› Forums › Cutaneous Melanoma Community › Need help understanding my diagnosis
- This topic has 36 replies, 7 voices, and was last updated 6 years, 11 months ago by
casagrayson.
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- February 15, 2017 at 9:12 pm
Hello everyone, I’m a 37yo female who developed a small black shiny mole a few months ago. It was very tiny but was not a mole that changed, just popped up. I really just knew when I saw it. (I’m a midwife and have been in health care as a nurse for years).They did a shave biopsy, which in hindsight I realize wasn’t the best course of action on Monday the 6th. I just knew it was melanoma but the shave was pretty deep and I figured it would be gone. I was surprised when later that evening I took the band aid off and there was the same thing, same size in the same spot. I panicked knowing this can’t be good. I got the call today 9 days later that yes it is mm. It was just shy of 2mm in the biopsy and obviously there is more still in my thigh. I’m scheduled for Tuesday the 21st for I guess what is a wide excision. They said they’d be taking a large area down to the muscle and I’d have multiple internal and external stitches.
The report said mm in situ. I ask her how they could determine that when I still have some in my leg. She didn’t know and the surgeon is on vacay and won’t be back until Monday but without WE they can’t grade it? They won’t be doing any lymph node tests until the lab results come back and say it is needed, but from what I have read it should be done at the same time?
If anyone has any advice and possibly if I should run to a different practice (I have national insurance that is good thankfully). I’m a mom to a 6yo special needs daughter and I need to make sure I’m doing everything right. I’m beside myself. I’d feel better if it weren’t so deep. Someone with more knowledge please help, and be honest. Thank you in advance.
GG
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- February 15, 2017 at 9:35 pm
So the dark color still on your leg is likely internal brusing/scabs and NOT melanoma. That isn't uncommon to see "dark" after the removal. If the report says "in situ", that means the atypical melanocytes are confined to the epidermis only and not in the dermal component at all. And if the remaining component is actually a mole (doubtful but you didn't post your report), it doesn't mean the rest of the melanocytes left in the dermis are "melanoma" melanocytes.
Is the path report being done by a dermatopathologist? A sentinel node biposy would not be done for in situ. I really think you need to trust the report more than what you see on your skin — which is more likely "trauma" of some sort. The pathology is what is looking at those individual cells and determining their makeup and where, in the biopsy, they are located. Can you post your entire report?
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- February 15, 2017 at 9:35 pm
So the dark color still on your leg is likely internal brusing/scabs and NOT melanoma. That isn't uncommon to see "dark" after the removal. If the report says "in situ", that means the atypical melanocytes are confined to the epidermis only and not in the dermal component at all. And if the remaining component is actually a mole (doubtful but you didn't post your report), it doesn't mean the rest of the melanocytes left in the dermis are "melanoma" melanocytes.
Is the path report being done by a dermatopathologist? A sentinel node biposy would not be done for in situ. I really think you need to trust the report more than what you see on your skin — which is more likely "trauma" of some sort. The pathology is what is looking at those individual cells and determining their makeup and where, in the biopsy, they are located. Can you post your entire report?
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- February 15, 2017 at 9:49 pm
I’m certain that what was left was still part of the black mole. It was a fresh wound and I wish I would have taken a picture but I had 4 removed that day and the others were all pink but this had the same exact size of blackness in the exact same spot as the growth. The growth was roundish and truly looked like nodular melanoma. It is scabbed over now and the entire thing is dark. It was only obvious in the fresh wound hours later.The biopsy was sent out for pathology and took 9 days to come back. It was done by a PA. The surgery is scheduled in office with a dermatologist that does only surgery.
The only thing I got from the report was that it was just shy of 2mm in depth and was malignant. From what I’ve read the shave biopsy ruins the ability to determine exact depth.
I was called with the report, I’ve been sitting in my car just thinking for over an hour. I will definitely pick up my report tomorrow and post it.
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- February 15, 2017 at 9:49 pm
I’m certain that what was left was still part of the black mole. It was a fresh wound and I wish I would have taken a picture but I had 4 removed that day and the others were all pink but this had the same exact size of blackness in the exact same spot as the growth. The growth was roundish and truly looked like nodular melanoma. It is scabbed over now and the entire thing is dark. It was only obvious in the fresh wound hours later.The biopsy was sent out for pathology and took 9 days to come back. It was done by a PA. The surgery is scheduled in office with a dermatologist that does only surgery.
The only thing I got from the report was that it was just shy of 2mm in depth and was malignant. From what I’ve read the shave biopsy ruins the ability to determine exact depth.
I was called with the report, I’ve been sitting in my car just thinking for over an hour. I will definitely pick up my report tomorrow and post it.
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- February 15, 2017 at 9:49 pm
I’m certain that what was left was still part of the black mole. It was a fresh wound and I wish I would have taken a picture but I had 4 removed that day and the others were all pink but this had the same exact size of blackness in the exact same spot as the growth. The growth was roundish and truly looked like nodular melanoma. It is scabbed over now and the entire thing is dark. It was only obvious in the fresh wound hours later.The biopsy was sent out for pathology and took 9 days to come back. It was done by a PA. The surgery is scheduled in office with a dermatologist that does only surgery.
The only thing I got from the report was that it was just shy of 2mm in depth and was malignant. From what I’ve read the shave biopsy ruins the ability to determine exact depth.
I was called with the report, I’ve been sitting in my car just thinking for over an hour. I will definitely pick up my report tomorrow and post it.
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- February 15, 2017 at 10:00 pm
Shave biopsies compromise depth if they bisect melanoma. If the shave was 2mm deep and there was melanoma at that depth, that's a whole different story from melanoma in situ. 2mm depth shave really doesn't compromise staging because 2mm and greater always indicates stage II. But if the report states in situ, the shave did not bisect melanoma at 2mm deep. So something isn't right. The pathology will tell you if what you see at the deep part of the margin was melanoma, normal mole or normal tissue.
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- February 15, 2017 at 10:00 pm
Shave biopsies compromise depth if they bisect melanoma. If the shave was 2mm deep and there was melanoma at that depth, that's a whole different story from melanoma in situ. 2mm depth shave really doesn't compromise staging because 2mm and greater always indicates stage II. But if the report states in situ, the shave did not bisect melanoma at 2mm deep. So something isn't right. The pathology will tell you if what you see at the deep part of the margin was melanoma, normal mole or normal tissue.
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- February 15, 2017 at 10:00 pm
Shave biopsies compromise depth if they bisect melanoma. If the shave was 2mm deep and there was melanoma at that depth, that's a whole different story from melanoma in situ. 2mm depth shave really doesn't compromise staging because 2mm and greater always indicates stage II. But if the report states in situ, the shave did not bisect melanoma at 2mm deep. So something isn't right. The pathology will tell you if what you see at the deep part of the margin was melanoma, normal mole or normal tissue.
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- June 15, 2017 at 3:02 am
What a journey this has been. After getting a second opinion from Dr Mihm sp? On the pathology it was certainly not in situ. I had a 5 inch by 2 inch WLE anterior left thigh by my first Dr. Went for second opinion and mole, they noticed the report didn’t look right and sent it to Boston. Unable to be correctly staged or SLN biopsy to be done because of the initial screw up I underwent surgery yet again yesterday with 20 staples and numerous stitches to avoid a skin graft. Can you post pictures? -
- June 15, 2017 at 3:07 am
I updated my picture with my surgery from yesterday. I’ll be awaiting my pathology. I can’t stress enough to get a second opinion when you feel uneasy. If I hadn’t I probably wouldn’t be here next year. -
- June 15, 2017 at 3:18 pm
Did the second opinion give you a correct depth?
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- February 15, 2017 at 9:35 pm
So the dark color still on your leg is likely internal brusing/scabs and NOT melanoma. That isn't uncommon to see "dark" after the removal. If the report says "in situ", that means the atypical melanocytes are confined to the epidermis only and not in the dermal component at all. And if the remaining component is actually a mole (doubtful but you didn't post your report), it doesn't mean the rest of the melanocytes left in the dermis are "melanoma" melanocytes.
Is the path report being done by a dermatopathologist? A sentinel node biposy would not be done for in situ. I really think you need to trust the report more than what you see on your skin — which is more likely "trauma" of some sort. The pathology is what is looking at those individual cells and determining their makeup and where, in the biopsy, they are located. Can you post your entire report?
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- February 15, 2017 at 9:40 pm
Hello GG. I hate to say this, but something doesn't sound right. Melanoma In Situ doesn't have any depth – it's confined to the epidermis only. If yours was 2mm, that would (I believe) put you at stage 2. Standard of care for that would be a WLE and SLNB.
My recommendation is to get a copy of the path report and see a Melanoma specialist.
Good luck,
Ann
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- February 15, 2017 at 10:38 pm
The nurse who called me was not very knowledgeable. I think she might have thrown in in situ because she didn’t sound very comfortable on the phone. She did read the report initially as malignant melanoma with a depth of 1.7 something. My head was spinning just a bit at the time, then she threw in in situ. I’m absolutely certain the shave didn’t remove it all. I knew, just knew inside that it was melanoma when I first saw it. What I didn’t expect was that it would be this deep.Nothing they have done so far makes any sense. It was a shiny black nodule, boy do I wish I would have taken a picture. They should have never did a shave biopsy. I’m a few hours from the Cleveland Clinic and I’m calling tomorrow to see how fast they can get me in with an oncologist that specializes in melanoma. I’m terrified, I’m sure many people on here totally understand that.
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- February 15, 2017 at 10:38 pm
The nurse who called me was not very knowledgeable. I think she might have thrown in in situ because she didn’t sound very comfortable on the phone. She did read the report initially as malignant melanoma with a depth of 1.7 something. My head was spinning just a bit at the time, then she threw in in situ. I’m absolutely certain the shave didn’t remove it all. I knew, just knew inside that it was melanoma when I first saw it. What I didn’t expect was that it would be this deep.Nothing they have done so far makes any sense. It was a shiny black nodule, boy do I wish I would have taken a picture. They should have never did a shave biopsy. I’m a few hours from the Cleveland Clinic and I’m calling tomorrow to see how fast they can get me in with an oncologist that specializes in melanoma. I’m terrified, I’m sure many people on here totally understand that.
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- February 15, 2017 at 10:38 pm
The nurse who called me was not very knowledgeable. I think she might have thrown in in situ because she didn’t sound very comfortable on the phone. She did read the report initially as malignant melanoma with a depth of 1.7 something. My head was spinning just a bit at the time, then she threw in in situ. I’m absolutely certain the shave didn’t remove it all. I knew, just knew inside that it was melanoma when I first saw it. What I didn’t expect was that it would be this deep.Nothing they have done so far makes any sense. It was a shiny black nodule, boy do I wish I would have taken a picture. They should have never did a shave biopsy. I’m a few hours from the Cleveland Clinic and I’m calling tomorrow to see how fast they can get me in with an oncologist that specializes in melanoma. I’m terrified, I’m sure many people on here totally understand that.
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- February 15, 2017 at 11:04 pm
You definitely need a second opinion and you need the physical report in your hands so you have all of the information in front of you. Get that before you see a second doc, so they can see what it says too. If it's anywhere over 1.00mm you definitely need a SLNB at the same time as the WLE surgery.. it is done BEFORE the WLE and cannot accurately be done afterward. Hope you get this sorted out, glad you did some research and found us here. Some folks have had not so smart doctors also who did a WLE with no SLNB and they should have had an SLNB.. makes things much more complicated than they need to be.
All the best,
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- February 15, 2017 at 11:04 pm
You definitely need a second opinion and you need the physical report in your hands so you have all of the information in front of you. Get that before you see a second doc, so they can see what it says too. If it's anywhere over 1.00mm you definitely need a SLNB at the same time as the WLE surgery.. it is done BEFORE the WLE and cannot accurately be done afterward. Hope you get this sorted out, glad you did some research and found us here. Some folks have had not so smart doctors also who did a WLE with no SLNB and they should have had an SLNB.. makes things much more complicated than they need to be.
All the best,
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- February 15, 2017 at 11:04 pm
You definitely need a second opinion and you need the physical report in your hands so you have all of the information in front of you. Get that before you see a second doc, so they can see what it says too. If it's anywhere over 1.00mm you definitely need a SLNB at the same time as the WLE surgery.. it is done BEFORE the WLE and cannot accurately be done afterward. Hope you get this sorted out, glad you did some research and found us here. Some folks have had not so smart doctors also who did a WLE with no SLNB and they should have had an SLNB.. makes things much more complicated than they need to be.
All the best,
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- February 16, 2017 at 12:17 am
Thank you very much. Yes the shave then the WLE with no biopsy threw up a red flag after I did some research. I’m going to pick up my report tomorrow and I’ll post it. I am certain about the malignancy and the mm she stated. I guess maybe there can be more sense made after I see it. I’m no stranger to shave biopsies, I’m one of those people with moles everywhere. I also have a precancerous one on my shoulder they are going to remove a section of skin, and I’ve had the same on my back. My sister had melanoma in situ on 4 sites on her back 20 years ago from moles she was born with. This was completely different. It showed up and grew fast, when I first saw it I thought it was a tick since it was black and shiny and if you brushed your fingers across it it felt hard. I honestly knew the first time I noticed it (luckily it’s on the front of my thigh where I see often and know it’s been there for maybe 6 weeks) that it was cancer. I wish I would have went straight to a specialist but you know, hindsight. Anyway, thanks again. Anyone ever been to the Cleveland Clinic for melanoma treatment? They are world renowned for many of their specialties but I don’t know how the oncology is. I also am close enough to the UPMC health system in Pittsburgh. -
- February 16, 2017 at 12:17 am
Thank you very much. Yes the shave then the WLE with no biopsy threw up a red flag after I did some research. I’m going to pick up my report tomorrow and I’ll post it. I am certain about the malignancy and the mm she stated. I guess maybe there can be more sense made after I see it. I’m no stranger to shave biopsies, I’m one of those people with moles everywhere. I also have a precancerous one on my shoulder they are going to remove a section of skin, and I’ve had the same on my back. My sister had melanoma in situ on 4 sites on her back 20 years ago from moles she was born with. This was completely different. It showed up and grew fast, when I first saw it I thought it was a tick since it was black and shiny and if you brushed your fingers across it it felt hard. I honestly knew the first time I noticed it (luckily it’s on the front of my thigh where I see often and know it’s been there for maybe 6 weeks) that it was cancer. I wish I would have went straight to a specialist but you know, hindsight. Anyway, thanks again. Anyone ever been to the Cleveland Clinic for melanoma treatment? They are world renowned for many of their specialties but I don’t know how the oncology is. I also am close enough to the UPMC health system in Pittsburgh. -
- February 16, 2017 at 7:43 pm
Thank you to everyone here that replied. I’m so blessed to say that the nurse read me my report incorrectly. I guess it’s not the most common thing but the mole has a root and is deep, but only the top is melanoma so it is in situ. The depth she read was of the sample. It does not state the depth of the melanoma but clearly says in situ.I hope this sounds right. They will be removing a large area down to the muscle on Tuesday with no biopsy needed. If this sounds off please do let me know, otherwise for now I am doing a major happy dance. I have probably 100 moles on my body and a family hx, I’m so glad to know a wonderful community is here. Thank you!
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- February 16, 2017 at 7:58 pm
That's actually one of the scenarios I described. Normal melanocytes deeper in the tissue but melanoma in the epidermis. In situ does not have a depth – the depth is only listed when the lesion becomes invasive into the dermis. The standard is a WLE (wide local excision) which removes all tissue down to the muscle fascia. Melanoma in situ typically calls for 5mm as a standard. But there is one study I've read that suggest 9mm is a better choice. Invasive lesions typically have 1cm margins. You do what makes you comfortable – ask the doc. But since you do have melanocytes deeper in the lesion, I personally might ask for the larger margins to err on the side of caution.
Glad the lesion truly was in situ! Watch for CHANGE!
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- February 16, 2017 at 7:58 pm
That's actually one of the scenarios I described. Normal melanocytes deeper in the tissue but melanoma in the epidermis. In situ does not have a depth – the depth is only listed when the lesion becomes invasive into the dermis. The standard is a WLE (wide local excision) which removes all tissue down to the muscle fascia. Melanoma in situ typically calls for 5mm as a standard. But there is one study I've read that suggest 9mm is a better choice. Invasive lesions typically have 1cm margins. You do what makes you comfortable – ask the doc. But since you do have melanocytes deeper in the lesion, I personally might ask for the larger margins to err on the side of caution.
Glad the lesion truly was in situ! Watch for CHANGE!
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- February 16, 2017 at 11:07 pm
SO happy to hear it was a misunderstanding! Always happy when someone gets some good news on here. Get that WLE and then keep up the good work with derm visits and checking for change in current moles or new moles. Hope you never get another one!
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- February 17, 2017 at 4:21 am
You all are so awesome! I’ll keep everyone in my thoughts and prayers. Someone asked me today if I was mad at the nurse. No, not at all. Gave me a good hard look at life and one of the best days ever.I have the WLE on Tuesday. From what the nurse said he is doing a pretty big area. I’m so blessed it was in an area I could see because it was so tiny I’d probably never see it. Then the following Tuesday I’ll have the dysplastic one on my shoulder done.
Once again thank you to everyone!
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- February 17, 2017 at 4:21 am
You all are so awesome! I’ll keep everyone in my thoughts and prayers. Someone asked me today if I was mad at the nurse. No, not at all. Gave me a good hard look at life and one of the best days ever.I have the WLE on Tuesday. From what the nurse said he is doing a pretty big area. I’m so blessed it was in an area I could see because it was so tiny I’d probably never see it. Then the following Tuesday I’ll have the dysplastic one on my shoulder done.
Once again thank you to everyone!
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- February 16, 2017 at 11:07 pm
SO happy to hear it was a misunderstanding! Always happy when someone gets some good news on here. Get that WLE and then keep up the good work with derm visits and checking for change in current moles or new moles. Hope you never get another one!
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- February 16, 2017 at 7:43 pm
Thank you to everyone here that replied. I’m so blessed to say that the nurse read me my report incorrectly. I guess it’s not the most common thing but the mole has a root and is deep, but only the top is melanoma so it is in situ. The depth she read was of the sample. It does not state the depth of the melanoma but clearly says in situ.I hope this sounds right. They will be removing a large area down to the muscle on Tuesday with no biopsy needed. If this sounds off please do let me know, otherwise for now I am doing a major happy dance. I have probably 100 moles on my body and a family hx, I’m so glad to know a wonderful community is here. Thank you!
-
- February 16, 2017 at 12:17 am
Thank you very much. Yes the shave then the WLE with no biopsy threw up a red flag after I did some research. I’m going to pick up my report tomorrow and I’ll post it. I am certain about the malignancy and the mm she stated. I guess maybe there can be more sense made after I see it. I’m no stranger to shave biopsies, I’m one of those people with moles everywhere. I also have a precancerous one on my shoulder they are going to remove a section of skin, and I’ve had the same on my back. My sister had melanoma in situ on 4 sites on her back 20 years ago from moles she was born with. This was completely different. It showed up and grew fast, when I first saw it I thought it was a tick since it was black and shiny and if you brushed your fingers across it it felt hard. I honestly knew the first time I noticed it (luckily it’s on the front of my thigh where I see often and know it’s been there for maybe 6 weeks) that it was cancer. I wish I would have went straight to a specialist but you know, hindsight. Anyway, thanks again. Anyone ever been to the Cleveland Clinic for melanoma treatment? They are world renowned for many of their specialties but I don’t know how the oncology is. I also am close enough to the UPMC health system in Pittsburgh.
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- February 15, 2017 at 9:40 pm
Hello GG. I hate to say this, but something doesn't sound right. Melanoma In Situ doesn't have any depth – it's confined to the epidermis only. If yours was 2mm, that would (I believe) put you at stage 2. Standard of care for that would be a WLE and SLNB.
My recommendation is to get a copy of the path report and see a Melanoma specialist.
Good luck,
Ann
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- February 15, 2017 at 9:40 pm
Hello GG. I hate to say this, but something doesn't sound right. Melanoma In Situ doesn't have any depth – it's confined to the epidermis only. If yours was 2mm, that would (I believe) put you at stage 2. Standard of care for that would be a WLE and SLNB.
My recommendation is to get a copy of the path report and see a Melanoma specialist.
Good luck,
Ann
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