› Forums › General Melanoma Community › Looking for advise
- This topic has 42 replies, 3 voices, and was last updated 10 years, 3 months ago by
Mhardes.
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- May 14, 2015 at 2:07 am
Good day, I have had a rough couple weeks and it was capped off today – just looking for some thoughts. I have had two basil cells removed in the last few years. I usually go once a year to get checked out. During my lasycheckup (1 1/2 yrs ago) I had mr dermatologist check a mark on the back of my leg. Hindsight, I should have gotten a biopsy. He said it was fine and I forgot about it. About 2 weeks ago, I decided to go and get checked ( my wife had wanted to get checked out and it reminded me). The doctor saw the mark on my leg and said that it had changed enough to get a sample. He said he didn't think it was melanoma..he had never said that so I was a little concerned. I waited a few days and it was driving me crazy so I made an aapointment to speak to him. He basically said don't worry ,,sure it's nothing and you'll co e in, we'll get it out and move on. Now today,,got the call.results are in but ..he wants to send the sample to Harvard for a second opinion before talking to me….another week. I said ok..but after three more calls to the doctors office, I said that I would like the doctor to cover the first test results..he can still get a second,,,but the first test must show something. She said that he was not comfortablele covering without a second opinion. Again, I asked for my records ..I am going tomorrow to meet with him. I asked the nurse..was it stage 5… She said they didn't know what it was but that it wasn't stage 5,4 or maybe not even three. She also said I caught it early and that it wasn't in lymp nodes or had matacised..(how would she know)…I a very concerned and I am going tomorrow. Any thoughts..I always go worst case scenario…thanks
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- May 14, 2015 at 1:26 pm
First off, pre- worry never helped anyone. Second, there is no staging on path reports and stage 5 doesn't exist. Clark's Level is on path reports and it shows the level of skin invaded. However, it isn't that reliable and isn't used in staging anymore. The value you would be looking for is Breslow Depth. That is the most important factor and it can be an indicator of many things.
Now, if you are getting a second opinion from an expert, be aware that things could easily change significantly. It's rare to have two opinions match and often times the expert doesn't see things as bad as the initial doc. They see lots of samples. So….speculation is worthless and second guessing what an expert will report is a waste of time. You just have to wait. It sucks, we all have been there but imagining the worst really does no one any good.
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- May 14, 2015 at 2:24 pm
Thank you, I was just concerned that the doctor wouldn't share the original diagnosis with me without a second opinion. Then I was wondering if the nurse would tell me it was caught early (what ever it is) just to make me feel better. You are right it does no good to worry, but my worst case scenario thought process has always helped me esp. In my work. It allows me to plan for the worst and if it doesn't happen it doesn't happen. I know it doesn't serve me well in this instance, but very difficult to change overnight. Do you think it's wrong to meet with the doctor today, to have him cover the first test results? To me, it represents a worse case and can only get better from there. I am the type of person that likes to know what they are up against, so I can beat it. I do appreciate your comments, and the last two days have provided me with self reflection, I have never had.
ty
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- May 14, 2015 at 4:29 pm
Doctors send samples for second opinions all the time. Pathology is an art as well as a science and not everything is cut and dried.
I, personally would not have made a special visit to see my doc without both reports. You want to ask questions when you have the other final report. Patience is needed.
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- May 14, 2015 at 5:14 pm
I apologize for my continued whining (thats what it feels like)…I am very analytical and my mind travels when people tell me things..when the nurse said it wasnt in my lymph nodes or hadn’t metasicised ..but the docotr wasnt comfortable without second opinion…I dont understand that..I guess I just want to see what we do know….the nurse said she is 100% about those comments…I guess I just need some clarity..what are we up against..how long do we need to wait…etc…once again…feel like I am whining…but really scared… -
- May 14, 2015 at 5:28 pm
Depth implies certain assumptions and shallow depths mean extremely unlikely to be in the lymph nodes, therefore no metastasis. You are jumping the gun with not enough info. But it is best to have all opinions first, and multiple opinions is common especially in smaller labs or if the pathologist is not a dermatopathologist. Even then, some lesions have more cut and dried features and some are more open to interpretation. Even experienced derm paths have others looks at their slides.
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- May 14, 2015 at 6:38 pm
Folks.I really appreciate all of your input…I have an appointment in an hour..and I really wanted to go..just to at least see where we are at …part of me thinks it would make me feel better..to bat least know what he is thinking..and at least …I could get the depth…right..? I do agree that the second opinion is the right thing to do….and I am good with a final diagnosis at that point..just want to know what we do know… I guess thats what upsets me…not sure why its so important for me -
- May 14, 2015 at 6:38 pm
Folks.I really appreciate all of your input…I have an appointment in an hour..and I really wanted to go..just to at least see where we are at …part of me thinks it would make me feel better..to bat least know what he is thinking..and at least …I could get the depth…right..? I do agree that the second opinion is the right thing to do….and I am good with a final diagnosis at that point..just want to know what we do know… I guess thats what upsets me…not sure why its so important for me -
- May 14, 2015 at 6:38 pm
Folks.I really appreciate all of your input…I have an appointment in an hour..and I really wanted to go..just to at least see where we are at …part of me thinks it would make me feel better..to bat least know what he is thinking..and at least …I could get the depth…right..? I do agree that the second opinion is the right thing to do….and I am good with a final diagnosis at that point..just want to know what we do know… I guess thats what upsets me…not sure why its so important for me -
- May 14, 2015 at 5:28 pm
Depth implies certain assumptions and shallow depths mean extremely unlikely to be in the lymph nodes, therefore no metastasis. You are jumping the gun with not enough info. But it is best to have all opinions first, and multiple opinions is common especially in smaller labs or if the pathologist is not a dermatopathologist. Even then, some lesions have more cut and dried features and some are more open to interpretation. Even experienced derm paths have others looks at their slides.
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- May 14, 2015 at 5:28 pm
Depth implies certain assumptions and shallow depths mean extremely unlikely to be in the lymph nodes, therefore no metastasis. You are jumping the gun with not enough info. But it is best to have all opinions first, and multiple opinions is common especially in smaller labs or if the pathologist is not a dermatopathologist. Even then, some lesions have more cut and dried features and some are more open to interpretation. Even experienced derm paths have others looks at their slides.
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- May 14, 2015 at 5:14 pm
I apologize for my continued whining (thats what it feels like)…I am very analytical and my mind travels when people tell me things..when the nurse said it wasnt in my lymph nodes or hadn’t metasicised ..but the docotr wasnt comfortable without second opinion…I dont understand that..I guess I just want to see what we do know….the nurse said she is 100% about those comments…I guess I just need some clarity..what are we up against..how long do we need to wait…etc…once again…feel like I am whining…but really scared… -
- May 14, 2015 at 5:14 pm
I apologize for my continued whining (thats what it feels like)…I am very analytical and my mind travels when people tell me things..when the nurse said it wasnt in my lymph nodes or hadn’t metasicised ..but the docotr wasnt comfortable without second opinion…I dont understand that..I guess I just want to see what we do know….the nurse said she is 100% about those comments…I guess I just need some clarity..what are we up against..how long do we need to wait…etc…once again…feel like I am whining…but really scared… -
- May 14, 2015 at 4:29 pm
Doctors send samples for second opinions all the time. Pathology is an art as well as a science and not everything is cut and dried.
I, personally would not have made a special visit to see my doc without both reports. You want to ask questions when you have the other final report. Patience is needed.
-
- May 14, 2015 at 4:29 pm
Doctors send samples for second opinions all the time. Pathology is an art as well as a science and not everything is cut and dried.
I, personally would not have made a special visit to see my doc without both reports. You want to ask questions when you have the other final report. Patience is needed.
-
- May 14, 2015 at 2:24 pm
Thank you, I was just concerned that the doctor wouldn't share the original diagnosis with me without a second opinion. Then I was wondering if the nurse would tell me it was caught early (what ever it is) just to make me feel better. You are right it does no good to worry, but my worst case scenario thought process has always helped me esp. In my work. It allows me to plan for the worst and if it doesn't happen it doesn't happen. I know it doesn't serve me well in this instance, but very difficult to change overnight. Do you think it's wrong to meet with the doctor today, to have him cover the first test results? To me, it represents a worse case and can only get better from there. I am the type of person that likes to know what they are up against, so I can beat it. I do appreciate your comments, and the last two days have provided me with self reflection, I have never had.
ty
-
- May 14, 2015 at 2:24 pm
Thank you, I was just concerned that the doctor wouldn't share the original diagnosis with me without a second opinion. Then I was wondering if the nurse would tell me it was caught early (what ever it is) just to make me feel better. You are right it does no good to worry, but my worst case scenario thought process has always helped me esp. In my work. It allows me to plan for the worst and if it doesn't happen it doesn't happen. I know it doesn't serve me well in this instance, but very difficult to change overnight. Do you think it's wrong to meet with the doctor today, to have him cover the first test results? To me, it represents a worse case and can only get better from there. I am the type of person that likes to know what they are up against, so I can beat it. I do appreciate your comments, and the last two days have provided me with self reflection, I have never had.
ty
-
- May 14, 2015 at 1:26 pm
First off, pre- worry never helped anyone. Second, there is no staging on path reports and stage 5 doesn't exist. Clark's Level is on path reports and it shows the level of skin invaded. However, it isn't that reliable and isn't used in staging anymore. The value you would be looking for is Breslow Depth. That is the most important factor and it can be an indicator of many things.
Now, if you are getting a second opinion from an expert, be aware that things could easily change significantly. It's rare to have two opinions match and often times the expert doesn't see things as bad as the initial doc. They see lots of samples. So….speculation is worthless and second guessing what an expert will report is a waste of time. You just have to wait. It sucks, we all have been there but imagining the worst really does no one any good.
-
- May 14, 2015 at 1:26 pm
First off, pre- worry never helped anyone. Second, there is no staging on path reports and stage 5 doesn't exist. Clark's Level is on path reports and it shows the level of skin invaded. However, it isn't that reliable and isn't used in staging anymore. The value you would be looking for is Breslow Depth. That is the most important factor and it can be an indicator of many things.
Now, if you are getting a second opinion from an expert, be aware that things could easily change significantly. It's rare to have two opinions match and often times the expert doesn't see things as bad as the initial doc. They see lots of samples. So….speculation is worthless and second guessing what an expert will report is a waste of time. You just have to wait. It sucks, we all have been there but imagining the worst really does no one any good.
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- May 14, 2015 at 5:09 pm
I totally agree with janner… and for some extra peace of mind, my initial biopsy was sent to 3 pathologists before I even heard a word fromy dr. Just saying, multiple reads is totally normal.-
- May 15, 2015 at 1:29 am
I know a couple folks said to wait until the second opinion was in but I thought a conversation
With the doctor would at least make me feel better. After an hour of speaking to him, I did feel a little better..I learned that although he sent the biopsy out..they prepare it for him..so he is the pathologist. He said he feels strongly that it helps as he was the one who took the sample. He then said that he was sending it to a person he knows at Harvard to give him a second opinion..so I asked him what his worst case scenario was..he said it was one of two things..a pre melanoma mole or a melanoma in situ..he said if he was to diagnose without a second opinion..he would go with the first..but cut enough out to take care of the second. He really wants a second opinion to see how much he needs to take out..either way he said we got it as early as we could. I then asked him about the depth..he said that although he did a shaving (because he did not suspect a melanoma) he took a deep sample into the second layer..just above the muscle which allowed him a good look under the microscope..to see that it was at the surface (if it was a melanoma). He seems extremely knowledgeable and said his main reason for a second opinion was to make sure it was necessary to cut out that much and that if it was a melanoma in situ..that would change the treatment I.e. he would need to see me more often (every 6 months). He has taken care of my two basil cells and has done the mohs on one of them. He is very good at what he does. From reading up on dermatologist. ..I am always impressed as he has his head gear on at all times…he really takes the time to view everything on your body. So in the end..no kne wants melanoma..but I am hoping that this is my worst case scenario. Just wanted to hear form the experts if what I am being told makes sense. I originally thought when he wanted a second opinion..he had gotten an opinion from the lab and disagreed with it…he is the lab and he said the only reason he sent it is becuase he wants to get it right… -
- May 15, 2015 at 2:46 am
Actually, most sites remove the same margins (5mm) for severely atypical AND melanoma in situ. Good to get another opinion though, most large labs have at least two pair of eyes review a lesion as a standard protocol. Everything makes sense, a bump in the road. Prognosis is excellent once you have the excision.
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- May 21, 2015 at 1:03 am
I apologize for asking all of these silly questions..but Janner..I am just so scared waiting. This process has made me realize things about myself that I really dont care for..like my incredible need to know. I posted that I went to my doc to last week as it was driving me crazy (Thursday) and he told me what I posted….that worst case is was a melanoma in situ and he just wants to get a second opinion..said he should know last friday and of it wasb back by monday he would have the nurse call me..well no call..so I called yesterday and no word yet…now I am worried its worse..then my rational mind says it went to harvard last wed…and I am sure I am mot the only person in the world that is waiting..but then I think oh my..its that bad..I guessmy only question..does it take a while sometimes even if its the same diagnosis? -
- May 21, 2015 at 1:03 am
I apologize for asking all of these silly questions..but Janner..I am just so scared waiting. This process has made me realize things about myself that I really dont care for..like my incredible need to know. I posted that I went to my doc to last week as it was driving me crazy (Thursday) and he told me what I posted….that worst case is was a melanoma in situ and he just wants to get a second opinion..said he should know last friday and of it wasb back by monday he would have the nurse call me..well no call..so I called yesterday and no word yet…now I am worried its worse..then my rational mind says it went to harvard last wed…and I am sure I am mot the only person in the world that is waiting..but then I think oh my..its that bad..I guessmy only question..does it take a while sometimes even if its the same diagnosis? -
- May 21, 2015 at 1:03 am
I apologize for asking all of these silly questions..but Janner..I am just so scared waiting. This process has made me realize things about myself that I really dont care for..like my incredible need to know. I posted that I went to my doc to last week as it was driving me crazy (Thursday) and he told me what I posted….that worst case is was a melanoma in situ and he just wants to get a second opinion..said he should know last friday and of it wasb back by monday he would have the nurse call me..well no call..so I called yesterday and no word yet…now I am worried its worse..then my rational mind says it went to harvard last wed…and I am sure I am mot the only person in the world that is waiting..but then I think oh my..its that bad..I guessmy only question..does it take a while sometimes even if its the same diagnosis? -
- May 15, 2015 at 2:46 am
Actually, most sites remove the same margins (5mm) for severely atypical AND melanoma in situ. Good to get another opinion though, most large labs have at least two pair of eyes review a lesion as a standard protocol. Everything makes sense, a bump in the road. Prognosis is excellent once you have the excision.
-
- May 15, 2015 at 2:46 am
Actually, most sites remove the same margins (5mm) for severely atypical AND melanoma in situ. Good to get another opinion though, most large labs have at least two pair of eyes review a lesion as a standard protocol. Everything makes sense, a bump in the road. Prognosis is excellent once you have the excision.
-
- May 15, 2015 at 1:29 am
I know a couple folks said to wait until the second opinion was in but I thought a conversation
With the doctor would at least make me feel better. After an hour of speaking to him, I did feel a little better..I learned that although he sent the biopsy out..they prepare it for him..so he is the pathologist. He said he feels strongly that it helps as he was the one who took the sample. He then said that he was sending it to a person he knows at Harvard to give him a second opinion..so I asked him what his worst case scenario was..he said it was one of two things..a pre melanoma mole or a melanoma in situ..he said if he was to diagnose without a second opinion..he would go with the first..but cut enough out to take care of the second. He really wants a second opinion to see how much he needs to take out..either way he said we got it as early as we could. I then asked him about the depth..he said that although he did a shaving (because he did not suspect a melanoma) he took a deep sample into the second layer..just above the muscle which allowed him a good look under the microscope..to see that it was at the surface (if it was a melanoma). He seems extremely knowledgeable and said his main reason for a second opinion was to make sure it was necessary to cut out that much and that if it was a melanoma in situ..that would change the treatment I.e. he would need to see me more often (every 6 months). He has taken care of my two basil cells and has done the mohs on one of them. He is very good at what he does. From reading up on dermatologist. ..I am always impressed as he has his head gear on at all times…he really takes the time to view everything on your body. So in the end..no kne wants melanoma..but I am hoping that this is my worst case scenario. Just wanted to hear form the experts if what I am being told makes sense. I originally thought when he wanted a second opinion..he had gotten an opinion from the lab and disagreed with it…he is the lab and he said the only reason he sent it is becuase he wants to get it right… -
- May 15, 2015 at 1:29 am
I know a couple folks said to wait until the second opinion was in but I thought a conversation
With the doctor would at least make me feel better. After an hour of speaking to him, I did feel a little better..I learned that although he sent the biopsy out..they prepare it for him..so he is the pathologist. He said he feels strongly that it helps as he was the one who took the sample. He then said that he was sending it to a person he knows at Harvard to give him a second opinion..so I asked him what his worst case scenario was..he said it was one of two things..a pre melanoma mole or a melanoma in situ..he said if he was to diagnose without a second opinion..he would go with the first..but cut enough out to take care of the second. He really wants a second opinion to see how much he needs to take out..either way he said we got it as early as we could. I then asked him about the depth..he said that although he did a shaving (because he did not suspect a melanoma) he took a deep sample into the second layer..just above the muscle which allowed him a good look under the microscope..to see that it was at the surface (if it was a melanoma). He seems extremely knowledgeable and said his main reason for a second opinion was to make sure it was necessary to cut out that much and that if it was a melanoma in situ..that would change the treatment I.e. he would need to see me more often (every 6 months). He has taken care of my two basil cells and has done the mohs on one of them. He is very good at what he does. From reading up on dermatologist. ..I am always impressed as he has his head gear on at all times…he really takes the time to view everything on your body. So in the end..no kne wants melanoma..but I am hoping that this is my worst case scenario. Just wanted to hear form the experts if what I am being told makes sense. I originally thought when he wanted a second opinion..he had gotten an opinion from the lab and disagreed with it…he is the lab and he said the only reason he sent it is becuase he wants to get it right…
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