› Forums › General Melanoma Community › Great News:)
- This topic has 30 replies, 5 voices, and was last updated 13 years, 10 months ago by
alicia.
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- January 25, 2011 at 2:52 pm
Hello everyone I just got back from Vandy a few days ago and recieved pretty good news from my path results. There was no evidence of melanoma in my lymph nodes however the melanoma tumor was thicker than previously thought. there was 2.3mm of residual melanoma on the skin they excised but got clear margins. I guess one the questions i forgot to ask my dr was do they add the 1mm of melanoma they removed with the biopsy to the 2.3mm to get the total depth or how does that work. He said this was a thick melanoma and puts me at a stage 2 for this primary.
Hello everyone I just got back from Vandy a few days ago and recieved pretty good news from my path results. There was no evidence of melanoma in my lymph nodes however the melanoma tumor was thicker than previously thought. there was 2.3mm of residual melanoma on the skin they excised but got clear margins. I guess one the questions i forgot to ask my dr was do they add the 1mm of melanoma they removed with the biopsy to the 2.3mm to get the total depth or how does that work. He said this was a thick melanoma and puts me at a stage 2 for this primary. This is my third primary melanoma BTW:( The first mel I had 4 yrs ago was 2.3mm at least and spread to one of my lymph nodes. and then in July of this year I had a thin 0.59mm melanoma clarks level II only treated with wide excision. I do have another question about my SNB this time. The first surgeon I was referred to said that since I have already had surgery to my left groin to remove some lymph nodes (due to first mel being on left hip and +SNB Lt groin) that lymphatics had been disrupted and a CLND needed to be done because it would be impossible to find the SN by doing the lymphoschintigraphy or blue dye test. Well I then get referred to Vandy because my surgeon feels it would be best I see a mel specialist to do my surgery since i'm only 28 yrs old and this is my 3rd primary and the surgery could be complicated since scar tissue in left groin etc etc. Well the mel surgeon at Vandy says no we will do SNB only and not CLND so day of surgery we do the injection and the nodes light up in both groins so he removed 3 in left groin and 1 in right groin. While i am so excited that all came back clear of melanoma I still worry at times if he could have missed the true SN as the first surgeon said there is no way of finding it by doing the dye test cause lymphatics have been disrupted. Sorry to ramble when most of you are dealing with way more serious issues than me. I just dont know who to talk to about these details and you all have experienced this first hand and truly understand what this feels like. I go see my oncologist here at home in a couple of weeks. The mel surgeon said he wouldn't recommend interferon since i've already been there done that but he thought a PET scan needs to be done since I need to be followed as a stage 3 patient and this melanoma was pretty thick. He also mentioned doing US surveilence of nodes and do FNA if there are any suspicious areas. Thank you again for your time.
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- January 25, 2011 at 3:48 pm
No. You don't add the biopsy depth to the "residual depth". When they biopsy something, they slice it into thin samples. They do something similar with the WLE tissue. However, you don't know which biopsy sample lines up with the WLE sample. There is no way to match up the tissue, so you can't add the two values. You might be matching the deepest depths of both, when the residual melanoma was actually on a very thin portion of the original biopsy. You have an original primary of XX depth but YY residual was found in the WLE. I would insist on at least a punch biopsy in the future. In general, they tend to get the entire depth and you wouldn't have the "residual melanoma" issue.
As for the SNB results, I wouldn't spend much time worrying. If the lymphatic drainage was that screwed up, it likely would have gone nowhere instead of into 4 nodes. There are people who've had the dye/radioactive bit just stay at the primary site and not travel anywhere. The fact that yours drained to specific nodes is a good thing. It doesn't change your staging and you know to watch the lymph nodes for changes, etc. SNB's aren't a 100% guarantee and you are already stage III. It sounds like extra vigilance is a good thing. PET and US monitoring sound reasonable. Remember, though, that FNA is not 100%. If there is only a small amount of melanoma in a node, you have to rely on the doc hitting that pocket of melanoma to get a positive results. If the FNA comes back as melanoma, it's 100%. But if it comes back negative, all that means is the small section they sampled is negative – not the entire node.
Best wishes from another 3 primary warrior!
Janner
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- January 25, 2011 at 7:32 pm
Thanks so much Janner for the information as this can be very confusing. I called the surgeon and he said he is going by the depth of 2.3mm for this primary since that is what was on the residual skin. He said its a stage II but like you said since I"ve had a prev stage 3 he called mine a stage 3 (NED) with mult primaries st 1 and st 2. Again thanks so much for the information about the nodes and depth. That makes me feel much better:)
Alicia
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- January 25, 2011 at 9:36 pm
Dear Alicia,
Sorry about your recurrences….nobody ever wants to have that happen. I am worried for you that maybe you are "minimizing" what stage you are…your first melanoma and positive SNB made you a stage 3a (please fellow MPIPers correct me if I am wrong). You have now had two other primaries from what I am reading, meaning they are not similar in analysis to the first one?? This still makes you stage 3a…..and you need to "THINK" like a stage 3a….not a stage 2……meaning there are other treatments/trials you may want to consider. Not meaning to sound like a doomsday melanoma patient, but I would hate to see you NOT get the treatments or participate in trials because your oncologists havent been clear or you have wishful thinking. AGAIN, fellow MPIPers if I have this wrong please step in.
HUGS to you and good luck!!!
Vermont_Donna
Stage 3a, currently doing IPI
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- January 25, 2011 at 9:36 pm
Dear Alicia,
Sorry about your recurrences….nobody ever wants to have that happen. I am worried for you that maybe you are "minimizing" what stage you are…your first melanoma and positive SNB made you a stage 3a (please fellow MPIPers correct me if I am wrong). You have now had two other primaries from what I am reading, meaning they are not similar in analysis to the first one?? This still makes you stage 3a…..and you need to "THINK" like a stage 3a….not a stage 2……meaning there are other treatments/trials you may want to consider. Not meaning to sound like a doomsday melanoma patient, but I would hate to see you NOT get the treatments or participate in trials because your oncologists havent been clear or you have wishful thinking. AGAIN, fellow MPIPers if I have this wrong please step in.
HUGS to you and good luck!!!
Vermont_Donna
Stage 3a, currently doing IPI
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- January 26, 2011 at 12:57 am
HI,
Thank you Donna I was thinking the same thing – my first thought when reading this note was that you arent stage 2 you are stage 3 but didnt know if I should state that to you. I am no expert but I thought once a stage 3 always a stage 3. I am sorry I am not helpful as far as what treatment. I hope others on this site can help you figure out the best treatment for you. Please keep us informed.
laurie
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- January 26, 2011 at 12:57 am
HI,
Thank you Donna I was thinking the same thing – my first thought when reading this note was that you arent stage 2 you are stage 3 but didnt know if I should state that to you. I am no expert but I thought once a stage 3 always a stage 3. I am sorry I am not helpful as far as what treatment. I hope others on this site can help you figure out the best treatment for you. Please keep us informed.
laurie
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- January 26, 2011 at 1:01 am
You should check out http://clinicaltrials.gov/ to search for trials you might qualify for. Since you've been stage 3A for some time now, that might actually disqualify you from some trials. Some have limitations on times since surgery, etc. There aren't a lot of trials for stage II disease relating to your most recent diagnosis and being Stage III NED might disqualify you from those, too. But the best way to know what's out there is to do some legwork and search for yourself.
Best wishes,
Janner
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- January 26, 2011 at 1:16 am
Alicia,
Glad you took my email in the spirit of looking out for you, not spoiling your "good" news, as I dont think you can look at it that way. Please read up on staging and primaries and what makes stage 3a what it is, stage 3b, etc. You can never go back down a stage once you are staged ie, you were 3a from the first melanoma and positive SNB. Now if your "new" primaries are "OUTSIDE" of the nodal basin some look at that as stage 4, others look for organ/brain involvement, etc…there ARE specific criteria that are used. I dont recall you saying where all your primaries are located. And a new primary is a melanoma that is not the same cells as the previous ones, and can be more benign than your first. Its that the positive SNB makes you 3a. That all being said, I do not know about what treatments are available to you, as Janner said, you were dx stage 3a some time ago. Interferon needs to start within 56 days of resection. There is leukine, radiation, and perhaps other things. Ipilimumab is in a clinical trial right now, perhaps that, but you have to "fail" other treatments sometimes to qualify for some treatments, etc. Sorry I am probably clear as mud, its late for me and I am tired but I wanted to respond again.
Dont lose sleep but as Janner said too, research, read, look through this board archives and the information on staging, etc and talk to a MELANOMA oncologist!!!!
Hugs again!!!!
Vermont_Donna, stage 3a
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- January 26, 2011 at 1:33 am
Thank you all so much for the information. Yes it's been 4 yrs since the stage 3a diagnosis and I did interferon at that time. I talk more about that on my profile page. Then I had these other 2 primaries with the most recent one being a stage 2. Yes I realize i have to think like a stage 3 patient cause the mel has traveled to my sentinel node before and I'm just hoping they didn't miss something this time as I realize the SNB isn't 100%. I researched alot 4 yrs ago but I was so sick of this stuff that after everything seemed to get better I just got on with life. I'm 28 have 2 babies and a husband so I really need to keep an eye on things and be as informed as possible on this wicked stuff.
Janner the surg oncologist did mention that I would probably be exempt from a lot of clinical trials because i've already done interferon and due to the mult primarioes. He also said he thinks I have a genetic disorder but didn't think that it would be necessary for me to be tested as he felt the information wouldnt be beneficial at this time. He said unless your stage 4 theres not a lot we can do except for close surveilence because i've already done interferon and had bad toxicity from it. He did also mention that I shouldnt get pregnant anymore as my first melanoma occured during pregnancy and these other two occured after the birth of my second child. He said while he doesn't believe pregnancy causes melanoma, he does believe it may cause it to spread if there are some dormant cells lingering. again Thank you all so much!!!! You are very helpful and I appreciate your advice and wisdom:)
Alicia
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- January 26, 2011 at 1:55 pm
Dear Alicia,
I just wanted to say again that I am SO SORRY about all of this, about another re-occurence, just when you are happy and lovingly raising a family…babies!!! And to have your doctor say never get pregnant again, heartbreaking news to hear, even if you werent thinking of having more, still you want that to be a choice you and your husband make, not a choice a doctor advises you against. My heart goes out to you. Chin up tough, we will be with you here every step of the way!
Cyber hugs,
Vermont_Donna
stage 3a, currently doing IPI
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- January 26, 2011 at 1:55 pm
Dear Alicia,
I just wanted to say again that I am SO SORRY about all of this, about another re-occurence, just when you are happy and lovingly raising a family…babies!!! And to have your doctor say never get pregnant again, heartbreaking news to hear, even if you werent thinking of having more, still you want that to be a choice you and your husband make, not a choice a doctor advises you against. My heart goes out to you. Chin up tough, we will be with you here every step of the way!
Cyber hugs,
Vermont_Donna
stage 3a, currently doing IPI
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- January 26, 2011 at 1:33 am
Thank you all so much for the information. Yes it's been 4 yrs since the stage 3a diagnosis and I did interferon at that time. I talk more about that on my profile page. Then I had these other 2 primaries with the most recent one being a stage 2. Yes I realize i have to think like a stage 3 patient cause the mel has traveled to my sentinel node before and I'm just hoping they didn't miss something this time as I realize the SNB isn't 100%. I researched alot 4 yrs ago but I was so sick of this stuff that after everything seemed to get better I just got on with life. I'm 28 have 2 babies and a husband so I really need to keep an eye on things and be as informed as possible on this wicked stuff.
Janner the surg oncologist did mention that I would probably be exempt from a lot of clinical trials because i've already done interferon and due to the mult primarioes. He also said he thinks I have a genetic disorder but didn't think that it would be necessary for me to be tested as he felt the information wouldnt be beneficial at this time. He said unless your stage 4 theres not a lot we can do except for close surveilence because i've already done interferon and had bad toxicity from it. He did also mention that I shouldnt get pregnant anymore as my first melanoma occured during pregnancy and these other two occured after the birth of my second child. He said while he doesn't believe pregnancy causes melanoma, he does believe it may cause it to spread if there are some dormant cells lingering. again Thank you all so much!!!! You are very helpful and I appreciate your advice and wisdom:)
Alicia
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- January 26, 2011 at 2:10 am
Donna, just a clarification as you seem to imply that a new primary could make Alicia stage IV. I don't want anyone to get that impression. A new primary is a new and UNRELATED occurrence of melanoma. It wouldn't make Alicia stage IV. If she's given a Breslow depth, etc., it's a primary not a recurrence. Nodal basins mean nothing in that case for staging . New primaries only change staging if they are "worse" than existing staging.
Here's a link to some staging guidelines:
http://www.cancer.org/Cancer/SkinCancer-Melanoma/DetailedGuide/melanoma-skin-cancer-staging
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- January 26, 2011 at 1:48 pm
Yes Janner, you are right…thanks so much for clarifying this very important factor.!!
Vermont_Donna
stage3a
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- January 26, 2011 at 1:48 pm
Yes Janner, you are right…thanks so much for clarifying this very important factor.!!
Vermont_Donna
stage3a
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- January 26, 2011 at 2:10 am
Donna, just a clarification as you seem to imply that a new primary could make Alicia stage IV. I don't want anyone to get that impression. A new primary is a new and UNRELATED occurrence of melanoma. It wouldn't make Alicia stage IV. If she's given a Breslow depth, etc., it's a primary not a recurrence. Nodal basins mean nothing in that case for staging . New primaries only change staging if they are "worse" than existing staging.
Here's a link to some staging guidelines:
http://www.cancer.org/Cancer/SkinCancer-Melanoma/DetailedGuide/melanoma-skin-cancer-staging
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- January 26, 2011 at 1:16 am
Alicia,
Glad you took my email in the spirit of looking out for you, not spoiling your "good" news, as I dont think you can look at it that way. Please read up on staging and primaries and what makes stage 3a what it is, stage 3b, etc. You can never go back down a stage once you are staged ie, you were 3a from the first melanoma and positive SNB. Now if your "new" primaries are "OUTSIDE" of the nodal basin some look at that as stage 4, others look for organ/brain involvement, etc…there ARE specific criteria that are used. I dont recall you saying where all your primaries are located. And a new primary is a melanoma that is not the same cells as the previous ones, and can be more benign than your first. Its that the positive SNB makes you 3a. That all being said, I do not know about what treatments are available to you, as Janner said, you were dx stage 3a some time ago. Interferon needs to start within 56 days of resection. There is leukine, radiation, and perhaps other things. Ipilimumab is in a clinical trial right now, perhaps that, but you have to "fail" other treatments sometimes to qualify for some treatments, etc. Sorry I am probably clear as mud, its late for me and I am tired but I wanted to respond again.
Dont lose sleep but as Janner said too, research, read, look through this board archives and the information on staging, etc and talk to a MELANOMA oncologist!!!!
Hugs again!!!!
Vermont_Donna, stage 3a
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- January 26, 2011 at 1:01 am
You should check out http://clinicaltrials.gov/ to search for trials you might qualify for. Since you've been stage 3A for some time now, that might actually disqualify you from some trials. Some have limitations on times since surgery, etc. There aren't a lot of trials for stage II disease relating to your most recent diagnosis and being Stage III NED might disqualify you from those, too. But the best way to know what's out there is to do some legwork and search for yourself.
Best wishes,
Janner
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- January 25, 2011 at 7:32 pm
Thanks so much Janner for the information as this can be very confusing. I called the surgeon and he said he is going by the depth of 2.3mm for this primary since that is what was on the residual skin. He said its a stage II but like you said since I"ve had a prev stage 3 he called mine a stage 3 (NED) with mult primaries st 1 and st 2. Again thanks so much for the information about the nodes and depth. That makes me feel much better:)
Alicia
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- January 25, 2011 at 3:48 pm
No. You don't add the biopsy depth to the "residual depth". When they biopsy something, they slice it into thin samples. They do something similar with the WLE tissue. However, you don't know which biopsy sample lines up with the WLE sample. There is no way to match up the tissue, so you can't add the two values. You might be matching the deepest depths of both, when the residual melanoma was actually on a very thin portion of the original biopsy. You have an original primary of XX depth but YY residual was found in the WLE. I would insist on at least a punch biopsy in the future. In general, they tend to get the entire depth and you wouldn't have the "residual melanoma" issue.
As for the SNB results, I wouldn't spend much time worrying. If the lymphatic drainage was that screwed up, it likely would have gone nowhere instead of into 4 nodes. There are people who've had the dye/radioactive bit just stay at the primary site and not travel anywhere. The fact that yours drained to specific nodes is a good thing. It doesn't change your staging and you know to watch the lymph nodes for changes, etc. SNB's aren't a 100% guarantee and you are already stage III. It sounds like extra vigilance is a good thing. PET and US monitoring sound reasonable. Remember, though, that FNA is not 100%. If there is only a small amount of melanoma in a node, you have to rely on the doc hitting that pocket of melanoma to get a positive results. If the FNA comes back as melanoma, it's 100%. But if it comes back negative, all that means is the small section they sampled is negative – not the entire node.
Best wishes from another 3 primary warrior!
Janner
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- January 27, 2011 at 11:29 pm
I know this is a bit odd to post but I don't know how else to do this. I am pregnant and seeing and then reading your profile and you having had a super cute little guy after having melanoma…..may I ask? What did you have to do while pregnant? What recommendations did the docs give you? I am just looking for any advice on it. Thanks!
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- January 30, 2011 at 10:35 pm
Hi Ranisa, my stage 3 melanoma developed during my first pregnancy but wasnt biopsied until after my daughter was born. After that I had WLE, SNB which came back + for melanoma in the Sentinel node. I then did the interferon treatment. My general oncologist at that time told me to make sure I didn't become pregnant for at least 3 yrs after treatment but I had another oncologist tell me since my first melanoma developed during pregnancy that it may not be wise to get pregnant again. So my husband and I were very cautious about preventing pregnancy for those first 3 yrs and without trying became pregnant with our son Andrew. I must say I was scared about the return of melanoma. and after his birth I developed 2 melanoma primaries with the most recent one being a 2.3mm or greater melanoma (stage 2). I was referred to Vanderbilts Melanoma center and the surgical oncologist there told me to definitely not get pregnant again. He said while this may not be a problem for most people he feels that you must treat each patient according to their history. Since during both pregnancies I developed melanoma's he said to not have any more children however this may not be the case for everyones situation because melanoma acts differently in different environments and theres not a lot of studies showing melanoma and pregnancy are related.
During my pregnancy since I was Stage 3 with no evidence of disease my oncologist just checked my node basins, I went to the dermatologist and had my skin examined but really there is nothing else you could do. I wouldnt have scans due to the radiation risk to the baby plus I had no symptoms or skin lesions at the time. Toward the end of my pregnancy I did develop a PUPP rash and had to be put of a hard core steroid treatment which some doctors think can cause cancer to spread if there are dormant cells lingering. Who knows??? I would just say be very aware of your skin and its changes but also try to enjoy your pregnancy:) Fear is the worse thing in the world, even though it is inevitable we must not let it in to stay for long or it can eat away at any joy we have. Everytime the Devil tries to get me down emotionally about all this, God reminds me of how blessed I truly am. Don't ever hesitate to ask me a question if I can be of any help I will do my best.
God bless you,
Alicia stage 3a since 2006 with 3 primaries
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- January 30, 2011 at 10:35 pm
Hi Ranisa, my stage 3 melanoma developed during my first pregnancy but wasnt biopsied until after my daughter was born. After that I had WLE, SNB which came back + for melanoma in the Sentinel node. I then did the interferon treatment. My general oncologist at that time told me to make sure I didn't become pregnant for at least 3 yrs after treatment but I had another oncologist tell me since my first melanoma developed during pregnancy that it may not be wise to get pregnant again. So my husband and I were very cautious about preventing pregnancy for those first 3 yrs and without trying became pregnant with our son Andrew. I must say I was scared about the return of melanoma. and after his birth I developed 2 melanoma primaries with the most recent one being a 2.3mm or greater melanoma (stage 2). I was referred to Vanderbilts Melanoma center and the surgical oncologist there told me to definitely not get pregnant again. He said while this may not be a problem for most people he feels that you must treat each patient according to their history. Since during both pregnancies I developed melanoma's he said to not have any more children however this may not be the case for everyones situation because melanoma acts differently in different environments and theres not a lot of studies showing melanoma and pregnancy are related.
During my pregnancy since I was Stage 3 with no evidence of disease my oncologist just checked my node basins, I went to the dermatologist and had my skin examined but really there is nothing else you could do. I wouldnt have scans due to the radiation risk to the baby plus I had no symptoms or skin lesions at the time. Toward the end of my pregnancy I did develop a PUPP rash and had to be put of a hard core steroid treatment which some doctors think can cause cancer to spread if there are dormant cells lingering. Who knows??? I would just say be very aware of your skin and its changes but also try to enjoy your pregnancy:) Fear is the worse thing in the world, even though it is inevitable we must not let it in to stay for long or it can eat away at any joy we have. Everytime the Devil tries to get me down emotionally about all this, God reminds me of how blessed I truly am. Don't ever hesitate to ask me a question if I can be of any help I will do my best.
God bless you,
Alicia stage 3a since 2006 with 3 primaries
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- January 27, 2011 at 11:29 pm
I know this is a bit odd to post but I don't know how else to do this. I am pregnant and seeing and then reading your profile and you having had a super cute little guy after having melanoma…..may I ask? What did you have to do while pregnant? What recommendations did the docs give you? I am just looking for any advice on it. Thanks!
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- January 27, 2011 at 11:29 pm
I know this is a bit odd to post but I don't know how else to do this. I am pregnant and seeing and then reading your profile and you having had a super cute little guy after having melanoma…..may I ask? What did you have to do while pregnant? What recommendations did the docs give you? I am just looking for any advice on it. Thanks!
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- January 27, 2011 at 11:29 pm
I know this is a bit odd to post but I don't know how else to do this. I am pregnant and seeing and then reading your profile and you having had a super cute little guy after having melanoma…..may I ask? What did you have to do while pregnant? What recommendations did the docs give you? I am just looking for any advice on it. Thanks!
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