› Forums › General Melanoma Community › CLND for no CLND for stage IIIb melanoma with ulceration and 50 cells found in sentinel node?
- This topic has 18 replies, 4 voices, and was last updated 8 years, 7 months ago by
mitranaaseh.
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- October 30, 2016 at 3:56 pm
folks, my husband is diagnosed with stage IIIb melanoma with a fairly aggressive initial mole biopsy with ulcerationand 2.9mm and positive sentinel node biopsy with 50 cells found. Mole was on his thigh and sentinel biospy from his groin area. We are at a cross roads to decide for or against CLND. One prominent doctor says NO as there is no data to prove that CLND improves survival chances. Another prominent doctor says YES because he has a deep hip lymph node which if left with any mico mets might grow and be the channel for travel to the rest of the body before it is caught and removed with CT scans.
The doctor who is recommending surgery would perform robotic surgery for the deep node removal. He works with a robotic expert surgeon directing him during surgery. My husband would be patient number 10 for the robotoc surgery vs open surgery for melanoma. Surgeon says choosing robotics is a no brainer as it makes the recovery process much easier.
We need to decide this week if we do the surgery or not and if yes, is robotic surgery really a no brainer?
I will be posting a seperate question on opposing recommendations for him for adjuvant therapy.
I am new to this site and hope to get some guidance from all of you who have traveled down this path before.
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- October 30, 2016 at 4:04 pm
Sorry you and your husband are going through this. Basically, both docs are correct. Valid arguments can be made for and against CLND. Sadly, that kind of difficult decision is common in melanoma. There have recently been discussions of this very thing on this forum. I will link you to one of them here: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/study-melanoma-spread
Pro's and con's are discussed…and there are links to articles that talk about CLND and the data surrounding it. I do think most would agree however, that should you decide to have it done….robotic surgery causes a lot less damage than more conventional surgical methods and would be helpful. Ask more as you need…Celeste
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- October 30, 2016 at 4:04 pm
Sorry you and your husband are going through this. Basically, both docs are correct. Valid arguments can be made for and against CLND. Sadly, that kind of difficult decision is common in melanoma. There have recently been discussions of this very thing on this forum. I will link you to one of them here: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/study-melanoma-spread
Pro's and con's are discussed…and there are links to articles that talk about CLND and the data surrounding it. I do think most would agree however, that should you decide to have it done….robotic surgery causes a lot less damage than more conventional surgical methods and would be helpful. Ask more as you need…Celeste
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- November 7, 2016 at 7:35 pm
thank you so much for the info. i have been reading your blog which is very very helpful. i will keep updating my husband's case / decision in case you can offer any more input. thank you again
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- November 7, 2016 at 7:35 pm
thank you so much for the info. i have been reading your blog which is very very helpful. i will keep updating my husband's case / decision in case you can offer any more input. thank you again
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- November 7, 2016 at 7:35 pm
thank you so much for the info. i have been reading your blog which is very very helpful. i will keep updating my husband's case / decision in case you can offer any more input. thank you again
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- October 30, 2016 at 4:04 pm
Sorry you and your husband are going through this. Basically, both docs are correct. Valid arguments can be made for and against CLND. Sadly, that kind of difficult decision is common in melanoma. There have recently been discussions of this very thing on this forum. I will link you to one of them here: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/study-melanoma-spread
Pro's and con's are discussed…and there are links to articles that talk about CLND and the data surrounding it. I do think most would agree however, that should you decide to have it done….robotic surgery causes a lot less damage than more conventional surgical methods and would be helpful. Ask more as you need…Celeste
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- October 31, 2016 at 4:39 pm
Hi Anon
I was the one that posted that study that Bubbles is refering to.
U, like your husband, am still caught in the middle of this as everyboby tells me I have yo make my decision quick. In my case, the pathology report said "rare isolated cells". Yours was able to state 50 cells. I am puzzled by the different level of precision between your pathology report and mine.. I am also in conctact with a girl from Mennisota who got 2 cells identified…
Quite frankly, my soon to be fired onco surgeon took the CLND so lightly warning me about nerve damage and 30% chance of lymphodema and I asked him if he did this procedure with laparascopy and he said not at all.
So if I had to choose between human only or robot, given that it is assiting tobotics, I think I would choose robotics, IF I CHOSE THE PROCDURE!
And as for the study I posted in the other thread, it talks about the tumour burden found in lymph nodes and how it should be taken into account, and simply not positive or negative!
I do not understand fully all that is discussed and I am looking for an oncologist with an open mind here in Montreal so I could better understand what the study says particularly concerning the patients at risk…
Also, I have just about the same specs as your husband's primary.
I would be delighted if we could keep in touch because exchanging information could really be life saving. You can reach me through email if you wish. It would be easier.
Let me know
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- October 31, 2016 at 4:39 pm
Hi Anon
I was the one that posted that study that Bubbles is refering to.
U, like your husband, am still caught in the middle of this as everyboby tells me I have yo make my decision quick. In my case, the pathology report said "rare isolated cells". Yours was able to state 50 cells. I am puzzled by the different level of precision between your pathology report and mine.. I am also in conctact with a girl from Mennisota who got 2 cells identified…
Quite frankly, my soon to be fired onco surgeon took the CLND so lightly warning me about nerve damage and 30% chance of lymphodema and I asked him if he did this procedure with laparascopy and he said not at all.
So if I had to choose between human only or robot, given that it is assiting tobotics, I think I would choose robotics, IF I CHOSE THE PROCDURE!
And as for the study I posted in the other thread, it talks about the tumour burden found in lymph nodes and how it should be taken into account, and simply not positive or negative!
I do not understand fully all that is discussed and I am looking for an oncologist with an open mind here in Montreal so I could better understand what the study says particularly concerning the patients at risk…
Also, I have just about the same specs as your husband's primary.
I would be delighted if we could keep in touch because exchanging information could really be life saving. You can reach me through email if you wish. It would be easier.
Let me know
-
- October 31, 2016 at 4:39 pm
Hi Anon
I was the one that posted that study that Bubbles is refering to.
U, like your husband, am still caught in the middle of this as everyboby tells me I have yo make my decision quick. In my case, the pathology report said "rare isolated cells". Yours was able to state 50 cells. I am puzzled by the different level of precision between your pathology report and mine.. I am also in conctact with a girl from Mennisota who got 2 cells identified…
Quite frankly, my soon to be fired onco surgeon took the CLND so lightly warning me about nerve damage and 30% chance of lymphodema and I asked him if he did this procedure with laparascopy and he said not at all.
So if I had to choose between human only or robot, given that it is assiting tobotics, I think I would choose robotics, IF I CHOSE THE PROCDURE!
And as for the study I posted in the other thread, it talks about the tumour burden found in lymph nodes and how it should be taken into account, and simply not positive or negative!
I do not understand fully all that is discussed and I am looking for an oncologist with an open mind here in Montreal so I could better understand what the study says particularly concerning the patients at risk…
Also, I have just about the same specs as your husband's primary.
I would be delighted if we could keep in touch because exchanging information could really be life saving. You can reach me through email if you wish. It would be easier.
Let me know
-
- November 7, 2016 at 4:43 pm
sole, i tried to send you an email through the contact function on this forum.
our staging was changed. first the mole was read as "no ulceration" by one prominent institution. then a top university in northern california where we are read the same slides and noted ulceration which pushed us to stage IIIb. our original sentinel node reading was .1mm to .2mm and sparse. our surgeon made the extrapolation to 50 cells from that i believe. we hadsentinel node slides read again by the university and they said it was very few scattered cells and not clustered. BUT in the process of reading the sentinel sample, they "corrected" the original mole reading "(due to some clerical error") to NO ulceration so back to stage IIIa again until another reading is done.
I am honestly sure how to even digest the fact that there is so much variablity and even potential for "clerical error" on a process that should have redundancies built to ensure no silly errors 🙁
meanwhile we are losing time. my husband is deciding against CLND i think and leanign towards IPI . did you make a surgery decision yet?
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- November 7, 2016 at 4:43 pm
sole, i tried to send you an email through the contact function on this forum.
our staging was changed. first the mole was read as "no ulceration" by one prominent institution. then a top university in northern california where we are read the same slides and noted ulceration which pushed us to stage IIIb. our original sentinel node reading was .1mm to .2mm and sparse. our surgeon made the extrapolation to 50 cells from that i believe. we hadsentinel node slides read again by the university and they said it was very few scattered cells and not clustered. BUT in the process of reading the sentinel sample, they "corrected" the original mole reading "(due to some clerical error") to NO ulceration so back to stage IIIa again until another reading is done.
I am honestly sure how to even digest the fact that there is so much variablity and even potential for "clerical error" on a process that should have redundancies built to ensure no silly errors 🙁
meanwhile we are losing time. my husband is deciding against CLND i think and leanign towards IPI . did you make a surgery decision yet?
-
- November 7, 2016 at 4:43 pm
sole, i tried to send you an email through the contact function on this forum.
our staging was changed. first the mole was read as "no ulceration" by one prominent institution. then a top university in northern california where we are read the same slides and noted ulceration which pushed us to stage IIIb. our original sentinel node reading was .1mm to .2mm and sparse. our surgeon made the extrapolation to 50 cells from that i believe. we hadsentinel node slides read again by the university and they said it was very few scattered cells and not clustered. BUT in the process of reading the sentinel sample, they "corrected" the original mole reading "(due to some clerical error") to NO ulceration so back to stage IIIa again until another reading is done.
I am honestly sure how to even digest the fact that there is so much variablity and even potential for "clerical error" on a process that should have redundancies built to ensure no silly errors 🙁
meanwhile we are losing time. my husband is deciding against CLND i think and leanign towards IPI . did you make a surgery decision yet?
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- November 1, 2016 at 2:28 am
I did the clnd of my right groin 3 years ago. It was a big surgery and I did develop lymphadema but for me it wasnt even a second thought. I decided i was going to do everything in my power to live and that first meant getting rid of every cancer cell that I “knew” about. If I had to do it again I would and not think twice. I have not recurred and I also took Ipi. I came into this when it seemed less hopeful because there was less drugs available so things have came a long way in a short time for melanoma. -
- November 1, 2016 at 2:28 am
I did the clnd of my right groin 3 years ago. It was a big surgery and I did develop lymphadema but for me it wasnt even a second thought. I decided i was going to do everything in my power to live and that first meant getting rid of every cancer cell that I “knew” about. If I had to do it again I would and not think twice. I have not recurred and I also took Ipi. I came into this when it seemed less hopeful because there was less drugs available so things have came a long way in a short time for melanoma. -
- November 1, 2016 at 2:28 am
I did the clnd of my right groin 3 years ago. It was a big surgery and I did develop lymphadema but for me it wasnt even a second thought. I decided i was going to do everything in my power to live and that first meant getting rid of every cancer cell that I “knew” about. If I had to do it again I would and not think twice. I have not recurred and I also took Ipi. I came into this when it seemed less hopeful because there was less drugs available so things have came a long way in a short time for melanoma.-
- November 7, 2016 at 7:37 pm
thank you for your data. my husband is still making a decision and i am providing all the input i get from this forum to him. thank you kindly
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- November 7, 2016 at 7:37 pm
thank you for your data. my husband is still making a decision and i am providing all the input i get from this forum to him. thank you kindly
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- November 7, 2016 at 7:37 pm
thank you for your data. my husband is still making a decision and i am providing all the input i get from this forum to him. thank you kindly
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Tagged: cutaneous melanoma
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