› Forums › General Melanoma Community › Weird lab results
- This topic has 21 replies, 4 voices, and was last updated 9 years, 9 months ago by
Janner.
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- August 9, 2014 at 3:20 pm
Hello all,
I have some weird lab results, and I was hoping you might help me figure out if my anxiety has basis in reality.
I'll try and make it short! Please feel free to skim!
WLE / SLNB on 7/10 for a .81 lesion, mitotic rate 1, Clark's IV. Surgery went beautifully, easy recovery. Surgeon went on vacation for 3 weeks.
Follow up visit with PA on 7/15 who told me my node was "trace positive and I needed brain can, etc. i freakes iut. Got a call 6 hours later that another stain had been tun, and the node was actually negative. This report came from the Gottlieb Medical Center, which is part of the Loyola complex in Chicago.
I requested a second opinion from the melanoma expert in the Loyola lab. Her report came back that the node was negative.
I cannot (CANNOT) shake the idea that my node was positive.
I asked the surgical oncologist if there would be any benefit to running any scans. He said the scans would be mathmatically more likely to turn up false positives at this point, leading to unnecessary biopsies than they would be to find "real" melanoma.
He has sent me for an appointment with Dr. Joe Clark on 9/2. Dr. Clark has an excellent reputation, and I have confidence in him, although I haven't met him.
Can anybody give me any guidance as to what I should be hoping happens next? I can't shake the idea that I need more information, but I recognize the possibility that this is nothing more than anxiety on my part.
If I DO have active disease, I want to be treated by Dr. Joe Clark, but right now I'm a little uncertain about my choice.
Thoughts?
Thank you!
Elaine
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- August 9, 2014 at 3:21 pm
Haha! That weird social media bar crept up in my post and caused me to make some weird typos in that post. Sorry!
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- August 9, 2014 at 9:31 pm
That would scare me too..I'm still new to all this but i believe i'd need to have scans just in case..You can go from stage 2 to stage 4 in a matter of a few months..Everyone's case is different and if your gut is telling you something then i'd listen to it..Good luck
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- August 9, 2014 at 9:31 pm
That would scare me too..I'm still new to all this but i believe i'd need to have scans just in case..You can go from stage 2 to stage 4 in a matter of a few months..Everyone's case is different and if your gut is telling you something then i'd listen to it..Good luck
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- August 9, 2014 at 9:31 pm
That would scare me too..I'm still new to all this but i believe i'd need to have scans just in case..You can go from stage 2 to stage 4 in a matter of a few months..Everyone's case is different and if your gut is telling you something then i'd listen to it..Good luck
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- August 9, 2014 at 11:10 pm
Hey Elaine,
all things melanoma can certainly be nerve wracking! I am not personally familiar with Dr. Clark…not that that matters…but you need to be sure that he is a melanoma specialist. If he is…great! See what he has to say. Be sure your slides are available for HIM, or his pathologist, to review. That way he can give his opinion and I would probably go with that!
Wishing you my best, celeste
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- August 9, 2014 at 11:10 pm
Hey Elaine,
all things melanoma can certainly be nerve wracking! I am not personally familiar with Dr. Clark…not that that matters…but you need to be sure that he is a melanoma specialist. If he is…great! See what he has to say. Be sure your slides are available for HIM, or his pathologist, to review. That way he can give his opinion and I would probably go with that!
Wishing you my best, celeste
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- August 9, 2014 at 11:10 pm
Hey Elaine,
all things melanoma can certainly be nerve wracking! I am not personally familiar with Dr. Clark…not that that matters…but you need to be sure that he is a melanoma specialist. If he is…great! See what he has to say. Be sure your slides are available for HIM, or his pathologist, to review. That way he can give his opinion and I would probably go with that!
Wishing you my best, celeste
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- August 10, 2014 at 12:30 am
With negative nodes, there isn't much left to do. Insurance most likely wouldn't pay for scans for someone stage IB (which you are). There is no "treatment" as such. No one is going to suggest you take Interferon or anything like that. You've already had the second opinion on the lymph nodes. You can ask for another, but that would likely come out of your pocket. It's hard to learn to live with melanoma. The first year is the worst. My first stage IB melanoma was 22 years ago and my last one (quite similar your yours (.88mm)) was removed 13 years ago. I'm still here, still stage IB. Go and meet Dr. Clark, but honestly there isn't "something that is going to happen next". What do you really expect Dr. Clark to do for you? He's an oncologist and treats active disease. You don't have active disease. So he can palpate your lymph nodes and he can look at your skin, but that's realistically all he has to offer. Scans do not pick up microscopic disease, and again are more likely to show false positives for you at this point. What you are struggling with is the same as all stage I and stage II warriors. Surgery is it. Everything else just doesn't really apply and there is nothing we can do other than learn to live with uncertainty.
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- August 10, 2014 at 12:30 am
With negative nodes, there isn't much left to do. Insurance most likely wouldn't pay for scans for someone stage IB (which you are). There is no "treatment" as such. No one is going to suggest you take Interferon or anything like that. You've already had the second opinion on the lymph nodes. You can ask for another, but that would likely come out of your pocket. It's hard to learn to live with melanoma. The first year is the worst. My first stage IB melanoma was 22 years ago and my last one (quite similar your yours (.88mm)) was removed 13 years ago. I'm still here, still stage IB. Go and meet Dr. Clark, but honestly there isn't "something that is going to happen next". What do you really expect Dr. Clark to do for you? He's an oncologist and treats active disease. You don't have active disease. So he can palpate your lymph nodes and he can look at your skin, but that's realistically all he has to offer. Scans do not pick up microscopic disease, and again are more likely to show false positives for you at this point. What you are struggling with is the same as all stage I and stage II warriors. Surgery is it. Everything else just doesn't really apply and there is nothing we can do other than learn to live with uncertainty.
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- August 10, 2014 at 12:30 am
With negative nodes, there isn't much left to do. Insurance most likely wouldn't pay for scans for someone stage IB (which you are). There is no "treatment" as such. No one is going to suggest you take Interferon or anything like that. You've already had the second opinion on the lymph nodes. You can ask for another, but that would likely come out of your pocket. It's hard to learn to live with melanoma. The first year is the worst. My first stage IB melanoma was 22 years ago and my last one (quite similar your yours (.88mm)) was removed 13 years ago. I'm still here, still stage IB. Go and meet Dr. Clark, but honestly there isn't "something that is going to happen next". What do you really expect Dr. Clark to do for you? He's an oncologist and treats active disease. You don't have active disease. So he can palpate your lymph nodes and he can look at your skin, but that's realistically all he has to offer. Scans do not pick up microscopic disease, and again are more likely to show false positives for you at this point. What you are struggling with is the same as all stage I and stage II warriors. Surgery is it. Everything else just doesn't really apply and there is nothing we can do other than learn to live with uncertainty.
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- August 10, 2014 at 12:47 am
I would stil get a final commentary from your upcoming consult…but after that….Have to say…I agree with what Janner. Melanoma sucks. She's been dealing with this world for 22 years. I've been living it for 11. So….what does that mean? Not much…or everything. It's pretty much like what I said to another writer on this forum. One of my favorite quotes is from Cloud Atlas and goes something like… I aint the first to go without know'n…and I ain't the last.
I realize it is not easy to let the worries go. But, what are the choices? Use your time filled with anxiety and worry? Or…move forward…living as large as you can…as best you can. I'm betting you are a girl who will choose the latter! Hang in there. Get the best info you can….then MOVE forward!!!
love and hugs, celeste
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- August 10, 2014 at 12:47 am
I would stil get a final commentary from your upcoming consult…but after that….Have to say…I agree with what Janner. Melanoma sucks. She's been dealing with this world for 22 years. I've been living it for 11. So….what does that mean? Not much…or everything. It's pretty much like what I said to another writer on this forum. One of my favorite quotes is from Cloud Atlas and goes something like… I aint the first to go without know'n…and I ain't the last.
I realize it is not easy to let the worries go. But, what are the choices? Use your time filled with anxiety and worry? Or…move forward…living as large as you can…as best you can. I'm betting you are a girl who will choose the latter! Hang in there. Get the best info you can….then MOVE forward!!!
love and hugs, celeste
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- August 10, 2014 at 2:51 am
Thank you for your replies. I really do appreciate the "real talk" and reminders to let go of anxiety.
Janner, I don't really want Dr. Clark to do anything for me in the way of treatment, but I guess I would be grateful if there was a way to be sure that I DON'T in fact have active disease.
I wish I never found out there was a discrepancy with my lab results. It would be easier if I had never heard that the "trace positive" results had ever existed.
I suppose I'll just have to live with a little extra uncertainty.
I appreciate all of your help with the thought process. It's so good of you who have been dealing with melanoma for so long to share your knowledge base.
Best,
Elaine
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- August 10, 2014 at 2:51 am
Thank you for your replies. I really do appreciate the "real talk" and reminders to let go of anxiety.
Janner, I don't really want Dr. Clark to do anything for me in the way of treatment, but I guess I would be grateful if there was a way to be sure that I DON'T in fact have active disease.
I wish I never found out there was a discrepancy with my lab results. It would be easier if I had never heard that the "trace positive" results had ever existed.
I suppose I'll just have to live with a little extra uncertainty.
I appreciate all of your help with the thought process. It's so good of you who have been dealing with melanoma for so long to share your knowledge base.
Best,
Elaine
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- August 10, 2014 at 3:32 am
"if there was a way to be sure that I DON'T in fact have active disease."
That's what everyone wants, but right now – it doesn't exist. I agree on the lab results – it put a little more doubt in the equation. And if it does help, get another opinion. But past that, you get to join the ranks of those early stages who are NED and hope they stay that way forever. But no scan or blood test will guarantee that you don't have active disease now. Technology just isn't there yet. It DOES get easier with time dealing with uncertainty. Hang in there! 🙂
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- August 10, 2014 at 3:32 am
"if there was a way to be sure that I DON'T in fact have active disease."
That's what everyone wants, but right now – it doesn't exist. I agree on the lab results – it put a little more doubt in the equation. And if it does help, get another opinion. But past that, you get to join the ranks of those early stages who are NED and hope they stay that way forever. But no scan or blood test will guarantee that you don't have active disease now. Technology just isn't there yet. It DOES get easier with time dealing with uncertainty. Hang in there! 🙂
-
- August 10, 2014 at 3:32 am
"if there was a way to be sure that I DON'T in fact have active disease."
That's what everyone wants, but right now – it doesn't exist. I agree on the lab results – it put a little more doubt in the equation. And if it does help, get another opinion. But past that, you get to join the ranks of those early stages who are NED and hope they stay that way forever. But no scan or blood test will guarantee that you don't have active disease now. Technology just isn't there yet. It DOES get easier with time dealing with uncertainty. Hang in there! 🙂
-
- August 10, 2014 at 2:51 am
Thank you for your replies. I really do appreciate the "real talk" and reminders to let go of anxiety.
Janner, I don't really want Dr. Clark to do anything for me in the way of treatment, but I guess I would be grateful if there was a way to be sure that I DON'T in fact have active disease.
I wish I never found out there was a discrepancy with my lab results. It would be easier if I had never heard that the "trace positive" results had ever existed.
I suppose I'll just have to live with a little extra uncertainty.
I appreciate all of your help with the thought process. It's so good of you who have been dealing with melanoma for so long to share your knowledge base.
Best,
Elaine
-
- August 10, 2014 at 12:47 am
I would stil get a final commentary from your upcoming consult…but after that….Have to say…I agree with what Janner. Melanoma sucks. She's been dealing with this world for 22 years. I've been living it for 11. So….what does that mean? Not much…or everything. It's pretty much like what I said to another writer on this forum. One of my favorite quotes is from Cloud Atlas and goes something like… I aint the first to go without know'n…and I ain't the last.
I realize it is not easy to let the worries go. But, what are the choices? Use your time filled with anxiety and worry? Or…move forward…living as large as you can…as best you can. I'm betting you are a girl who will choose the latter! Hang in there. Get the best info you can….then MOVE forward!!!
love and hugs, celeste
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