› Forums › General Melanoma Community › Can path reports be wrong?
- This topic has 15 replies, 3 voices, and was last updated 10 years, 7 months ago by
Mrbass.
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- July 27, 2015 at 5:31 am
Hi,
I recently found a mass on the shoulder/arm area had my local surgeon remove it. The path report said it was metastatic melanoma spindle cell type, but there where some unknowns so the slides were sent to The Cleveland Clinic for furthur testing. That report was the same diagnosis.
Then I saw a surgical oncoligist he wants to widen the borders and check the sentinal lymph nodes. But wont be for 3 weeks. Having a pet scan this week. The dr said he wont consider this metastatic until a primary site is found. With 2 path reports saying metastatic melanoma I'm thinking we are acting to passive here.
I asked about a dermatoligist and was told maybe after surgury. The Dr didn't even look me over for the primary, just relying on scans.
Can the report be wrong or is a sure thing I have metastatic spindle cell melanoma?
Thanks,
Matt
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- July 27, 2015 at 7:01 am
Matt – I'm so sorry to hear this, it's brought a lot of uncertainty into your life with very little warning. I think the fact that the path has already got a 2nd opinion on your slides from the Cleveland Clinic suggests that the results are now fairly certain. However, did the path explicitly state 'metastatic' or did it state 'malignant'?
Widening borders is very standard for any melanoma, checking the nodes is done (in Australia, at least) only when the lesion (mole or freckle) is >1mm deep. In your case, as there is not really a lesion but a mass, this could also be standard but I'm really not sure of that one. It's a shame you have to wait for three weeks because in my opinion, it's the waiting that's the hard part. So much uncertainty.
Now, I am absolutely no expert on this area, but perhaps the reason that your surgical oncologist is treating this as a primary until proven otherwise, is because the type of melanoma you have can present as a mass. I think (this is honestly based on 5 minutes research) that you have desmoplastic melanoma, aka spindle cell melanoma, which presents as a thickening area of skin (not a dark/melanocytic spot). This is the page I read on desmoplastic melanoma:
http://www.dermnetnz.org/lesions/desmoplastic-melanoma.html
The same site has a page on melanoma pathology, including metastatic pathology and how difficult it is to diagnose (right at end of page):
http://www.dermnetnz.org/pathology/melanoma-path.html
So, because of the type of melanoma and also known difficulty with diagnosing metastases, maybe your surgical oncologist is taking the right approach.
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- July 27, 2015 at 3:02 pm
Thanks for the reply,
Yes it does say metestatic melanoma on both reports. The first report said spindle cell the 2nd report said high grade epithelioid malignancywhich the Dr says is another way to say spindle cell. I also saw some of the research on the desmoplastic and asked the Dr about that he said I don't have that…So confusing. The CC report also said significant pleomorphism and brisk mitotic activity.
Sounds like the worst possible news to me however the Dr is very optimistic and in no hurry.
Thanks again,
Matt
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- July 27, 2015 at 3:02 pm
Thanks for the reply,
Yes it does say metestatic melanoma on both reports. The first report said spindle cell the 2nd report said high grade epithelioid malignancywhich the Dr says is another way to say spindle cell. I also saw some of the research on the desmoplastic and asked the Dr about that he said I don't have that…So confusing. The CC report also said significant pleomorphism and brisk mitotic activity.
Sounds like the worst possible news to me however the Dr is very optimistic and in no hurry.
Thanks again,
Matt
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- July 27, 2015 at 3:02 pm
Thanks for the reply,
Yes it does say metestatic melanoma on both reports. The first report said spindle cell the 2nd report said high grade epithelioid malignancywhich the Dr says is another way to say spindle cell. I also saw some of the research on the desmoplastic and asked the Dr about that he said I don't have that…So confusing. The CC report also said significant pleomorphism and brisk mitotic activity.
Sounds like the worst possible news to me however the Dr is very optimistic and in no hurry.
Thanks again,
Matt
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- July 27, 2015 at 7:01 am
Matt – I'm so sorry to hear this, it's brought a lot of uncertainty into your life with very little warning. I think the fact that the path has already got a 2nd opinion on your slides from the Cleveland Clinic suggests that the results are now fairly certain. However, did the path explicitly state 'metastatic' or did it state 'malignant'?
Widening borders is very standard for any melanoma, checking the nodes is done (in Australia, at least) only when the lesion (mole or freckle) is >1mm deep. In your case, as there is not really a lesion but a mass, this could also be standard but I'm really not sure of that one. It's a shame you have to wait for three weeks because in my opinion, it's the waiting that's the hard part. So much uncertainty.
Now, I am absolutely no expert on this area, but perhaps the reason that your surgical oncologist is treating this as a primary until proven otherwise, is because the type of melanoma you have can present as a mass. I think (this is honestly based on 5 minutes research) that you have desmoplastic melanoma, aka spindle cell melanoma, which presents as a thickening area of skin (not a dark/melanocytic spot). This is the page I read on desmoplastic melanoma:
http://www.dermnetnz.org/lesions/desmoplastic-melanoma.html
The same site has a page on melanoma pathology, including metastatic pathology and how difficult it is to diagnose (right at end of page):
http://www.dermnetnz.org/pathology/melanoma-path.html
So, because of the type of melanoma and also known difficulty with diagnosing metastases, maybe your surgical oncologist is taking the right approach.
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- July 27, 2015 at 7:01 am
Matt – I'm so sorry to hear this, it's brought a lot of uncertainty into your life with very little warning. I think the fact that the path has already got a 2nd opinion on your slides from the Cleveland Clinic suggests that the results are now fairly certain. However, did the path explicitly state 'metastatic' or did it state 'malignant'?
Widening borders is very standard for any melanoma, checking the nodes is done (in Australia, at least) only when the lesion (mole or freckle) is >1mm deep. In your case, as there is not really a lesion but a mass, this could also be standard but I'm really not sure of that one. It's a shame you have to wait for three weeks because in my opinion, it's the waiting that's the hard part. So much uncertainty.
Now, I am absolutely no expert on this area, but perhaps the reason that your surgical oncologist is treating this as a primary until proven otherwise, is because the type of melanoma you have can present as a mass. I think (this is honestly based on 5 minutes research) that you have desmoplastic melanoma, aka spindle cell melanoma, which presents as a thickening area of skin (not a dark/melanocytic spot). This is the page I read on desmoplastic melanoma:
http://www.dermnetnz.org/lesions/desmoplastic-melanoma.html
The same site has a page on melanoma pathology, including metastatic pathology and how difficult it is to diagnose (right at end of page):
http://www.dermnetnz.org/pathology/melanoma-path.html
So, because of the type of melanoma and also known difficulty with diagnosing metastases, maybe your surgical oncologist is taking the right approach.
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- July 28, 2015 at 2:40 pm
Path reports are never cut and dried and may differ from pathologist to pathologist. Some lesions are hard to categorize. In general, a primary melanoma starts at the epidermis and grows downward into the skin. A recurrence would grow from the lymph vessels upward into the lower layers of skin first. So what the pathologists are seeing is an indication that your lesion started in the lower areas of skin — hence the metastatic label. Again, pathology is as much an art as a science so there is some variability.
So now, your doc wants to do a WLE and SNB. In general, if you were to have a recurrence on the arm, it would infer that the primary melanoma were further down the lymph chain — as in further down the arm. If this were a metastatic lesion, that would be the most likely area for a primary. Unknown primaries are typically thought to have regressed, that is, the body destroys the lesion (natural process) but not before some cells escape and go elsewhere. So lets say you once had a lesion on your lower arm that disappeared but managed to send some cells into the lymph vessels and those cells took up residence at the current tumor location. Doing the WLE gets rid of the local tumor. Doing the SNB is looking up the chain to see if any cells have made it to the lymph node basin. In general, although it can happen, it wouldn't be as likely to have a primary elsewhere on your body that would bypass the major lymph basin in the armpit and go down your arm — at least without seeing other disease. So whether or not this is a primary or metastatic lesion that started from a primary further down the arm, I can see your doctor treating them the same way.
BTW, scans aren't reliable in finding primaries because scans have a minimum resolution and primaries aren't often big enough to show up. I do have a friend that had conflicting pathology reports – some saying primary and some saying metastatic lesion (very deep). She did the WLE, had the SNB which was positive in one node and had a complete lymph node dissection. No other treatment. That was about 8 years ago and she is still cancer free.
You can always get a third opinion if that would make you feel better. Choose a large institution that sees a lot of melanoma and see what they see.
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- July 28, 2015 at 2:40 pm
Path reports are never cut and dried and may differ from pathologist to pathologist. Some lesions are hard to categorize. In general, a primary melanoma starts at the epidermis and grows downward into the skin. A recurrence would grow from the lymph vessels upward into the lower layers of skin first. So what the pathologists are seeing is an indication that your lesion started in the lower areas of skin — hence the metastatic label. Again, pathology is as much an art as a science so there is some variability.
So now, your doc wants to do a WLE and SNB. In general, if you were to have a recurrence on the arm, it would infer that the primary melanoma were further down the lymph chain — as in further down the arm. If this were a metastatic lesion, that would be the most likely area for a primary. Unknown primaries are typically thought to have regressed, that is, the body destroys the lesion (natural process) but not before some cells escape and go elsewhere. So lets say you once had a lesion on your lower arm that disappeared but managed to send some cells into the lymph vessels and those cells took up residence at the current tumor location. Doing the WLE gets rid of the local tumor. Doing the SNB is looking up the chain to see if any cells have made it to the lymph node basin. In general, although it can happen, it wouldn't be as likely to have a primary elsewhere on your body that would bypass the major lymph basin in the armpit and go down your arm — at least without seeing other disease. So whether or not this is a primary or metastatic lesion that started from a primary further down the arm, I can see your doctor treating them the same way.
BTW, scans aren't reliable in finding primaries because scans have a minimum resolution and primaries aren't often big enough to show up. I do have a friend that had conflicting pathology reports – some saying primary and some saying metastatic lesion (very deep). She did the WLE, had the SNB which was positive in one node and had a complete lymph node dissection. No other treatment. That was about 8 years ago and she is still cancer free.
You can always get a third opinion if that would make you feel better. Choose a large institution that sees a lot of melanoma and see what they see.
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- July 28, 2015 at 2:40 pm
Path reports are never cut and dried and may differ from pathologist to pathologist. Some lesions are hard to categorize. In general, a primary melanoma starts at the epidermis and grows downward into the skin. A recurrence would grow from the lymph vessels upward into the lower layers of skin first. So what the pathologists are seeing is an indication that your lesion started in the lower areas of skin — hence the metastatic label. Again, pathology is as much an art as a science so there is some variability.
So now, your doc wants to do a WLE and SNB. In general, if you were to have a recurrence on the arm, it would infer that the primary melanoma were further down the lymph chain — as in further down the arm. If this were a metastatic lesion, that would be the most likely area for a primary. Unknown primaries are typically thought to have regressed, that is, the body destroys the lesion (natural process) but not before some cells escape and go elsewhere. So lets say you once had a lesion on your lower arm that disappeared but managed to send some cells into the lymph vessels and those cells took up residence at the current tumor location. Doing the WLE gets rid of the local tumor. Doing the SNB is looking up the chain to see if any cells have made it to the lymph node basin. In general, although it can happen, it wouldn't be as likely to have a primary elsewhere on your body that would bypass the major lymph basin in the armpit and go down your arm — at least without seeing other disease. So whether or not this is a primary or metastatic lesion that started from a primary further down the arm, I can see your doctor treating them the same way.
BTW, scans aren't reliable in finding primaries because scans have a minimum resolution and primaries aren't often big enough to show up. I do have a friend that had conflicting pathology reports – some saying primary and some saying metastatic lesion (very deep). She did the WLE, had the SNB which was positive in one node and had a complete lymph node dissection. No other treatment. That was about 8 years ago and she is still cancer free.
You can always get a third opinion if that would make you feel better. Choose a large institution that sees a lot of melanoma and see what they see.
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