› Forums › General Melanoma Community › Lymph node swelling and surgically induced mets
- This topic has 24 replies, 2 voices, and was last updated 10 years, 8 months ago by KnowThyself.
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- July 8, 2013 at 12:44 pm
To make a long story short, I have a lesion on my ear….They did a biopsy, a full excision, and a wide excision, however margins were NOT clean, so I am due back at the end of the month for another excision…. (All these surgeries will have happened between April 1st and July 26th of this year, so about 4 months)
To make a long story short, I have a lesion on my ear….They did a biopsy, a full excision, and a wide excision, however margins were NOT clean, so I am due back at the end of the month for another excision…. (All these surgeries will have happened between April 1st and July 26th of this year, so about 4 months)
The lesion is a .8mm level II stage 1A, however they call it 'borderline' as severe atypia is the differential diagnosis…. So far I have been treated as if it were the latter of the 2, with everyone telling me surgery is the way to go, nothing else to worry about, treatment would be the same either way…..
I even went back to my primary doc, because I wanted to talk about my path eports and other symptoms I have been having (severe headaches every day, sometimes dizzy spells) and still, he assures me nothing is related to the melanoma where it was so thin and borderline, to go ahead and have the surgery and everything will be OK….He even offered to prescribe me some pills for anxiety, I must have came across as a loony..
That was last week…well, since that day, one of my lymph nodes on my neck have been getting slightly bigger each day…..I have read about the possibility of surgically induced spreading, (since the remaining cells have easier access to the blood stream and lymph system with all the bleeding, swelling, stitches, and so-on)
My questions are:
1) Has anyone else found that the possibility of spreading due to surgeries and unclear margins is probable?
2) How long should I wait for the node to go down before I get it checked out?
Out of all of this, I have not seen an oncologist, (no one deems it necessary) and I have not had any blood work, scans, or node biopsies (again, not necessary)
When should I start to ponder the idea of it NOT being all in my head, that this could be a realistic problem that no one wants to take care of????
help?!?!?
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- July 8, 2013 at 12:56 pm
….oh and a couple more details… I got the thickness of the lesion after the wide excision, after it had already been tampered with twice… Would it be possible for the original thickness to be thicker?? I would think they'd grab the thickness from the 'full' excision, where they had the biggest piece of tissue to work with, but they didnt…
…..and also, when I went back to my primary, he checked my eyes, and their reaction to light and such, and he said they react fine, so that means there is no pressure behind them…. I trust his word more than any other, and he does tell me how it is in realistic terms, and I really don't want to doubt his opinion, however I would feel much worse if this did spread to my nodes and I didn't go back and ask for the name of an oncologist because I didnt' want to hurt anyones feelings…seems kinda silly…
Im lost… I think I'll just research the name of an ear nose and throat oncologist in my area…. I dont even know where to begin…
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- July 8, 2013 at 12:56 pm
….oh and a couple more details… I got the thickness of the lesion after the wide excision, after it had already been tampered with twice… Would it be possible for the original thickness to be thicker?? I would think they'd grab the thickness from the 'full' excision, where they had the biggest piece of tissue to work with, but they didnt…
…..and also, when I went back to my primary, he checked my eyes, and their reaction to light and such, and he said they react fine, so that means there is no pressure behind them…. I trust his word more than any other, and he does tell me how it is in realistic terms, and I really don't want to doubt his opinion, however I would feel much worse if this did spread to my nodes and I didn't go back and ask for the name of an oncologist because I didnt' want to hurt anyones feelings…seems kinda silly…
Im lost… I think I'll just research the name of an ear nose and throat oncologist in my area…. I dont even know where to begin…
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- July 8, 2013 at 12:56 pm
….oh and a couple more details… I got the thickness of the lesion after the wide excision, after it had already been tampered with twice… Would it be possible for the original thickness to be thicker?? I would think they'd grab the thickness from the 'full' excision, where they had the biggest piece of tissue to work with, but they didnt…
…..and also, when I went back to my primary, he checked my eyes, and their reaction to light and such, and he said they react fine, so that means there is no pressure behind them…. I trust his word more than any other, and he does tell me how it is in realistic terms, and I really don't want to doubt his opinion, however I would feel much worse if this did spread to my nodes and I didn't go back and ask for the name of an oncologist because I didnt' want to hurt anyones feelings…seems kinda silly…
Im lost… I think I'll just research the name of an ear nose and throat oncologist in my area…. I dont even know where to begin…
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- July 8, 2013 at 1:38 pm
The thickness should be taken from the initial biopsy, not the wide excision. The initial biopsy report should indicate whether or not the deep margins were clear or involved. This is going to be the most accurate depth indication you will get. You cannot get the depth from the wide excision. You can't just "add" the depth of the biopsy to any remaining depth found on the wide excision because it is impossible to match up tissue exactly. They can look at the wide excision to see if there is any residual melanoma but that typically isn't used for staging.
Eyes – your doc is just looking for normal reactions. He probably did that test in respect to your headaches. Probably meant there isn't any indication of high pressure. (High eye pressure is a red flag for several things but not typically cancer related). You don't normally test reactions for anything related to melanoma.
Surgically induced spread. Can anyone rule it out? No. But if it happened a lot, there would most likely be a lot more people who advance.
Neck nodes swell all the time – more so than any other nodes. You've also got a reason for that with surgical intervention which often causes swelling. Typically, they would most likely offer you antibiotics and see if that clears things up. You can also have what are called reactive nodes. These are nodes that swell as a result of trauma/surgery/whatever but never go down.
Blood work is not typically done for stage IA. There is nothing that can really be learned as far as melanoma goes. Some institutions do it for everyone and some do it for none as it has limited value for any stage. As for scans, scans do not show microscopic disease. So unless you have a tumor full blow tumor somewhere, scans are useless. And the odds of that being the case with your stage IA lesion just really are tiny. What typically happens (and why they don't do scans) is that they find some anomoly. Then they have to do tests to rule out melanoma. Then they determine with either tests or followup scans that this anomoly is just some benign barnacle that is part of you. Lots of $$$, lots of test and lots of anxiety to find out you still have nothing related to melanoma mets.
Oncologists don't have a lot to offer stage I. They treat active disease and typically once the wide excision is done, there is no active disease.
So…. since you obviously are still very worried about all this, this is what I'd probably do. I'd contact your PCP about getting some antibiotics. I'd also stop playing with the enlarged node as that can keep things swollen. If things don't resolve in a normal period of time (determined by your PCP), then I'd talk to your derm about seeing a melanoma specialist. I wouldn't find a ENT oncologist, I'd find a melanoma specialist. They are just more tuned in to anything melanoma related. The chances that this is melanoma are slim. But that doesn't mean you are crazy to disregard things that are still bothering you.
Best wishes,
Janner
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- July 8, 2013 at 1:57 pm
Hi Janner,
Thank you very much for the reply… The initial biopsy came back as 'moderate' atypia, but did not give any other details, I didn't even get a stage until the 'full' excision, which still didnt give a thickness, but only severe atypia with a borderline melanoma stage… Didnt get a thickness until the 'wide' excision, where it came back severe stypia, with the differential diagnosis of melanoma, .8mm and such…. The reason they gave no detail with the initial biopsy is they said they did not have enough of a tissue sample,…. they did a punch biopsy, and were suppose to follow up with the detail after the first 'full' excision, but by the time I got ANY detail, it had already been biopsied and removed once.. So I figured it defnitely had an impact on what the initial diagnosis would have been….
This is all so very frustrating, I just want to be SURE this has not/will not spread, and that since they have treated it as melanoma so far, surgery-wise, they follow up in the same manner…
The building I am having my suregery in at the end of the month also has a malnoma specialist in it…. I wil be giving them a call today to see if he should take pat in the pre-op/surgery/follow up…
Thanks again for the reply, I do appreciate your insight, I will definitely try to worry a little less…
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- July 8, 2013 at 2:17 pm
A partial biopsy is about the only time you can look at the rest of the tissue for depth. In general, the first biopsy gets the majority of the lesion and therefore is the best source of info.
You can always send your slides elsewhere for a second opinion.
Unfortunately, there is no guarantee with any of this. But that's also why I said I'd do the surgery for more removal. Just to be as sure as you can be that you get it all with surgery.
Hang in there.
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- July 8, 2013 at 6:41 pm
Janner-
Should I at least get a 2nd opinion on the initial biopsy? Even though they didnt have enough tissue to work with to get a whole lot of details, they should have been able to at least tell a thickness, which they did not…. They still didnt tell a thickness on the full excision….. Not until the wide excision did I receive the thickness, which at that point they said was .8mm, so seems to me it would have been much thicker to begin with? The 2 excisions already had 2nd opinions (they sent them out themselves, due to the borderline nature) but the only one that did NOT receive a 2nd opinio was the initial biopsy… Looking at it now, it gives absolutely nothing for info, and this seems to be the report in which the info would be MOST beneficial…. Id hate to walk around htinking it's .8mm, when it could very well have begun at OVER 1mm…in which case, my worries would be more than valid….
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- July 8, 2013 at 6:43 pm
….and sorry for all the questions, hard to find a voice of reason in a seemingly unreasonable time π
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- July 8, 2013 at 7:00 pm
If the first biopsy didn't have enough tissue to analyze, I doubt it would yield much more info at another shop. The depth would likely have been calculated from a sample NOT included in the original biopsy. They calculate depth from the epidermal/dermal junction into the lesion. So if the intial sample only had epidermal tissue or not enough tissue to make any determination, they would have looked at a sample they could use to calculate depth. I would definitely not be thinking that this could have been deeper and I don't think you should infer that from the initial small sample size.
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- July 8, 2013 at 7:16 pm
They do say epidermal AND dermal involvement from the biopsy… I guess I just dont know what to look for, I was looking for a number, but that makes sense, reading between the lines to see what layers were involved….. I'll just let it be, then…. And I'll have my surgery and keep my fingers crossed for clear margins… π Thanks again for your help π
-
- July 8, 2013 at 2:17 pm
A partial biopsy is about the only time you can look at the rest of the tissue for depth. In general, the first biopsy gets the majority of the lesion and therefore is the best source of info.
You can always send your slides elsewhere for a second opinion.
Unfortunately, there is no guarantee with any of this. But that's also why I said I'd do the surgery for more removal. Just to be as sure as you can be that you get it all with surgery.
Hang in there.
-
- July 8, 2013 at 2:17 pm
A partial biopsy is about the only time you can look at the rest of the tissue for depth. In general, the first biopsy gets the majority of the lesion and therefore is the best source of info.
You can always send your slides elsewhere for a second opinion.
Unfortunately, there is no guarantee with any of this. But that's also why I said I'd do the surgery for more removal. Just to be as sure as you can be that you get it all with surgery.
Hang in there.
-
- July 8, 2013 at 1:38 pm
The thickness should be taken from the initial biopsy, not the wide excision. The initial biopsy report should indicate whether or not the deep margins were clear or involved. This is going to be the most accurate depth indication you will get. You cannot get the depth from the wide excision. You can't just "add" the depth of the biopsy to any remaining depth found on the wide excision because it is impossible to match up tissue exactly. They can look at the wide excision to see if there is any residual melanoma but that typically isn't used for staging.
Eyes – your doc is just looking for normal reactions. He probably did that test in respect to your headaches. Probably meant there isn't any indication of high pressure. (High eye pressure is a red flag for several things but not typically cancer related). You don't normally test reactions for anything related to melanoma.
Surgically induced spread. Can anyone rule it out? No. But if it happened a lot, there would most likely be a lot more people who advance.
Neck nodes swell all the time – more so than any other nodes. You've also got a reason for that with surgical intervention which often causes swelling. Typically, they would most likely offer you antibiotics and see if that clears things up. You can also have what are called reactive nodes. These are nodes that swell as a result of trauma/surgery/whatever but never go down.
Blood work is not typically done for stage IA. There is nothing that can really be learned as far as melanoma goes. Some institutions do it for everyone and some do it for none as it has limited value for any stage. As for scans, scans do not show microscopic disease. So unless you have a tumor full blow tumor somewhere, scans are useless. And the odds of that being the case with your stage IA lesion just really are tiny. What typically happens (and why they don't do scans) is that they find some anomoly. Then they have to do tests to rule out melanoma. Then they determine with either tests or followup scans that this anomoly is just some benign barnacle that is part of you. Lots of $$$, lots of test and lots of anxiety to find out you still have nothing related to melanoma mets.
Oncologists don't have a lot to offer stage I. They treat active disease and typically once the wide excision is done, there is no active disease.
So…. since you obviously are still very worried about all this, this is what I'd probably do. I'd contact your PCP about getting some antibiotics. I'd also stop playing with the enlarged node as that can keep things swollen. If things don't resolve in a normal period of time (determined by your PCP), then I'd talk to your derm about seeing a melanoma specialist. I wouldn't find a ENT oncologist, I'd find a melanoma specialist. They are just more tuned in to anything melanoma related. The chances that this is melanoma are slim. But that doesn't mean you are crazy to disregard things that are still bothering you.
Best wishes,
Janner
-
- July 8, 2013 at 1:38 pm
The thickness should be taken from the initial biopsy, not the wide excision. The initial biopsy report should indicate whether or not the deep margins were clear or involved. This is going to be the most accurate depth indication you will get. You cannot get the depth from the wide excision. You can't just "add" the depth of the biopsy to any remaining depth found on the wide excision because it is impossible to match up tissue exactly. They can look at the wide excision to see if there is any residual melanoma but that typically isn't used for staging.
Eyes – your doc is just looking for normal reactions. He probably did that test in respect to your headaches. Probably meant there isn't any indication of high pressure. (High eye pressure is a red flag for several things but not typically cancer related). You don't normally test reactions for anything related to melanoma.
Surgically induced spread. Can anyone rule it out? No. But if it happened a lot, there would most likely be a lot more people who advance.
Neck nodes swell all the time – more so than any other nodes. You've also got a reason for that with surgical intervention which often causes swelling. Typically, they would most likely offer you antibiotics and see if that clears things up. You can also have what are called reactive nodes. These are nodes that swell as a result of trauma/surgery/whatever but never go down.
Blood work is not typically done for stage IA. There is nothing that can really be learned as far as melanoma goes. Some institutions do it for everyone and some do it for none as it has limited value for any stage. As for scans, scans do not show microscopic disease. So unless you have a tumor full blow tumor somewhere, scans are useless. And the odds of that being the case with your stage IA lesion just really are tiny. What typically happens (and why they don't do scans) is that they find some anomoly. Then they have to do tests to rule out melanoma. Then they determine with either tests or followup scans that this anomoly is just some benign barnacle that is part of you. Lots of $$$, lots of test and lots of anxiety to find out you still have nothing related to melanoma mets.
Oncologists don't have a lot to offer stage I. They treat active disease and typically once the wide excision is done, there is no active disease.
So…. since you obviously are still very worried about all this, this is what I'd probably do. I'd contact your PCP about getting some antibiotics. I'd also stop playing with the enlarged node as that can keep things swollen. If things don't resolve in a normal period of time (determined by your PCP), then I'd talk to your derm about seeing a melanoma specialist. I wouldn't find a ENT oncologist, I'd find a melanoma specialist. They are just more tuned in to anything melanoma related. The chances that this is melanoma are slim. But that doesn't mean you are crazy to disregard things that are still bothering you.
Best wishes,
Janner
-
- July 8, 2013 at 1:57 pm
Hi Janner,
Thank you very much for the reply… The initial biopsy came back as 'moderate' atypia, but did not give any other details, I didn't even get a stage until the 'full' excision, which still didnt give a thickness, but only severe atypia with a borderline melanoma stage… Didnt get a thickness until the 'wide' excision, where it came back severe stypia, with the differential diagnosis of melanoma, .8mm and such…. The reason they gave no detail with the initial biopsy is they said they did not have enough of a tissue sample,…. they did a punch biopsy, and were suppose to follow up with the detail after the first 'full' excision, but by the time I got ANY detail, it had already been biopsied and removed once.. So I figured it defnitely had an impact on what the initial diagnosis would have been….
This is all so very frustrating, I just want to be SURE this has not/will not spread, and that since they have treated it as melanoma so far, surgery-wise, they follow up in the same manner…
The building I am having my suregery in at the end of the month also has a malnoma specialist in it…. I wil be giving them a call today to see if he should take pat in the pre-op/surgery/follow up…
Thanks again for the reply, I do appreciate your insight, I will definitely try to worry a little less…
-
- July 8, 2013 at 1:57 pm
Hi Janner,
Thank you very much for the reply… The initial biopsy came back as 'moderate' atypia, but did not give any other details, I didn't even get a stage until the 'full' excision, which still didnt give a thickness, but only severe atypia with a borderline melanoma stage… Didnt get a thickness until the 'wide' excision, where it came back severe stypia, with the differential diagnosis of melanoma, .8mm and such…. The reason they gave no detail with the initial biopsy is they said they did not have enough of a tissue sample,…. they did a punch biopsy, and were suppose to follow up with the detail after the first 'full' excision, but by the time I got ANY detail, it had already been biopsied and removed once.. So I figured it defnitely had an impact on what the initial diagnosis would have been….
This is all so very frustrating, I just want to be SURE this has not/will not spread, and that since they have treated it as melanoma so far, surgery-wise, they follow up in the same manner…
The building I am having my suregery in at the end of the month also has a malnoma specialist in it…. I wil be giving them a call today to see if he should take pat in the pre-op/surgery/follow up…
Thanks again for the reply, I do appreciate your insight, I will definitely try to worry a little less…
-
- July 8, 2013 at 6:41 pm
Janner-
Should I at least get a 2nd opinion on the initial biopsy? Even though they didnt have enough tissue to work with to get a whole lot of details, they should have been able to at least tell a thickness, which they did not…. They still didnt tell a thickness on the full excision….. Not until the wide excision did I receive the thickness, which at that point they said was .8mm, so seems to me it would have been much thicker to begin with? The 2 excisions already had 2nd opinions (they sent them out themselves, due to the borderline nature) but the only one that did NOT receive a 2nd opinio was the initial biopsy… Looking at it now, it gives absolutely nothing for info, and this seems to be the report in which the info would be MOST beneficial…. Id hate to walk around htinking it's .8mm, when it could very well have begun at OVER 1mm…in which case, my worries would be more than valid….
-
- July 8, 2013 at 6:41 pm
Janner-
Should I at least get a 2nd opinion on the initial biopsy? Even though they didnt have enough tissue to work with to get a whole lot of details, they should have been able to at least tell a thickness, which they did not…. They still didnt tell a thickness on the full excision….. Not until the wide excision did I receive the thickness, which at that point they said was .8mm, so seems to me it would have been much thicker to begin with? The 2 excisions already had 2nd opinions (they sent them out themselves, due to the borderline nature) but the only one that did NOT receive a 2nd opinio was the initial biopsy… Looking at it now, it gives absolutely nothing for info, and this seems to be the report in which the info would be MOST beneficial…. Id hate to walk around htinking it's .8mm, when it could very well have begun at OVER 1mm…in which case, my worries would be more than valid….
-
- July 8, 2013 at 6:43 pm
….and sorry for all the questions, hard to find a voice of reason in a seemingly unreasonable time π
-
- July 8, 2013 at 6:43 pm
….and sorry for all the questions, hard to find a voice of reason in a seemingly unreasonable time π
-
- July 8, 2013 at 7:00 pm
If the first biopsy didn't have enough tissue to analyze, I doubt it would yield much more info at another shop. The depth would likely have been calculated from a sample NOT included in the original biopsy. They calculate depth from the epidermal/dermal junction into the lesion. So if the intial sample only had epidermal tissue or not enough tissue to make any determination, they would have looked at a sample they could use to calculate depth. I would definitely not be thinking that this could have been deeper and I don't think you should infer that from the initial small sample size.
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- July 8, 2013 at 7:00 pm
If the first biopsy didn't have enough tissue to analyze, I doubt it would yield much more info at another shop. The depth would likely have been calculated from a sample NOT included in the original biopsy. They calculate depth from the epidermal/dermal junction into the lesion. So if the intial sample only had epidermal tissue or not enough tissue to make any determination, they would have looked at a sample they could use to calculate depth. I would definitely not be thinking that this could have been deeper and I don't think you should infer that from the initial small sample size.
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- July 8, 2013 at 7:16 pm
They do say epidermal AND dermal involvement from the biopsy… I guess I just dont know what to look for, I was looking for a number, but that makes sense, reading between the lines to see what layers were involved….. I'll just let it be, then…. And I'll have my surgery and keep my fingers crossed for clear margins… π Thanks again for your help π
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- July 8, 2013 at 7:16 pm
They do say epidermal AND dermal involvement from the biopsy… I guess I just dont know what to look for, I was looking for a number, but that makes sense, reading between the lines to see what layers were involved….. I'll just let it be, then…. And I'll have my surgery and keep my fingers crossed for clear margins… π Thanks again for your help π
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