likely to have 'problems' if it's done in the leg/groin area ( his was in the armpit)…

Patrisa

Btw, he had no side effects from the surgery, once he got rid of the drain, it was like nothing happened… But as i understand, its more likely to have 'problems' if it's done in the leg/groin area ( his was in the armpit)…

Patrisa

I also did not do the CLND. I was not even given the option, where I get treated they don't do many of those anymore. But, I would not have chosen it anyway. It comes down to a personal choice, whatever you are most comfortable with. If you plan on doing treatment, like Ipi or a trial, then in my opinion it doesn't seem totally worth the trouble and possible complications to do the CLND. 

 

I also did not do the CLND. I was not even given the option, where I get treated they don't do many of those anymore. But, I would not have chosen it anyway. It comes down to a personal choice, whatever you are most comfortable with. If you plan on doing treatment, like Ipi or a trial, then in my opinion it doesn't seem totally worth the trouble and possible complications to do the CLND. 

 

I also did not do the CLND. I was not even given the option, where I get treated they don't do many of those anymore. But, I would not have chosen it anyway. It comes down to a personal choice, whatever you are most comfortable with. If you plan on doing treatment, like Ipi or a trial, then in my opinion it doesn't seem totally worth the trouble and possible complications to do the CLND. 

 

Hi Chance16,

I had a CLND of the armpit after 3 nodes came back positive from the SNB at Moffitt. I have had almost no issues from the CLND and I am an avid cyclist and racer. Good luck… Moffitt is a great place.

Juan

Hi Chance16,

I had a CLND of the armpit after 3 nodes came back positive from the SNB at Moffitt. I have had almost no issues from the CLND and I am an avid cyclist and racer. Good luck… Moffitt is a great place.

Juan

Hi Chance16,

I had a CLND of the armpit after 3 nodes came back positive from the SNB at Moffitt. I have had almost no issues from the CLND and I am an avid cyclist and racer. Good luck… Moffitt is a great place.

Juan

Hi Patti,

As noted above by Patrisa, an axilla CLND appears to be less problematic than the groin dissection.  Mine were removed from axilla with nine coming back positive, but in hindsight, I doubt if it mattered because soon after a large sub-q popped up on my back, where neck meets shoulder and I was declared stage IV at that point anyway.  I have had  no complications at all and negligible lymphedema. It appears best current advice leans toward not doing the CLND as long as you immediately start on ipi as the preferred aggressive approach for Stage III.  

Gary

 

Hi Patti,

As noted above by Patrisa, an axilla CLND appears to be less problematic than the groin dissection.  Mine were removed from axilla with nine coming back positive, but in hindsight, I doubt if it mattered because soon after a large sub-q popped up on my back, where neck meets shoulder and I was declared stage IV at that point anyway.  I have had  no complications at all and negligible lymphedema. It appears best current advice leans toward not doing the CLND as long as you immediately start on ipi as the preferred aggressive approach for Stage III.  

Gary

 

Hi Patti,

As noted above by Patrisa, an axilla CLND appears to be less problematic than the groin dissection.  Mine were removed from axilla with nine coming back positive, but in hindsight, I doubt if it mattered because soon after a large sub-q popped up on my back, where neck meets shoulder and I was declared stage IV at that point anyway.  I have had  no complications at all and negligible lymphedema. It appears best current advice leans toward not doing the CLND as long as you immediately start on ipi as the preferred aggressive approach for Stage III.  

Gary

 

Hi!

I had the choice of a CLND (left groin) or ultra sound  4 1/2 years ago..  I opted for the surgery.  As others have said, it should be governed by what you feel is best based reviewing pertinent information and feedback from your medical team. .  Other than a bit of a post op infection (one week on IV antibiotics) and a little bit of  an extended time with the JP bulbs, I've had no complications.  I wore the compression stocking for abt 6 months and haven't worn them since.  I have had no swelling.  Occassionally my left ankle will get slightly swollen.  During those rare times, it's back to normal the next morning.  Physically, I can still run, play racvquetball, hike, walk – all with no issues.  

 

I have not had any recurrences, and slso had no other positive nodes after my SLNB.  Who knows what part the surgery played, but so far so good.

Again, as others have mentioned, the view of the efficacy of the CLND is evolving.  Good luck with your decision!

 

Stan

Hi!

I had the choice of a CLND (left groin) or ultra sound  4 1/2 years ago..  I opted for the surgery.  As others have said, it should be governed by what you feel is best based reviewing pertinent information and feedback from your medical team. .  Other than a bit of a post op infection (one week on IV antibiotics) and a little bit of  an extended time with the JP bulbs, I've had no complications.  I wore the compression stocking for abt 6 months and haven't worn them since.  I have had no swelling.  Occassionally my left ankle will get slightly swollen.  During those rare times, it's back to normal the next morning.  Physically, I can still run, play racvquetball, hike, walk – all with no issues.  

 

I have not had any recurrences, and slso had no other positive nodes after my SLNB.  Who knows what part the surgery played, but so far so good.

Again, as others have mentioned, the view of the efficacy of the CLND is evolving.  Good luck with your decision!

 

Stan

Hi!

I had the choice of a CLND (left groin) or ultra sound  4 1/2 years ago..  I opted for the surgery.  As others have said, it should be governed by what you feel is best based reviewing pertinent information and feedback from your medical team. .  Other than a bit of a post op infection (one week on IV antibiotics) and a little bit of  an extended time with the JP bulbs, I've had no complications.  I wore the compression stocking for abt 6 months and haven't worn them since.  I have had no swelling.  Occassionally my left ankle will get slightly swollen.  During those rare times, it's back to normal the next morning.  Physically, I can still run, play racvquetball, hike, walk – all with no issues.  

 

I have not had any recurrences, and slso had no other positive nodes after my SLNB.  Who knows what part the surgery played, but so far so good.

Again, as others have mentioned, the view of the efficacy of the CLND is evolving.  Good luck with your decision!

 

Stan

Here's some of the very latest data that helps point the direction of possibly who should and who shouldn't….you be the judge:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html

I wish you well.  Celeste

Here's some of the very latest data that helps point the direction of possibly who should and who shouldn't….you be the judge:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html

I wish you well.  Celeste

Here's some of the very latest data that helps point the direction of possibly who should and who shouldn't….you be the judge:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html

I wish you well.  Celeste

Another thought….

It is always said, that the best option (if possible) to treat melanoma is surgery, so maaaybe getting the potentialy infected lymph nodes out and then doing imunotherapy is a way to go…

I'm not sure though… Just a thought…

love,

Patrisa

Another thought….

It is always said, that the best option (if possible) to treat melanoma is surgery, so maaaybe getting the potentialy infected lymph nodes out and then doing imunotherapy is a way to go…

I'm not sure though… Just a thought…

love,

Patrisa

Another thought….

It is always said, that the best option (if possible) to treat melanoma is surgery, so maaaybe getting the potentialy infected lymph nodes out and then doing imunotherapy is a way to go…

I'm not sure though… Just a thought…

love,

Patrisa

I did not do it for other reasons – I am phobic of hospitals and doctors. I was definitely stage 3C. We could telll from the scans There were two sizeable tumours in my right armpit. My wonderful melanoma specialist had me classified as 'non-resectable' and I went straight for Ipi. Then, luckily, I was a responder.

I did look at all the data before they decided that I was never going to agree to the surgery. My logical side was not convinced. I think it is interesting that some melanoma treatment teams are moving towards monitoring lymph nodes using ultrasound.

I did not do it for other reasons – I am phobic of hospitals and doctors. I was definitely stage 3C. We could telll from the scans There were two sizeable tumours in my right armpit. My wonderful melanoma specialist had me classified as 'non-resectable' and I went straight for Ipi. Then, luckily, I was a responder.

I did look at all the data before they decided that I was never going to agree to the surgery. My logical side was not convinced. I think it is interesting that some melanoma treatment teams are moving towards monitoring lymph nodes using ultrasound.

I did not do it for other reasons – I am phobic of hospitals and doctors. I was definitely stage 3C. We could telll from the scans There were two sizeable tumours in my right armpit. My wonderful melanoma specialist had me classified as 'non-resectable' and I went straight for Ipi. Then, luckily, I was a responder.

I did look at all the data before they decided that I was never going to agree to the surgery. My logical side was not convinced. I think it is interesting that some melanoma treatment teams are moving towards monitoring lymph nodes using ultrasound.

You need to be OK with the treatment path you are on. If this means getting other opinions, it may be best to pause and do just that.

No one can tell you what decisions to make, whether that person is on here or a doctor. They are your decisions.

From your original post, you do not want to do the CLND. This is not an unreasonable decision. If you present the prospect of this decision to the medical team, what do they say?

My phobia means that I had a lot of experience of doctors when faced with a patient saying no. Some cope brilliantly. Others just stare at you as if they haven't got a clue what to do.

It was such a relief when I met my melanoma specialist, who treated me rather than my melanoma or my phobia.

You need to be OK with the treatment path you are on. If this means getting other opinions, it may be best to pause and do just that.

No one can tell you what decisions to make, whether that person is on here or a doctor. They are your decisions.

From your original post, you do not want to do the CLND. This is not an unreasonable decision. If you present the prospect of this decision to the medical team, what do they say?

My phobia means that I had a lot of experience of doctors when faced with a patient saying no. Some cope brilliantly. Others just stare at you as if they haven't got a clue what to do.

It was such a relief when I met my melanoma specialist, who treated me rather than my melanoma or my phobia.

You need to be OK with the treatment path you are on. If this means getting other opinions, it may be best to pause and do just that.

No one can tell you what decisions to make, whether that person is on here or a doctor. They are your decisions.

From your original post, you do not want to do the CLND. This is not an unreasonable decision. If you present the prospect of this decision to the medical team, what do they say?

My phobia means that I had a lot of experience of doctors when faced with a patient saying no. Some cope brilliantly. Others just stare at you as if they haven't got a clue what to do.

It was such a relief when I met my melanoma specialist, who treated me rather than my melanoma or my phobia.

Hello all,

So I just wanted to ask the question….Is there a need to have a CLND? I guess conventional wisdom says yes, but I very curious. I came across some results from a phase III study presented last year in May at the 2015 American Society of Clinical Oncology (ASCO) meeting in Chicago entitled "No need for Lymph Node Dissection in Certain Melanoma Patients".

Basically saying that a CLND for people with MICROmetastatic cutaneous melanoma following a positive SLNB "may" not be necessary. So after my SLNB, my pathology report states that I am MICRO and not MACRO!

In the paper it states that "a potential improvement in survival is only one reason that a patient could be recommended to undergo a CLND. The main reason is the chance of a local lymph node recurrence that would later require more difficult surgery". So I see the pros and cons.

Now my Oncologist at The University of KU told me that I would have a CLND if the pet scan and mri results come back negative. I have also reached out to MD Anderson about this and am awaiting their response to my question. I meet with my Oncologist from KU on Thursday so I will definitely ask this question to discuss.

I am curious to know everyone's thoughts on this and especially the thoughts from anyone that actually had the procedure and what the recovery was like, life thereafter, etc.

Just a reminder…my tumor stage from the AJCC based upon one positive lymph node from my SLNB says that I am T3aN1a, no ulceration, micrometastasis, 3mm, involves 7% of nodal cross sectional area and is negative for extracapsular extension.

Thanks in advance for your responses…..Stacy

 

Hello all,

So I just wanted to ask the question….Is there a need to have a CLND? I guess conventional wisdom says yes, but I very curious. I came across some results from a phase III study presented last year in May at the 2015 American Society of Clinical Oncology (ASCO) meeting in Chicago entitled "No need for Lymph Node Dissection in Certain Melanoma Patients".

Basically saying that a CLND for people with MICROmetastatic cutaneous melanoma following a positive SLNB "may" not be necessary. So after my SLNB, my pathology report states that I am MICRO and not MACRO!

In the paper it states that "a potential improvement in survival is only one reason that a patient could be recommended to undergo a CLND. The main reason is the chance of a local lymph node recurrence that would later require more difficult surgery". So I see the pros and cons.

Now my Oncologist at The University of KU told me that I would have a CLND if the pet scan and mri results come back negative. I have also reached out to MD Anderson about this and am awaiting their response to my question. I meet with my Oncologist from KU on Thursday so I will definitely ask this question to discuss.

I am curious to know everyone's thoughts on this and especially the thoughts from anyone that actually had the procedure and what the recovery was like, life thereafter, etc.

Just a reminder…my tumor stage from the AJCC based upon one positive lymph node from my SLNB says that I am T3aN1a, no ulceration, micrometastasis, 3mm, involves 7% of nodal cross sectional area and is negative for extracapsular extension.

Thanks in advance for your responses…..Stacy

 

Hello all,

So I just wanted to ask the question….Is there a need to have a CLND? I guess conventional wisdom says yes, but I very curious. I came across some results from a phase III study presented last year in May at the 2015 American Society of Clinical Oncology (ASCO) meeting in Chicago entitled "No need for Lymph Node Dissection in Certain Melanoma Patients".

Basically saying that a CLND for people with MICROmetastatic cutaneous melanoma following a positive SLNB "may" not be necessary. So after my SLNB, my pathology report states that I am MICRO and not MACRO!

In the paper it states that "a potential improvement in survival is only one reason that a patient could be recommended to undergo a CLND. The main reason is the chance of a local lymph node recurrence that would later require more difficult surgery". So I see the pros and cons.

Now my Oncologist at The University of KU told me that I would have a CLND if the pet scan and mri results come back negative. I have also reached out to MD Anderson about this and am awaiting their response to my question. I meet with my Oncologist from KU on Thursday so I will definitely ask this question to discuss.

I am curious to know everyone's thoughts on this and especially the thoughts from anyone that actually had the procedure and what the recovery was like, life thereafter, etc.

Just a reminder…my tumor stage from the AJCC based upon one positive lymph node from my SLNB says that I am T3aN1a, no ulceration, micrometastasis, 3mm, involves 7% of nodal cross sectional area and is negative for extracapsular extension.

Thanks in advance for your responses…..Stacy