› Forums › General Melanoma Community › Should I have a CLND or do the watch and wait method.
- This topic has 39 replies, 7 voices, and was last updated 7 years, 8 months ago by
Jon M.
- Post
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- August 19, 2016 at 10:19 pm
Hi my name Jon i was diagnosed on June 24 with stage IIb melanoma on my right leg. I had my wide excesion and a split thickness skin graft along with a SLNB done on August 4. I just recevied my pathology report yesterday and my margins are clear in my leg but the SLNB came back with cancer in it. So now i think this makes me stage III. I go back to the surgeon on Monday to talk about my options. From what i have read i dont know if i want to go through with a CLND. Some studies now say that it doesn't improve overal survival rate so my thoughts are why put myself through it. I am going to discuss treatment options with my surgeon and i have an appointment with an oncologist. I would like to know who has not done a CLND and what treatment they went with?
- Replies
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- August 19, 2016 at 10:36 pm
I decided NOT to do the CLND. My oncologist wanted me too, but he did give me another option and that was to start on Yervoy an iimmunotherapy treatment. I just had treatment on Wednesday. I don't any side effects at this time. I posted the same thing a few weeks ago. I got advice and made my decision. I was still on the fence the night before. I just think it is right for me. No looking back. (advice from another poster)
Sorry you had to find us here. But this is another journey in our lives.
Donna
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- August 19, 2016 at 10:36 pm
I decided NOT to do the CLND. My oncologist wanted me too, but he did give me another option and that was to start on Yervoy an iimmunotherapy treatment. I just had treatment on Wednesday. I don't any side effects at this time. I posted the same thing a few weeks ago. I got advice and made my decision. I was still on the fence the night before. I just think it is right for me. No looking back. (advice from another poster)
Sorry you had to find us here. But this is another journey in our lives.
Donna
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- August 19, 2016 at 10:36 pm
I decided NOT to do the CLND. My oncologist wanted me too, but he did give me another option and that was to start on Yervoy an iimmunotherapy treatment. I just had treatment on Wednesday. I don't any side effects at this time. I posted the same thing a few weeks ago. I got advice and made my decision. I was still on the fence the night before. I just think it is right for me. No looking back. (advice from another poster)
Sorry you had to find us here. But this is another journey in our lives.
Donna
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- August 19, 2016 at 11:37 pm
I also did not do a CLND and started on Yervoy (ipi) 10mg/kg. Finished the 4 main doses and currently doing maitenance doses. You can check out my profile for a full time line and some of the side effects I have encountered. It is really a personal decision in what you're comfortable with, so it's good to take time to weigh the pros and cons.
All the best,
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- August 19, 2016 at 11:37 pm
I also did not do a CLND and started on Yervoy (ipi) 10mg/kg. Finished the 4 main doses and currently doing maitenance doses. You can check out my profile for a full time line and some of the side effects I have encountered. It is really a personal decision in what you're comfortable with, so it's good to take time to weigh the pros and cons.
All the best,
-
- August 19, 2016 at 11:37 pm
I also did not do a CLND and started on Yervoy (ipi) 10mg/kg. Finished the 4 main doses and currently doing maitenance doses. You can check out my profile for a full time line and some of the side effects I have encountered. It is really a personal decision in what you're comfortable with, so it's good to take time to weigh the pros and cons.
All the best,
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- August 20, 2016 at 3:09 am
Hi JOn,
i think Wagner is a surgeon. Do you also have a melanoma specialist? If not, I highly suggest making one part of your team. As to your question, I did elect to have the CLND five years ago. I was given the choice as well. At the time. The only real choices. Available were CLND, interferon or watch and wait. I chose what I though to be the most aggressive option. As for side effects, I was very lucky. No lymphadema and (so far) no recurrence. I did have a fairly good post-op inaction which bought me a ticket back to the,hospital for a week, but that was on to deal with.
o e of the reasons I suggest the mela proms specialist is to review with an expert the different treatments now available and what his opinion is given your age, state and overall health. At the end of the day, there's no right or wrong. Do,your homework and make the choice you deem to be best.
good luck!
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- August 20, 2016 at 3:09 am
Hi JOn,
i think Wagner is a surgeon. Do you also have a melanoma specialist? If not, I highly suggest making one part of your team. As to your question, I did elect to have the CLND five years ago. I was given the choice as well. At the time. The only real choices. Available were CLND, interferon or watch and wait. I chose what I though to be the most aggressive option. As for side effects, I was very lucky. No lymphadema and (so far) no recurrence. I did have a fairly good post-op inaction which bought me a ticket back to the,hospital for a week, but that was on to deal with.
o e of the reasons I suggest the mela proms specialist is to review with an expert the different treatments now available and what his opinion is given your age, state and overall health. At the end of the day, there's no right or wrong. Do,your homework and make the choice you deem to be best.
good luck!
-
- August 20, 2016 at 3:09 am
Hi JOn,
i think Wagner is a surgeon. Do you also have a melanoma specialist? If not, I highly suggest making one part of your team. As to your question, I did elect to have the CLND five years ago. I was given the choice as well. At the time. The only real choices. Available were CLND, interferon or watch and wait. I chose what I though to be the most aggressive option. As for side effects, I was very lucky. No lymphadema and (so far) no recurrence. I did have a fairly good post-op inaction which bought me a ticket back to the,hospital for a week, but that was on to deal with.
o e of the reasons I suggest the mela proms specialist is to review with an expert the different treatments now available and what his opinion is given your age, state and overall health. At the end of the day, there's no right or wrong. Do,your homework and make the choice you deem to be best.
good luck!
-
- August 20, 2016 at 9:46 pm
Hi Jon,
This is not an easy choice. Can I ask if the melanoma in SLNB in the groin was microscopic only or of some size ?
There is some debate regarding how helpful a full dissection is- pending the outcome of the MSLT II trial.
Reading this might be useful- http://www.cancernetwork.com/asco-2015-melanoma/no-need-lymph-node-dissection-certain-melanoma-patients
From what I understand intervention is likely to be helpful -the higher the probability of spread to neighbouring nodes .Where the the SLNB reveals a sizable positive node then the spread to surrounding nodes in the groin or pelvis is increasingly likely. A CLND gives a more accurate staging- removes sources of spread-and may be a requirementin order to be considered for drug trials for Stage III melanoma with various new treatments PD 1 etc
My surgeon recommended a pelvic and inguinal procedure as my lymph node was roughly 2.5 cm and was positive for melanoma.on ultrasound fine needle aspiration, although the PET scan only showed 1 positive node in the inguinal region. Subsequently it was confirmed that 1 positive node hidden from the scan in the deeper pelvis had been removed when I got the path results. This article discusses the need to consider the greater procedure where the initial node is clinically detectable due to size. http://www.ncbi.nlm.nih.gov/pubmed/23391539
I think you are right to talk through the options- and try to work out the pros and cons. I have read somewhere that many patients are not offered the likely optimal procedure to delay or prevent progression- and this may skew the results to favour the no benefit from surgery consensus. I went for a second opinion surgical option which was more agressive than that suggested by the first surgeon and MDT but in spite of lymphadema complications , given the pathology results am very happy the positive pelvic node was removed at the same time as the inguinal node- and even though the other nodes removed were in theory clear on testing- they can only test a sample of these nodes and it is a possibility that a small number of melanoma cells had already migrated to neighbouring nodes- but were not detectable on the path sample.
In the end we all take the best advice we can find and have to accept the outcomes of our choices. Good for you to be asking the questions.and taking some control back in your response to this disease. Whilst in the future it may be that we are spared CLND and go direct to immunotherapy or other treatment where testing can determine the liklihood of a complete response- we are not at this stage yet…
Best of luck in your future treatmentand if you do go for the clearance I hope you have an expert melanoma specialist plastic surgeon- as the results from the specialist centres where the expertise is concentrated seem to bethe best we can hope for.
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- August 20, 2016 at 9:46 pm
Hi Jon,
This is not an easy choice. Can I ask if the melanoma in SLNB in the groin was microscopic only or of some size ?
There is some debate regarding how helpful a full dissection is- pending the outcome of the MSLT II trial.
Reading this might be useful- http://www.cancernetwork.com/asco-2015-melanoma/no-need-lymph-node-dissection-certain-melanoma-patients
From what I understand intervention is likely to be helpful -the higher the probability of spread to neighbouring nodes .Where the the SLNB reveals a sizable positive node then the spread to surrounding nodes in the groin or pelvis is increasingly likely. A CLND gives a more accurate staging- removes sources of spread-and may be a requirementin order to be considered for drug trials for Stage III melanoma with various new treatments PD 1 etc
My surgeon recommended a pelvic and inguinal procedure as my lymph node was roughly 2.5 cm and was positive for melanoma.on ultrasound fine needle aspiration, although the PET scan only showed 1 positive node in the inguinal region. Subsequently it was confirmed that 1 positive node hidden from the scan in the deeper pelvis had been removed when I got the path results. This article discusses the need to consider the greater procedure where the initial node is clinically detectable due to size. http://www.ncbi.nlm.nih.gov/pubmed/23391539
I think you are right to talk through the options- and try to work out the pros and cons. I have read somewhere that many patients are not offered the likely optimal procedure to delay or prevent progression- and this may skew the results to favour the no benefit from surgery consensus. I went for a second opinion surgical option which was more agressive than that suggested by the first surgeon and MDT but in spite of lymphadema complications , given the pathology results am very happy the positive pelvic node was removed at the same time as the inguinal node- and even though the other nodes removed were in theory clear on testing- they can only test a sample of these nodes and it is a possibility that a small number of melanoma cells had already migrated to neighbouring nodes- but were not detectable on the path sample.
In the end we all take the best advice we can find and have to accept the outcomes of our choices. Good for you to be asking the questions.and taking some control back in your response to this disease. Whilst in the future it may be that we are spared CLND and go direct to immunotherapy or other treatment where testing can determine the liklihood of a complete response- we are not at this stage yet…
Best of luck in your future treatmentand if you do go for the clearance I hope you have an expert melanoma specialist plastic surgeon- as the results from the specialist centres where the expertise is concentrated seem to bethe best we can hope for.
-
- August 20, 2016 at 9:46 pm
Hi Jon,
This is not an easy choice. Can I ask if the melanoma in SLNB in the groin was microscopic only or of some size ?
There is some debate regarding how helpful a full dissection is- pending the outcome of the MSLT II trial.
Reading this might be useful- http://www.cancernetwork.com/asco-2015-melanoma/no-need-lymph-node-dissection-certain-melanoma-patients
From what I understand intervention is likely to be helpful -the higher the probability of spread to neighbouring nodes .Where the the SLNB reveals a sizable positive node then the spread to surrounding nodes in the groin or pelvis is increasingly likely. A CLND gives a more accurate staging- removes sources of spread-and may be a requirementin order to be considered for drug trials for Stage III melanoma with various new treatments PD 1 etc
My surgeon recommended a pelvic and inguinal procedure as my lymph node was roughly 2.5 cm and was positive for melanoma.on ultrasound fine needle aspiration, although the PET scan only showed 1 positive node in the inguinal region. Subsequently it was confirmed that 1 positive node hidden from the scan in the deeper pelvis had been removed when I got the path results. This article discusses the need to consider the greater procedure where the initial node is clinically detectable due to size. http://www.ncbi.nlm.nih.gov/pubmed/23391539
I think you are right to talk through the options- and try to work out the pros and cons. I have read somewhere that many patients are not offered the likely optimal procedure to delay or prevent progression- and this may skew the results to favour the no benefit from surgery consensus. I went for a second opinion surgical option which was more agressive than that suggested by the first surgeon and MDT but in spite of lymphadema complications , given the pathology results am very happy the positive pelvic node was removed at the same time as the inguinal node- and even though the other nodes removed were in theory clear on testing- they can only test a sample of these nodes and it is a possibility that a small number of melanoma cells had already migrated to neighbouring nodes- but were not detectable on the path sample.
In the end we all take the best advice we can find and have to accept the outcomes of our choices. Good for you to be asking the questions.and taking some control back in your response to this disease. Whilst in the future it may be that we are spared CLND and go direct to immunotherapy or other treatment where testing can determine the liklihood of a complete response- we are not at this stage yet…
Best of luck in your future treatmentand if you do go for the clearance I hope you have an expert melanoma specialist plastic surgeon- as the results from the specialist centres where the expertise is concentrated seem to bethe best we can hope for.
-
- August 21, 2016 at 12:48 am
I would like to thank everyone from the bottom of my heart for all of there info. I go on Monday to meet back with my surgeon Dr. Wagner who did the WLE, skin graft and SLNB. He is a surgical oncologist and a board certified plastic surgeon. He was one of the founding members of IU medical melanoma reseach. I do have an appointment with a regular oncologiest in my home town since Wagner is a surgical oncologist and he is about an hour and half away. I dont know if my lymph node results where micro or macro ill find that out monday i didnt know anything about that stuff untill yesterday. i been reading up on everething i can so i know what to ask. I know my oncologist in my home town is very good with other types of cancer but dont know about melanoma something i am going to find out. I just got my pathology report this thursday afternoon and took a little while to sink in. Its good to know im not the only one out there going/been through this right now. I am very thankful to have the best girlfriend in the world. She has been by my side through all of this. I am thankful that i have a very good support system, but it makes it diffucult to discuss somethings with them. Thats why im glad i have this community here to help me out.
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- August 21, 2016 at 12:48 am
I would like to thank everyone from the bottom of my heart for all of there info. I go on Monday to meet back with my surgeon Dr. Wagner who did the WLE, skin graft and SLNB. He is a surgical oncologist and a board certified plastic surgeon. He was one of the founding members of IU medical melanoma reseach. I do have an appointment with a regular oncologiest in my home town since Wagner is a surgical oncologist and he is about an hour and half away. I dont know if my lymph node results where micro or macro ill find that out monday i didnt know anything about that stuff untill yesterday. i been reading up on everething i can so i know what to ask. I know my oncologist in my home town is very good with other types of cancer but dont know about melanoma something i am going to find out. I just got my pathology report this thursday afternoon and took a little while to sink in. Its good to know im not the only one out there going/been through this right now. I am very thankful to have the best girlfriend in the world. She has been by my side through all of this. I am thankful that i have a very good support system, but it makes it diffucult to discuss somethings with them. Thats why im glad i have this community here to help me out.
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- August 21, 2016 at 12:48 am
I would like to thank everyone from the bottom of my heart for all of there info. I go on Monday to meet back with my surgeon Dr. Wagner who did the WLE, skin graft and SLNB. He is a surgical oncologist and a board certified plastic surgeon. He was one of the founding members of IU medical melanoma reseach. I do have an appointment with a regular oncologiest in my home town since Wagner is a surgical oncologist and he is about an hour and half away. I dont know if my lymph node results where micro or macro ill find that out monday i didnt know anything about that stuff untill yesterday. i been reading up on everething i can so i know what to ask. I know my oncologist in my home town is very good with other types of cancer but dont know about melanoma something i am going to find out. I just got my pathology report this thursday afternoon and took a little while to sink in. Its good to know im not the only one out there going/been through this right now. I am very thankful to have the best girlfriend in the world. She has been by my side through all of this. I am thankful that i have a very good support system, but it makes it diffucult to discuss somethings with them. Thats why im glad i have this community here to help me out.
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- August 21, 2016 at 3:01 am
You definitely need a melanoma oncologist. That is an oncologist who ONLY works with melanoma patients and does not treat any other form of cancer. Even a general oncologist who say they have a "special interest" in melanoma will not do, they just are not up to date and as knowledgeable about this crazy disease as someone who constantly researches and treats melanoma patients. Sometimes that means a longer drive than we'd typically like to see a doctor, but very well worth it.
Take care,
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- August 21, 2016 at 3:01 am
You definitely need a melanoma oncologist. That is an oncologist who ONLY works with melanoma patients and does not treat any other form of cancer. Even a general oncologist who say they have a "special interest" in melanoma will not do, they just are not up to date and as knowledgeable about this crazy disease as someone who constantly researches and treats melanoma patients. Sometimes that means a longer drive than we'd typically like to see a doctor, but very well worth it.
Take care,
-
- August 21, 2016 at 3:01 am
You definitely need a melanoma oncologist. That is an oncologist who ONLY works with melanoma patients and does not treat any other form of cancer. Even a general oncologist who say they have a "special interest" in melanoma will not do, they just are not up to date and as knowledgeable about this crazy disease as someone who constantly researches and treats melanoma patients. Sometimes that means a longer drive than we'd typically like to see a doctor, but very well worth it.
Take care,
-
- August 21, 2016 at 10:58 am
Hi Jon,
Hada sleepless night- but the silver lining was I found some great quality explanations of where we are at stage III decision making on Catherine Poole's Melanoma International Foundation 's webinars posted on youtube but also available from their website.
Best of luck for Monday
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- August 21, 2016 at 10:58 am
Hi Jon,
Hada sleepless night- but the silver lining was I found some great quality explanations of where we are at stage III decision making on Catherine Poole's Melanoma International Foundation 's webinars posted on youtube but also available from their website.
Best of luck for Monday
-
- August 21, 2016 at 10:58 am
Hi Jon,
Hada sleepless night- but the silver lining was I found some great quality explanations of where we are at stage III decision making on Catherine Poole's Melanoma International Foundation 's webinars posted on youtube but also available from their website.
Best of luck for Monday
-
- August 22, 2016 at 10:15 pm
Jon,
Sorry to hear about your diagnosis. But this support group/message board is an awesome place to have found.
I am stage 3a. Right knee was my primary location. I had my WLE and one lymph node removed from my right groin during my SLNB which came back positive. So I had this same decision to make. Both my surgical oncologist and MD Anderson recommended a CLND of my right groin (standard of care). I also reached out to Sloan Kettering and they had a little bit of a different opinion basically saying that while the CLND is the standard of care, not having the surgery, going on Yervoy and having scans every 3 months is an acceptable approach.
I decided to forego the surgery. I met with my medical oncologist last week and while he did recommend me having the surgery, he is very ccomfortable in the other approach. I was very prepared for our meeting with questions and information, etc. So I will have my first Yervoy 10mg infusion on Thursday.
It's the best decision FOR ME and I'm at peace with it! I had a lot of time to think about what my decision would be until I had to make one so I feel comfortable and again, at peace with MY decision. I hope that you also get to that point as well Jon! It's easy to tell or recommend to someone else what they should do, but try and do and get to a place in your heart that you know is the best decision FOR YOU!
Good luck with everything and please stay connected to this board…it's been great and very helpful for me!!
Stacy
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- August 22, 2016 at 10:30 pm
Thank you for the advice. I just got back from my meeting with my surgical oncologist. He orderd some scans to be done an gave me the (standard of care) speech as well. My surgery hasnt been schduled yet so i have some time to look into this futrther. He said my SLB reviled that i had a very small microscopic traces show up, i to only had one lymph node removed. I do have a meeting with a general onclogist scheduled but have not seen one yet im going to try to get in touch with a melanma specific oncologist to find out what they say. I still am up in the air about what to do. He did bring some good points up but i still think if im going to have to do treatments after my CLND i mind as well forgo the surgery and start the treatments instead
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- August 22, 2016 at 10:30 pm
Thank you for the advice. I just got back from my meeting with my surgical oncologist. He orderd some scans to be done an gave me the (standard of care) speech as well. My surgery hasnt been schduled yet so i have some time to look into this futrther. He said my SLB reviled that i had a very small microscopic traces show up, i to only had one lymph node removed. I do have a meeting with a general onclogist scheduled but have not seen one yet im going to try to get in touch with a melanma specific oncologist to find out what they say. I still am up in the air about what to do. He did bring some good points up but i still think if im going to have to do treatments after my CLND i mind as well forgo the surgery and start the treatments instead
-
- August 22, 2016 at 10:30 pm
Thank you for the advice. I just got back from my meeting with my surgical oncologist. He orderd some scans to be done an gave me the (standard of care) speech as well. My surgery hasnt been schduled yet so i have some time to look into this futrther. He said my SLB reviled that i had a very small microscopic traces show up, i to only had one lymph node removed. I do have a meeting with a general onclogist scheduled but have not seen one yet im going to try to get in touch with a melanma specific oncologist to find out what they say. I still am up in the air about what to do. He did bring some good points up but i still think if im going to have to do treatments after my CLND i mind as well forgo the surgery and start the treatments instead
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- August 22, 2016 at 10:15 pm
Jon,
Sorry to hear about your diagnosis. But this support group/message board is an awesome place to have found.
I am stage 3a. Right knee was my primary location. I had my WLE and one lymph node removed from my right groin during my SLNB which came back positive. So I had this same decision to make. Both my surgical oncologist and MD Anderson recommended a CLND of my right groin (standard of care). I also reached out to Sloan Kettering and they had a little bit of a different opinion basically saying that while the CLND is the standard of care, not having the surgery, going on Yervoy and having scans every 3 months is an acceptable approach.
I decided to forego the surgery. I met with my medical oncologist last week and while he did recommend me having the surgery, he is very ccomfortable in the other approach. I was very prepared for our meeting with questions and information, etc. So I will have my first Yervoy 10mg infusion on Thursday.
It's the best decision FOR ME and I'm at peace with it! I had a lot of time to think about what my decision would be until I had to make one so I feel comfortable and again, at peace with MY decision. I hope that you also get to that point as well Jon! It's easy to tell or recommend to someone else what they should do, but try and do and get to a place in your heart that you know is the best decision FOR YOU!
Good luck with everything and please stay connected to this board…it's been great and very helpful for me!!
Stacy
-
- August 22, 2016 at 10:15 pm
Jon,
Sorry to hear about your diagnosis. But this support group/message board is an awesome place to have found.
I am stage 3a. Right knee was my primary location. I had my WLE and one lymph node removed from my right groin during my SLNB which came back positive. So I had this same decision to make. Both my surgical oncologist and MD Anderson recommended a CLND of my right groin (standard of care). I also reached out to Sloan Kettering and they had a little bit of a different opinion basically saying that while the CLND is the standard of care, not having the surgery, going on Yervoy and having scans every 3 months is an acceptable approach.
I decided to forego the surgery. I met with my medical oncologist last week and while he did recommend me having the surgery, he is very ccomfortable in the other approach. I was very prepared for our meeting with questions and information, etc. So I will have my first Yervoy 10mg infusion on Thursday.
It's the best decision FOR ME and I'm at peace with it! I had a lot of time to think about what my decision would be until I had to make one so I feel comfortable and again, at peace with MY decision. I hope that you also get to that point as well Jon! It's easy to tell or recommend to someone else what they should do, but try and do and get to a place in your heart that you know is the best decision FOR YOU!
Good luck with everything and please stay connected to this board…it's been great and very helpful for me!!
Stacy
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Tagged: cutaneous melanoma
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