› Forums › General Melanoma Community › SNB decision
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Bob B..
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- June 28, 2011 at 5:53 pm
My oncologist told me I have a decision to make. My depth is .6mm, but it is Clarks Level IV. It was excised with clear margins all around, but he says there is a 2% chance it has spread to my lymph nodes. A Sentinel Node Biopsy is the only way to know that for sure. It seems like a pretty large procedure to do when there is a 98% chance that it wont be of any benefit. I hate to admit that the size of the scar that it will leave me on my face and neck is a factor for me. To be honest, if it was anywhere else besides my face, I wouldn't have such a dilemna.
My oncologist told me I have a decision to make. My depth is .6mm, but it is Clarks Level IV. It was excised with clear margins all around, but he says there is a 2% chance it has spread to my lymph nodes. A Sentinel Node Biopsy is the only way to know that for sure. It seems like a pretty large procedure to do when there is a 98% chance that it wont be of any benefit. I hate to admit that the size of the scar that it will leave me on my face and neck is a factor for me. To be honest, if it was anywhere else besides my face, I wouldn't have such a dilemna.
My oncologist told me that he himself would not get the procedure done if he was in my shoes. He said that 98% is pretty good odds. He did offer me as an intermediary procedure an ultasound, but he said that's not nearly as reliable as an SNB. I know that I'm lucky to be dealing with the kind of odds that I am. I'm deeply thankful for that. I'm leaning towards the ultrasound and so is my sister, who has been wonderfully supportive. May I ask… if you were were in my situation before, what did you do and why?
Much thanks, Steve
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- June 28, 2011 at 6:27 pm
Steve,
It's like this, melanoma isn't called "the beast" for nothing. 98% isn't 100%. Do you really want to fall in the 2%? Your onc can say what he would do if he were in your shoes only because he's not. If he were, his story might just change. Your sister isn't in your shoes either. Glad you have great support, but remember, YOUR shoes. Not hers.
2% represents people. A pretty large number actually. The only way you're going to know is do the SNB. BTW, is this onc a melanoma specialist? See one if he's not.
I'll be harsh, what good is a pretty face and neck if it does, indeed, turn out that you're in that 2%? I'd rather know. I pray you are in the 98%. But, there's a good plastic surgeon out there who will love you! Faces and necks are fixable. Death isn't. Don't play around with this.
The nature of melanoma is that it's very volatile and unpredictable. And once that word is applied to you, you have to be the one to stay on top of it. Otherwise, you're going to find your statistics changing. Stats are good up to a point. Don't use them wrong.
If it's in your lymph nodes, now is the time to find out and take care of it. If it's not, we'll all happy dance with you.
Grace and peace,
Carol
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- June 28, 2011 at 6:52 pm
Steve,
I should have explained something. I have two lifelong conditions and both of them have similar stats. 94-96% of the population doesn't get RSD (Reflex Sympathetic Distrophy) while 4-6% does. I have it.
Same stats for Pigment Dispersion Syndrome, which is extremely rare and can lead to its own glaucoma. 4-6% of the population will get it. I'm in that population too.
For two different conditions, I live in the numbers we choose to ignore because we all want to be in that group that doesn't get whatever..in your case, melanoma. But I'm living proof that people make up those unpopular stats. They aren't just numbers to shrug off.
Do what you can to make sure you are where you want to be. Life with the decisions you make but make decisions so you can live.
That's all.
Grace and peace,
Carol
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- June 28, 2011 at 6:52 pm
Steve,
I should have explained something. I have two lifelong conditions and both of them have similar stats. 94-96% of the population doesn't get RSD (Reflex Sympathetic Distrophy) while 4-6% does. I have it.
Same stats for Pigment Dispersion Syndrome, which is extremely rare and can lead to its own glaucoma. 4-6% of the population will get it. I'm in that population too.
For two different conditions, I live in the numbers we choose to ignore because we all want to be in that group that doesn't get whatever..in your case, melanoma. But I'm living proof that people make up those unpopular stats. They aren't just numbers to shrug off.
Do what you can to make sure you are where you want to be. Life with the decisions you make but make decisions so you can live.
That's all.
Grace and peace,
Carol
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- June 28, 2011 at 6:59 pm
Hi Steve,
It's ultimately your decision – not your dr's or your family. The fact that your melanoma is thin, is a good thing, but it's down to the subcutaneous fat, so it may or may not have entered your lymph system. For peace of mind, you might want to consider the SNB, but if you're comfortable with a watch and wait approach, that's okay too. If your melanoma was deep – greater than 4mm – I would 100% get the SNB, but hopefully other people with similar experiences as you will chime in.
I truly hope you're dealing with a melanoma expert because anything less is a waste of your time. Most of the time, the thickness of the melanoma is an indication that it has spread to lymph nodes or not, so maybe because it's thin, your Dr isn't overly concerned. My melanoma specialist said my melanoma probably wasn't coming back anytime soon, but it spread to my lungs in less then 2 months. This is the only cancer that has a mind of it's own and it's a wild one.
Best of luck to you! I wish you many years of NED!
Lisa
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- June 28, 2011 at 6:59 pm
Hi Steve,
It's ultimately your decision – not your dr's or your family. The fact that your melanoma is thin, is a good thing, but it's down to the subcutaneous fat, so it may or may not have entered your lymph system. For peace of mind, you might want to consider the SNB, but if you're comfortable with a watch and wait approach, that's okay too. If your melanoma was deep – greater than 4mm – I would 100% get the SNB, but hopefully other people with similar experiences as you will chime in.
I truly hope you're dealing with a melanoma expert because anything less is a waste of your time. Most of the time, the thickness of the melanoma is an indication that it has spread to lymph nodes or not, so maybe because it's thin, your Dr isn't overly concerned. My melanoma specialist said my melanoma probably wasn't coming back anytime soon, but it spread to my lungs in less then 2 months. This is the only cancer that has a mind of it's own and it's a wild one.
Best of luck to you! I wish you many years of NED!
Lisa
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- June 10, 2012 at 6:45 am
All of us have heard much the same reasons you give for doing a SLNB. I have also heard them from oncologists, dermatologists and well-meaning friends- who all counsel "making sure", "sleeping better at night", etc. We can dispute your argument- logically. But we there is no way we can dispute it- emotionally. As Janner and others have said, it is a decision we must all make based largely on our own particular state of mind.
I was offered an SLNB two years ago for a Breslow .67 and .8 (second opinion). I declined. There has been no recurrence- maybe I was lucky. We'll never know…. Recently I've been offered an SLNB again- for a third primary, shave biopsy .94 transected. We of course cannot know how deep it goes until a WLE is performed.
I will decline an SLNB again. Bad decision? Got lucky once, foolishly hope to get lucky again? Maybe. But here's the point: We try to make our decisions based on statistics, common sense, logic. But the BIG issue is- as far as I am concerned- can we live with the uncertainty that we also know is an integral part of life? Can we bear the 3 or 5 or 10% risk we are told we run by declining an SLNB? It's strictly individual It's emotional, with a link, dubious at best, to objective reality .
Others must take their own chances, I will take mine. And remind family, friends and doctors they cannot make our decisions for us. We are all unique individuals and must make our own.
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- June 10, 2012 at 6:45 am
All of us have heard much the same reasons you give for doing a SLNB. I have also heard them from oncologists, dermatologists and well-meaning friends- who all counsel "making sure", "sleeping better at night", etc. We can dispute your argument- logically. But we there is no way we can dispute it- emotionally. As Janner and others have said, it is a decision we must all make based largely on our own particular state of mind.
I was offered an SLNB two years ago for a Breslow .67 and .8 (second opinion). I declined. There has been no recurrence- maybe I was lucky. We'll never know…. Recently I've been offered an SLNB again- for a third primary, shave biopsy .94 transected. We of course cannot know how deep it goes until a WLE is performed.
I will decline an SLNB again. Bad decision? Got lucky once, foolishly hope to get lucky again? Maybe. But here's the point: We try to make our decisions based on statistics, common sense, logic. But the BIG issue is- as far as I am concerned- can we live with the uncertainty that we also know is an integral part of life? Can we bear the 3 or 5 or 10% risk we are told we run by declining an SLNB? It's strictly individual It's emotional, with a link, dubious at best, to objective reality .
Others must take their own chances, I will take mine. And remind family, friends and doctors they cannot make our decisions for us. We are all unique individuals and must make our own.
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- June 10, 2012 at 6:45 am
All of us have heard much the same reasons you give for doing a SLNB. I have also heard them from oncologists, dermatologists and well-meaning friends- who all counsel "making sure", "sleeping better at night", etc. We can dispute your argument- logically. But we there is no way we can dispute it- emotionally. As Janner and others have said, it is a decision we must all make based largely on our own particular state of mind.
I was offered an SLNB two years ago for a Breslow .67 and .8 (second opinion). I declined. There has been no recurrence- maybe I was lucky. We'll never know…. Recently I've been offered an SLNB again- for a third primary, shave biopsy .94 transected. We of course cannot know how deep it goes until a WLE is performed.
I will decline an SLNB again. Bad decision? Got lucky once, foolishly hope to get lucky again? Maybe. But here's the point: We try to make our decisions based on statistics, common sense, logic. But the BIG issue is- as far as I am concerned- can we live with the uncertainty that we also know is an integral part of life? Can we bear the 3 or 5 or 10% risk we are told we run by declining an SLNB? It's strictly individual It's emotional, with a link, dubious at best, to objective reality .
Others must take their own chances, I will take mine. And remind family, friends and doctors they cannot make our decisions for us. We are all unique individuals and must make our own.
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- June 28, 2011 at 6:27 pm
Steve,
It's like this, melanoma isn't called "the beast" for nothing. 98% isn't 100%. Do you really want to fall in the 2%? Your onc can say what he would do if he were in your shoes only because he's not. If he were, his story might just change. Your sister isn't in your shoes either. Glad you have great support, but remember, YOUR shoes. Not hers.
2% represents people. A pretty large number actually. The only way you're going to know is do the SNB. BTW, is this onc a melanoma specialist? See one if he's not.
I'll be harsh, what good is a pretty face and neck if it does, indeed, turn out that you're in that 2%? I'd rather know. I pray you are in the 98%. But, there's a good plastic surgeon out there who will love you! Faces and necks are fixable. Death isn't. Don't play around with this.
The nature of melanoma is that it's very volatile and unpredictable. And once that word is applied to you, you have to be the one to stay on top of it. Otherwise, you're going to find your statistics changing. Stats are good up to a point. Don't use them wrong.
If it's in your lymph nodes, now is the time to find out and take care of it. If it's not, we'll all happy dance with you.
Grace and peace,
Carol
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- June 28, 2011 at 7:02 pm
Steve,
May I suggest this? Ask if you could have a team approach to the surgery. Surgical oncologist for the biopsy, plastic surgeon to close.
I needed a neck biopsy and my scalp re-sected. I flatly told them I wanted them both done in one procedure. It took some juggling of doctor's surgery schedules, but it got done.
I think it might not be that uncommon, but sadly, you might have to ASK for it. Kind of like AAA or military discounts! They are out there, but you must ask for them.
I had an excellent outcome, it took six hours (my longest surgery yet), but the "easiest". I found the plastic surgeon to be wonderful. They are much more proactive as far as pain management, explanations, etc. I believe it's because a lot of plastic surgery is elective, so they are at great pains (ha, a pain joke!) to ensure you are educated and comfortable before and after surgery.
Or, you might need a head/neck/face specialist. My normal oncology surgeon referred me to one when I had my entire neck dissected. Again, an excellent outcome for me.
I understand your hesitation. I was upset just having neck incisions, and they aren't on my face. We're only human…
Blessings,
TracyLee
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- June 28, 2011 at 7:02 pm
Steve,
May I suggest this? Ask if you could have a team approach to the surgery. Surgical oncologist for the biopsy, plastic surgeon to close.
I needed a neck biopsy and my scalp re-sected. I flatly told them I wanted them both done in one procedure. It took some juggling of doctor's surgery schedules, but it got done.
I think it might not be that uncommon, but sadly, you might have to ASK for it. Kind of like AAA or military discounts! They are out there, but you must ask for them.
I had an excellent outcome, it took six hours (my longest surgery yet), but the "easiest". I found the plastic surgeon to be wonderful. They are much more proactive as far as pain management, explanations, etc. I believe it's because a lot of plastic surgery is elective, so they are at great pains (ha, a pain joke!) to ensure you are educated and comfortable before and after surgery.
Or, you might need a head/neck/face specialist. My normal oncology surgeon referred me to one when I had my entire neck dissected. Again, an excellent outcome for me.
I understand your hesitation. I was upset just having neck incisions, and they aren't on my face. We're only human…
Blessings,
TracyLee
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- June 28, 2011 at 8:07 pm
There's a little more information you need to ask for. Was the original mole ulcerated and what is the mitosis rate. Usually they only do SNB's for .75 if ulcerated and 1.0 if not. The breslow is the important number, Clark's level isn't used as much anymore.
Just wanted you to know that you can have a clear SNB but that gives no promises. Could be that it hasn't spread that far yet but might. Not trying to sway you just want to give you something else to think about. I've been stage IV since 06 but the first time mine went to the lymph nodes was this past year.
Whatever decision you make just remember that you can only look forwards, not backwards.
Linda
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- June 28, 2011 at 8:07 pm
There's a little more information you need to ask for. Was the original mole ulcerated and what is the mitosis rate. Usually they only do SNB's for .75 if ulcerated and 1.0 if not. The breslow is the important number, Clark's level isn't used as much anymore.
Just wanted you to know that you can have a clear SNB but that gives no promises. Could be that it hasn't spread that far yet but might. Not trying to sway you just want to give you something else to think about. I've been stage IV since 06 but the first time mine went to the lymph nodes was this past year.
Whatever decision you make just remember that you can only look forwards, not backwards.
Linda
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- June 28, 2011 at 8:24 pm
Thank you for your replies TracyLee, Carol, Lisa and Linda. My oncologist is a melanoma specialist at Emory. My mitosis rate is 1, breslow depth .6mm, and it was not ulcerated. My stage is 1b.
I've been doing a lot of reading about SLNB's and found this:
This technique only has therapeutic value in patients with positive nodes.[3] Failure to detect cancer cells in the sentinel node can lead to a false negative result – there may still be cancerous cells in the lymph node basin. In addition, there is no compelling evidence that patients who have a full lymph node dissection as a result of a positive sentinel lymph node result have improved survival compared to those who do not have a full dissection until later in their disease, when the lymph nodes can be felt by a physician. Such patients may be having an unnecessary full dissection, with the attendant risk of lymphedema.[4]
As if I wasn't confused enough.
-Steve
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- June 28, 2011 at 8:24 pm
Thank you for your replies TracyLee, Carol, Lisa and Linda. My oncologist is a melanoma specialist at Emory. My mitosis rate is 1, breslow depth .6mm, and it was not ulcerated. My stage is 1b.
I've been doing a lot of reading about SLNB's and found this:
This technique only has therapeutic value in patients with positive nodes.[3] Failure to detect cancer cells in the sentinel node can lead to a false negative result – there may still be cancerous cells in the lymph node basin. In addition, there is no compelling evidence that patients who have a full lymph node dissection as a result of a positive sentinel lymph node result have improved survival compared to those who do not have a full dissection until later in their disease, when the lymph nodes can be felt by a physician. Such patients may be having an unnecessary full dissection, with the attendant risk of lymphedema.[4]
As if I wasn't confused enough.
-Steve
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- June 28, 2011 at 8:30 pm
Steve,
Have you had your wide excision yet? If you have then the pathway has already been disturbed. If you haven't then the decision is still there. Have you thought of a 2nd opinion? Just not sure why they have suggested it for a thin lesion unless there is more info.
Linda
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- June 28, 2011 at 8:30 pm
Steve,
Have you had your wide excision yet? If you have then the pathway has already been disturbed. If you haven't then the decision is still there. Have you thought of a 2nd opinion? Just not sure why they have suggested it for a thin lesion unless there is more info.
Linda
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- June 28, 2011 at 8:54 pm
Yes, I had the wide excision and it came back with clear margins. I think I was offered the option of an SLNB because of the Clark level IV and mitosis of 1. Also, apparently my referring dermatologist wrote some note that said I was extrememely anxious about the melanoma and might need an SLNB to put my mind to rest. I think I probably should get a second opinion. This doctor threw so many percentages at me and seemed kind of impatient with how unnerved I was by the whole experience. I hate it when doctors give a sense of being late for their next appointment when they're talking to you. I got a sense that he thought I shouldn't be as anxious as I am. I can't control how I feel, though. I've been shaken to my core by this.
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- June 28, 2011 at 8:54 pm
Yes, I had the wide excision and it came back with clear margins. I think I was offered the option of an SLNB because of the Clark level IV and mitosis of 1. Also, apparently my referring dermatologist wrote some note that said I was extrememely anxious about the melanoma and might need an SLNB to put my mind to rest. I think I probably should get a second opinion. This doctor threw so many percentages at me and seemed kind of impatient with how unnerved I was by the whole experience. I hate it when doctors give a sense of being late for their next appointment when they're talking to you. I got a sense that he thought I shouldn't be as anxious as I am. I can't control how I feel, though. I've been shaken to my core by this.
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- June 28, 2011 at 9:05 pm
I know. There's other info out there that will tell you that this can be used in the staging process itself. It is confusing and you come here, and yes, we may tend to think worse case scenario, I'll never argue with Janner, especially when she's right!, but many of us, not all of us, get up close and personal with the worse case scenario and we don't like company! I'd rather think and plan on the worse case and be prepared if it happens and pleasantly surprised if it doesn't!
I will never know if having all my lymph nodes removed (on surg onc advice), with only first sentinel node being positive, was "unnecessary" and I did get that lymphedema immediately. I'll never be positive that I've been ned ever since, and that was late 2008, because of the surgeries.
But, I'll never know if getting that chance removed saved my life and I wouldn't have known the extent that it was there without the SNB. I knew mel was in at least one node because of the wonderful dye test they do before the SNB.
I often ask people what their gut tells them. What does your gut tell you about this? While that's not totally reliable either, it can often serve as a good indicator of the right way to go..not what your head would really like to do, but that gut feeling?
If you're a praying man, I'd be waaayyyy remiss and out of character if I didn't say pray about this and seek God's direction.
Yes, it's ultimately your choice. What bothers me about your case is your onc gave you a choice! You've got a stat over your head. He didn't tell you you were 100% good to go. He said there's a chance, slim but a chance.
Lord, in Your mercy, open doors for Steve that need opening and guide him in the right decision. Thank You. Amen.
Grace and peace,
Carol
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- June 10, 2012 at 6:10 am
May I ask a dumb question? How did you know "at least one node had mel because of the dye test BEFORE the SNB"? Isn't the die strictly to determine the sentinel node to which it likely flows from the lesion- but the dye cannot indicate the presence of melanoma in the node(s)?
Detection of melanoma is possible only AFTER the SNB. Not before.
Or have I misunderstood? Thanks much.
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- June 10, 2012 at 6:10 am
May I ask a dumb question? How did you know "at least one node had mel because of the dye test BEFORE the SNB"? Isn't the die strictly to determine the sentinel node to which it likely flows from the lesion- but the dye cannot indicate the presence of melanoma in the node(s)?
Detection of melanoma is possible only AFTER the SNB. Not before.
Or have I misunderstood? Thanks much.
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- June 10, 2012 at 6:10 am
May I ask a dumb question? How did you know "at least one node had mel because of the dye test BEFORE the SNB"? Isn't the die strictly to determine the sentinel node to which it likely flows from the lesion- but the dye cannot indicate the presence of melanoma in the node(s)?
Detection of melanoma is possible only AFTER the SNB. Not before.
Or have I misunderstood? Thanks much.
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- June 28, 2011 at 9:05 pm
I know. There's other info out there that will tell you that this can be used in the staging process itself. It is confusing and you come here, and yes, we may tend to think worse case scenario, I'll never argue with Janner, especially when she's right!, but many of us, not all of us, get up close and personal with the worse case scenario and we don't like company! I'd rather think and plan on the worse case and be prepared if it happens and pleasantly surprised if it doesn't!
I will never know if having all my lymph nodes removed (on surg onc advice), with only first sentinel node being positive, was "unnecessary" and I did get that lymphedema immediately. I'll never be positive that I've been ned ever since, and that was late 2008, because of the surgeries.
But, I'll never know if getting that chance removed saved my life and I wouldn't have known the extent that it was there without the SNB. I knew mel was in at least one node because of the wonderful dye test they do before the SNB.
I often ask people what their gut tells them. What does your gut tell you about this? While that's not totally reliable either, it can often serve as a good indicator of the right way to go..not what your head would really like to do, but that gut feeling?
If you're a praying man, I'd be waaayyyy remiss and out of character if I didn't say pray about this and seek God's direction.
Yes, it's ultimately your choice. What bothers me about your case is your onc gave you a choice! You've got a stat over your head. He didn't tell you you were 100% good to go. He said there's a chance, slim but a chance.
Lord, in Your mercy, open doors for Steve that need opening and guide him in the right decision. Thank You. Amen.
Grace and peace,
Carol
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- June 28, 2011 at 8:34 pm
The SNB isn't going to change the size of the scar on your face. You will have a small incision site on your neck where the lymph node would be removed. The SNB scar would just be opening the skin, not removing a hunk of it, so it should heal cleanly without much visible scaring after it heals. At least for me, most of my incision scars in not stress areas like the neck have healed to just a small line. I expect the SNB scar would be like that for you. The WLE is something else as they remove so much extra tissue.
Would I do the SNB? I think I would want to know the mitosis. Clarks Level has basically been dropped in favor of mitosis now. If it were <1, then the lesion would be considered very low risk and I probably wouldn't have it. If the mitosis were higher, I would have a harder decision.
I had a .58mm Clark II removed 19 years ago. No SNB back then. I also had a .88mm Clark III removed 10 years ago. Both had 1 mitosis. But even the .88mm was considered "low risk" and I didn't have the SNB for it either. Since Clarks Level is so subjective, I don't think I'd base the decision to have the SNB based on that factor alone.
In the end, it all comes down to what you can live with. There are currently studies being done comparing ultrasound monitoring of nodes to the SNB, but I haven't seen any results yet. This does seem a viable followup possibility. I don't really regret not having a SNB, and I was fine living with a tiny bit of uncertainty. You have to do what makes YOU feel comfortable, not anyone else. Most everyone here thinks in terms of worst case scenarios so you will always get people erring on the more aggressive side. But in your case, the SNB is still considered "optional". The SNB is not considered a therapy, only a diagnostic tool. Both options could easily be backed up in your case. Do what makes the most sense to you!
Best wishes,
Janner
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- June 28, 2011 at 8:34 pm
The SNB isn't going to change the size of the scar on your face. You will have a small incision site on your neck where the lymph node would be removed. The SNB scar would just be opening the skin, not removing a hunk of it, so it should heal cleanly without much visible scaring after it heals. At least for me, most of my incision scars in not stress areas like the neck have healed to just a small line. I expect the SNB scar would be like that for you. The WLE is something else as they remove so much extra tissue.
Would I do the SNB? I think I would want to know the mitosis. Clarks Level has basically been dropped in favor of mitosis now. If it were <1, then the lesion would be considered very low risk and I probably wouldn't have it. If the mitosis were higher, I would have a harder decision.
I had a .58mm Clark II removed 19 years ago. No SNB back then. I also had a .88mm Clark III removed 10 years ago. Both had 1 mitosis. But even the .88mm was considered "low risk" and I didn't have the SNB for it either. Since Clarks Level is so subjective, I don't think I'd base the decision to have the SNB based on that factor alone.
In the end, it all comes down to what you can live with. There are currently studies being done comparing ultrasound monitoring of nodes to the SNB, but I haven't seen any results yet. This does seem a viable followup possibility. I don't really regret not having a SNB, and I was fine living with a tiny bit of uncertainty. You have to do what makes YOU feel comfortable, not anyone else. Most everyone here thinks in terms of worst case scenarios so you will always get people erring on the more aggressive side. But in your case, the SNB is still considered "optional". The SNB is not considered a therapy, only a diagnostic tool. Both options could easily be backed up in your case. Do what makes the most sense to you!
Best wishes,
Janner
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- June 28, 2011 at 9:26 pm
Ultrasound can etermine swelling/growth of a node as well as lower density areas in it that might denote cancer. They did an ultrasound of my husband's lymph nodes prior to removal for this reason.
Michelle, wife of Don
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- June 28, 2011 at 9:26 pm
Ultrasound can etermine swelling/growth of a node as well as lower density areas in it that might denote cancer. They did an ultrasound of my husband's lymph nodes prior to removal for this reason.
Michelle, wife of Don
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- June 28, 2011 at 9:27 pm
Lymph nodes are monitored for any size/structure change – at least that is my understanding. Ultrasound may not be able to tell if you have micromets in your lymph node at this point, but if you watch the nodes for change as part of the followup, you can have the node biopsied / removed if the node appears to be changing. If you go to clnicaltrials.gov, you might be able to find a current clinical trial discussing that. As I said, I know people who have participated in the trial have posted here, but I haven't heard of any trial results yet.
Best wishes,
Janner
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- June 28, 2011 at 9:27 pm
Lymph nodes are monitored for any size/structure change – at least that is my understanding. Ultrasound may not be able to tell if you have micromets in your lymph node at this point, but if you watch the nodes for change as part of the followup, you can have the node biopsied / removed if the node appears to be changing. If you go to clnicaltrials.gov, you might be able to find a current clinical trial discussing that. As I said, I know people who have participated in the trial have posted here, but I haven't heard of any trial results yet.
Best wishes,
Janner
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- June 28, 2011 at 8:59 pm
Did the path report talk about your melanoma being near a vascular or lymphatic channel? That would be a clear descion for me.
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- June 29, 2011 at 3:10 pm
Sorry, I came in a little late.
So, from reading, you have already had the WLE.
I tried to put myself in your shoes, and came up with about a 50/50 yes and no, so I think I understand where you are coming from.
In the end, you do what makes you comfortable. If you think you can do without a SNB, and not know concerning node(s), by all means don’t have one, as that is where it is at concerning a medical standpoint: it is not ulcerated, and the odds are high in your favor of negative nodes. As you are probably aware, under current medical guidelines, a SNB: normally performed at 1.0 mm Breslow, if not ulcerated, and .75 mm Breslow if ulcerated. Also, a one mitosis? Not a reason to have a SNB.
If you do not think you can live with the decision of not knowing, by all means for peace of mind, have a SNB done.
Also keep in mind, if you decide to have a SNB, there is the off chance the correct nodes may not even light up due to the fact that you already had the WLE and the drainage path of the nodes may be compromised. Also, the incision would not be the same as the WLE, and should heal nicely. So, in that aspect, another scar on your neck should not be a problem.
In the end, the decision is yours, but from a medical standpoint, it is not standard protocol.
Michael-1b as well
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- June 29, 2011 at 3:10 pm
Sorry, I came in a little late.
So, from reading, you have already had the WLE.
I tried to put myself in your shoes, and came up with about a 50/50 yes and no, so I think I understand where you are coming from.
In the end, you do what makes you comfortable. If you think you can do without a SNB, and not know concerning node(s), by all means don’t have one, as that is where it is at concerning a medical standpoint: it is not ulcerated, and the odds are high in your favor of negative nodes. As you are probably aware, under current medical guidelines, a SNB: normally performed at 1.0 mm Breslow, if not ulcerated, and .75 mm Breslow if ulcerated. Also, a one mitosis? Not a reason to have a SNB.
If you do not think you can live with the decision of not knowing, by all means for peace of mind, have a SNB done.
Also keep in mind, if you decide to have a SNB, there is the off chance the correct nodes may not even light up due to the fact that you already had the WLE and the drainage path of the nodes may be compromised. Also, the incision would not be the same as the WLE, and should heal nicely. So, in that aspect, another scar on your neck should not be a problem.
In the end, the decision is yours, but from a medical standpoint, it is not standard protocol.
Michael-1b as well
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- June 29, 2011 at 6:03 pm
I want to thank everyone for their feedback. I deeply appreciate it. I'm leaning towards doing the SLNB because of the Clark level IV and because favorable odds hasn't really been my friend so far. It was against the odds that I would get melanoma in the first place. I'm going to get a second opinion first and am in the market for a melanoma oncologist who takes an interest in his/her patients and is willing to spend some time with me.
The procedure that my oncologist talked to me about is one he called an SLNB, but after doing some research, doesn't seem to resemble one. He talked about a very long incision down the side of my face just in front of the ear and down the neck and that all the lymph nodes along that line would be removed and inspected. But an SNLB, as I understand it, is using radioactive dye to identify the sentinel node, removing that and then removing the other nodes only if the sentinal node has disease. Perhaps since I've already had the WLE, it's no longer possible to identify the sentinel node. But then why call the procedure that's being offered to me an SLNB? Also, I've read some medical literature that says that it is indeed possible to identify the sentinal node after the WLE. I'm worried that the doctor was talking about such a long incision as a way of discouraging me from doing the SLNB, which I could tell he's not in favor of.
Steve
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- June 29, 2011 at 6:03 pm
I want to thank everyone for their feedback. I deeply appreciate it. I'm leaning towards doing the SLNB because of the Clark level IV and because favorable odds hasn't really been my friend so far. It was against the odds that I would get melanoma in the first place. I'm going to get a second opinion first and am in the market for a melanoma oncologist who takes an interest in his/her patients and is willing to spend some time with me.
The procedure that my oncologist talked to me about is one he called an SLNB, but after doing some research, doesn't seem to resemble one. He talked about a very long incision down the side of my face just in front of the ear and down the neck and that all the lymph nodes along that line would be removed and inspected. But an SNLB, as I understand it, is using radioactive dye to identify the sentinel node, removing that and then removing the other nodes only if the sentinal node has disease. Perhaps since I've already had the WLE, it's no longer possible to identify the sentinel node. But then why call the procedure that's being offered to me an SLNB? Also, I've read some medical literature that says that it is indeed possible to identify the sentinal node after the WLE. I'm worried that the doctor was talking about such a long incision as a way of discouraging me from doing the SLNB, which I could tell he's not in favor of.
Steve
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- June 29, 2011 at 6:11 pm
Steve,
http://www.aimatmelanoma.org/aim-for-answers/finding-the-right-doctor.html
This link should be able to help you find a mel spec near you. it would be helpful if you'd fill out a profile so we can at least see where you're from.
What you undestand the SNB tob e is what it is…after the description you've just given of what your doctor told you it is, I'd be petrified too! Somehow, you didn NOT get hold of a very knowledgeable onc…or, your last sentence is right on target…either way, scary.
I'm glad you're getting a second opinion, but do move quickly on this.
All the best to you.
Grace and peace,
Carol
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- June 29, 2011 at 6:11 pm
Steve,
http://www.aimatmelanoma.org/aim-for-answers/finding-the-right-doctor.html
This link should be able to help you find a mel spec near you. it would be helpful if you'd fill out a profile so we can at least see where you're from.
What you undestand the SNB tob e is what it is…after the description you've just given of what your doctor told you it is, I'd be petrified too! Somehow, you didn NOT get hold of a very knowledgeable onc…or, your last sentence is right on target…either way, scary.
I'm glad you're getting a second opinion, but do move quickly on this.
All the best to you.
Grace and peace,
Carol
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- June 29, 2011 at 8:04 pm
Steve,
It would be a surgical oncologist you would talk to about this procedure, not a melanoma oncologist. The mel onc knows the ins and outs of the newest trials and is great for explaining the disease itself to you. I go to a local oncologist and a melanoma specialist that I need to travel to. When I have "discussions" with both of them I can tell the difference. But remember, I'm stage IV, not dealing with a primary! I also have a surgical oncologist whose primary interest is breast cancer and melanoma.
If there is no surgical oncologist in your area that has melanoma experience then go for one that specializes in breast cancer. Breast cancer patients also have SNB's done. What you have had explained to you is a full node dissection. That is offered when they find disease once the SNB is done. That is definitely overkill for a .6mm lesion! I'm actually surprised that is even being discussed with you!
I realize that this has totally stressed you out. After understanding the information you've been given I'm sure it hasn't helped.
No matter what you do, talk to a different professional before even considering this.
Linda
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- June 30, 2011 at 3:25 am
I totally agree with Linda.
I had the full neck dissection with 23 lymph nodes removed from my neck. This was AFTER my sentinal node biopsy revealed a .66 mm tumor. Then it only made sense to remove the rest of the nodes in that area.
I agree you need a serious second opinion.
Nicki, Stage 3b, scalp
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- June 30, 2011 at 3:25 am
I totally agree with Linda.
I had the full neck dissection with 23 lymph nodes removed from my neck. This was AFTER my sentinal node biopsy revealed a .66 mm tumor. Then it only made sense to remove the rest of the nodes in that area.
I agree you need a serious second opinion.
Nicki, Stage 3b, scalp
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- June 29, 2011 at 8:04 pm
Steve,
It would be a surgical oncologist you would talk to about this procedure, not a melanoma oncologist. The mel onc knows the ins and outs of the newest trials and is great for explaining the disease itself to you. I go to a local oncologist and a melanoma specialist that I need to travel to. When I have "discussions" with both of them I can tell the difference. But remember, I'm stage IV, not dealing with a primary! I also have a surgical oncologist whose primary interest is breast cancer and melanoma.
If there is no surgical oncologist in your area that has melanoma experience then go for one that specializes in breast cancer. Breast cancer patients also have SNB's done. What you have had explained to you is a full node dissection. That is offered when they find disease once the SNB is done. That is definitely overkill for a .6mm lesion! I'm actually surprised that is even being discussed with you!
I realize that this has totally stressed you out. After understanding the information you've been given I'm sure it hasn't helped.
No matter what you do, talk to a different professional before even considering this.
Linda
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- June 30, 2011 at 3:56 pm
I've decided to sack my entire medical team and have made an appointment with the dermatologist that my sister and mother go to. They originally left the doctor that I go to for this guy and they say he is much more thorough and actually takes an interest in his patients. They trust him. I will go to the surgical oncologist that this new doctor refers me to and I plan to get the SNB done if it is offered to me as an SNB and not a complete lymph node removal as my original surgical oncologist offered it. There's been a complete absence of compassion and a stream of poor information (and it seems manipulation) from my current doctors and I've had enough. I hope that making this move doesn't delay any action, if it is needed, past a critical point. I keep telling myself that the odds are heavily stacked in my favor, but it is actually driving me crazy not KNOWING if it's in my nodes. I have to find out even if it is likely to be a needless procedure. I wish I was a stronger person.
Thanks for all your help everyone in helping me reach this decision. I've been very touched by your interest in concern and I pray for positive outcomes in all of your situations.
Gratefully yours, Steve
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- June 30, 2011 at 3:56 pm
I've decided to sack my entire medical team and have made an appointment with the dermatologist that my sister and mother go to. They originally left the doctor that I go to for this guy and they say he is much more thorough and actually takes an interest in his patients. They trust him. I will go to the surgical oncologist that this new doctor refers me to and I plan to get the SNB done if it is offered to me as an SNB and not a complete lymph node removal as my original surgical oncologist offered it. There's been a complete absence of compassion and a stream of poor information (and it seems manipulation) from my current doctors and I've had enough. I hope that making this move doesn't delay any action, if it is needed, past a critical point. I keep telling myself that the odds are heavily stacked in my favor, but it is actually driving me crazy not KNOWING if it's in my nodes. I have to find out even if it is likely to be a needless procedure. I wish I was a stronger person.
Thanks for all your help everyone in helping me reach this decision. I've been very touched by your interest in concern and I pray for positive outcomes in all of your situations.
Gratefully yours, Steve
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- July 13, 2011 at 9:52 pm
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([email protected]) -
- July 13, 2011 at 9:52 pm
[email protected]
Hi Dear
How are you today, I hope all is well. My name is miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don’t let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
([email protected])
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