› Forums › General Melanoma Community › I see you are all so wonderful with help and I need some please
- This topic has 54 replies, 11 voices, and was last updated 8 years, 3 months ago by
DarcyJoMomma.
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- May 23, 2013 at 5:39 pm
I just got my pathology report and after cruising this board, I guess it doesn’t look too good. Any help or advice would be greatly appreciated.
Superficial spreading amelanotic, Anatomical level : at least iv, greatest thickness at least 2. 9 mm, ulceration present, radial growth phase present, vertical growth phase present epithelioid, spindled, margins extending to the lateral and deep tissue edges , mitosis 16 per sq mm , tumor infiltrating lymphocytes present , non brisk.
But at least there were no micro satellites, lol
Trying to stay positive waiting for the surgeon to call for my appointment . Please help me decipher this
- Replies
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- May 23, 2013 at 5:49 pm
I am so sorry about your diagnosis. I believe next step would be SNB (lymph nodes biopsy) to determine the stage. Hope they will be negative!
I am wondering how did your melanoma look like? Amelanotic lesions are so rare and often missed by doctors because of it.
How did you notice it? Thanks. -
- May 23, 2013 at 5:49 pm
I am so sorry about your diagnosis. I believe next step would be SNB (lymph nodes biopsy) to determine the stage. Hope they will be negative!
I am wondering how did your melanoma look like? Amelanotic lesions are so rare and often missed by doctors because of it.
How did you notice it? Thanks.-
- May 23, 2013 at 6:30 pm
I am waiting for a call for surgery and the SNB. The lesion started out small on my arm ,looked a little like eczema but never went away, then it started looking like a wart, then people started saying hey what the heck is on your arm! Everyone by then was sure it was squamous . -
- May 23, 2013 at 8:48 pm
I know that it's hard to wait for information. It's still a work day for many and they don't check the board all day. Things will pick up tonight.
Even so, I'm sure all will say that the SLN biopsy will tell you the next step. I hope they get you scheduled for that quickly. You need to be your own advocate and urge the doctors along. Ask lots of questions. Get everything you can in writing. This is a good group and will help you along.
Mike
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- May 23, 2013 at 8:48 pm
I know that it's hard to wait for information. It's still a work day for many and they don't check the board all day. Things will pick up tonight.
Even so, I'm sure all will say that the SLN biopsy will tell you the next step. I hope they get you scheduled for that quickly. You need to be your own advocate and urge the doctors along. Ask lots of questions. Get everything you can in writing. This is a good group and will help you along.
Mike
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- May 23, 2013 at 9:14 pm
Mike is right– waiting is one of the hardest things we have to do. Join the club.
Next you will need a sentinel node biopsy (SNB) and a wide local excision (WLE). Those will determine the stage of your melanoma (Stage I, Stage II, Stage III, etc). Once you get those results (yeah, wait wait wait for them), then you can think about what's next. My advice would be, STAY AWAY FROM THE INTERNET until you've gotten your staging information and had a chance to talk to a melanoma specialist. You will scare yourself silly and much of the information out there is incorrect and/or out of date.
While you are waiting (wait wait wait), please fill out your profile on this forum so that in the future we can refer to it to give the best advice we can.
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- May 23, 2013 at 9:14 pm
Mike is right– waiting is one of the hardest things we have to do. Join the club.
Next you will need a sentinel node biopsy (SNB) and a wide local excision (WLE). Those will determine the stage of your melanoma (Stage I, Stage II, Stage III, etc). Once you get those results (yeah, wait wait wait for them), then you can think about what's next. My advice would be, STAY AWAY FROM THE INTERNET until you've gotten your staging information and had a chance to talk to a melanoma specialist. You will scare yourself silly and much of the information out there is incorrect and/or out of date.
While you are waiting (wait wait wait), please fill out your profile on this forum so that in the future we can refer to it to give the best advice we can.
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- May 23, 2013 at 9:14 pm
Mike is right– waiting is one of the hardest things we have to do. Join the club.
Next you will need a sentinel node biopsy (SNB) and a wide local excision (WLE). Those will determine the stage of your melanoma (Stage I, Stage II, Stage III, etc). Once you get those results (yeah, wait wait wait for them), then you can think about what's next. My advice would be, STAY AWAY FROM THE INTERNET until you've gotten your staging information and had a chance to talk to a melanoma specialist. You will scare yourself silly and much of the information out there is incorrect and/or out of date.
While you are waiting (wait wait wait), please fill out your profile on this forum so that in the future we can refer to it to give the best advice we can.
-
- May 23, 2013 at 8:48 pm
I know that it's hard to wait for information. It's still a work day for many and they don't check the board all day. Things will pick up tonight.
Even so, I'm sure all will say that the SLN biopsy will tell you the next step. I hope they get you scheduled for that quickly. You need to be your own advocate and urge the doctors along. Ask lots of questions. Get everything you can in writing. This is a good group and will help you along.
Mike
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- May 23, 2013 at 9:34 pm
Is it the best pathology we could read? No. As you are already aware, there are some negative factors and this is a higher risk lesion. But there's really not a lot we can say at this point. The SNB will give you the next part of the staging and that's an important step. Waiting sucks – we all know it. But the results of the SNB – negative or positive – make a big distinction in treatment and your next step. We're all behind you hear hoping for a SNB negative results! Please continue to post any other questions you have!
Best wishes,
Janner
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- May 23, 2013 at 9:34 pm
Is it the best pathology we could read? No. As you are already aware, there are some negative factors and this is a higher risk lesion. But there's really not a lot we can say at this point. The SNB will give you the next part of the staging and that's an important step. Waiting sucks – we all know it. But the results of the SNB – negative or positive – make a big distinction in treatment and your next step. We're all behind you hear hoping for a SNB negative results! Please continue to post any other questions you have!
Best wishes,
Janner
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- May 23, 2013 at 9:34 pm
Is it the best pathology we could read? No. As you are already aware, there are some negative factors and this is a higher risk lesion. But there's really not a lot we can say at this point. The SNB will give you the next part of the staging and that's an important step. Waiting sucks – we all know it. But the results of the SNB – negative or positive – make a big distinction in treatment and your next step. We're all behind you hear hoping for a SNB negative results! Please continue to post any other questions you have!
Best wishes,
Janner
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- May 23, 2013 at 6:30 pm
I am waiting for a call for surgery and the SNB. The lesion started out small on my arm ,looked a little like eczema but never went away, then it started looking like a wart, then people started saying hey what the heck is on your arm! Everyone by then was sure it was squamous . -
- May 23, 2013 at 6:30 pm
I am waiting for a call for surgery and the SNB. The lesion started out small on my arm ,looked a little like eczema but never went away, then it started looking like a wart, then people started saying hey what the heck is on your arm! Everyone by then was sure it was squamous .
-
- May 23, 2013 at 5:49 pm
I am so sorry about your diagnosis. I believe next step would be SNB (lymph nodes biopsy) to determine the stage. Hope they will be negative!
I am wondering how did your melanoma look like? Amelanotic lesions are so rare and often missed by doctors because of it.
How did you notice it? Thanks. -
- May 23, 2013 at 11:46 pm
I know this is a horribly scary time for you but try to relax. There is hope. Make sure you are with a melanoma specialist, not just an oncologist. We are not that different. I had a 3.7 mm tumor, 17 mm mitosis, no ulceration but it was no surprise to find that it had already spread to my lymph nodes. Lucky for me, there were only 2 lymph nodes involved with micro metastasis. It's been three years now and I'm still without disease!
You'll be asked to make a lot of decisions in a very short time. If you feel like you need more time to research, ask for it. If you don't understand something the doctor has said ask questions. Now is not the time to be silent.
Take care,
Mary
Stage 3
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- May 23, 2013 at 11:46 pm
I know this is a horribly scary time for you but try to relax. There is hope. Make sure you are with a melanoma specialist, not just an oncologist. We are not that different. I had a 3.7 mm tumor, 17 mm mitosis, no ulceration but it was no surprise to find that it had already spread to my lymph nodes. Lucky for me, there were only 2 lymph nodes involved with micro metastasis. It's been three years now and I'm still without disease!
You'll be asked to make a lot of decisions in a very short time. If you feel like you need more time to research, ask for it. If you don't understand something the doctor has said ask questions. Now is not the time to be silent.
Take care,
Mary
Stage 3
-
- May 23, 2013 at 11:46 pm
I know this is a horribly scary time for you but try to relax. There is hope. Make sure you are with a melanoma specialist, not just an oncologist. We are not that different. I had a 3.7 mm tumor, 17 mm mitosis, no ulceration but it was no surprise to find that it had already spread to my lymph nodes. Lucky for me, there were only 2 lymph nodes involved with micro metastasis. It's been three years now and I'm still without disease!
You'll be asked to make a lot of decisions in a very short time. If you feel like you need more time to research, ask for it. If you don't understand something the doctor has said ask questions. Now is not the time to be silent.
Take care,
Mary
Stage 3
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- May 24, 2013 at 4:20 pm
Amelanotic melanoma is rare and that was my husband's diagnosis. His primary care doc missed it, thought it was Basal cell and said not to worry just get in to the derm. My husband got into his dermatologist and they didn't think it was melanoma either. I feel this is the most tricky melanoma because it doesn't look like what we were taught melanoma looks like and it grows very fast. We had a great surgeon at John's Hopkins (Dr. Lange) very agressive. My husband depth was 3.3mm and it was in his lymph nodes but micro not a lot and he could actually feel the lymph node at the time before surgery. I would just advise that you make sure your at a melanoma center that is top notch and agressive. My husband had a PETScan before his surgery, then he had the lymph node surgery where they inject the die and see where the closest lymphnodes (sentinal lymph node surgery). He was orginally diagnosed as Stage III because his lymph nodes were positive, but you do need to remember there are a lot of Stage III folks that stay that way and never advance and there are a lot of people that go in for this surgery and it didn't get to those lymphnodes and they stay at Stage II. There are many outcomes…
It's hard not to read all the stuff on the internet but try not to, worrying about things you don't know yet doesn't really help. My husband did advance but he is doing well currently disease free and hopefully will always stay that way. His original lymph node surgery was 2007 Ground Hog Day. So we never forget Ground Hog Day in our house.
Good luck and be agressive with this disease.
Rebecca
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- May 24, 2013 at 4:20 pm
Amelanotic melanoma is rare and that was my husband's diagnosis. His primary care doc missed it, thought it was Basal cell and said not to worry just get in to the derm. My husband got into his dermatologist and they didn't think it was melanoma either. I feel this is the most tricky melanoma because it doesn't look like what we were taught melanoma looks like and it grows very fast. We had a great surgeon at John's Hopkins (Dr. Lange) very agressive. My husband depth was 3.3mm and it was in his lymph nodes but micro not a lot and he could actually feel the lymph node at the time before surgery. I would just advise that you make sure your at a melanoma center that is top notch and agressive. My husband had a PETScan before his surgery, then he had the lymph node surgery where they inject the die and see where the closest lymphnodes (sentinal lymph node surgery). He was orginally diagnosed as Stage III because his lymph nodes were positive, but you do need to remember there are a lot of Stage III folks that stay that way and never advance and there are a lot of people that go in for this surgery and it didn't get to those lymphnodes and they stay at Stage II. There are many outcomes…
It's hard not to read all the stuff on the internet but try not to, worrying about things you don't know yet doesn't really help. My husband did advance but he is doing well currently disease free and hopefully will always stay that way. His original lymph node surgery was 2007 Ground Hog Day. So we never forget Ground Hog Day in our house.
Good luck and be agressive with this disease.
Rebecca
-
- May 24, 2013 at 4:20 pm
Amelanotic melanoma is rare and that was my husband's diagnosis. His primary care doc missed it, thought it was Basal cell and said not to worry just get in to the derm. My husband got into his dermatologist and they didn't think it was melanoma either. I feel this is the most tricky melanoma because it doesn't look like what we were taught melanoma looks like and it grows very fast. We had a great surgeon at John's Hopkins (Dr. Lange) very agressive. My husband depth was 3.3mm and it was in his lymph nodes but micro not a lot and he could actually feel the lymph node at the time before surgery. I would just advise that you make sure your at a melanoma center that is top notch and agressive. My husband had a PETScan before his surgery, then he had the lymph node surgery where they inject the die and see where the closest lymphnodes (sentinal lymph node surgery). He was orginally diagnosed as Stage III because his lymph nodes were positive, but you do need to remember there are a lot of Stage III folks that stay that way and never advance and there are a lot of people that go in for this surgery and it didn't get to those lymphnodes and they stay at Stage II. There are many outcomes…
It's hard not to read all the stuff on the internet but try not to, worrying about things you don't know yet doesn't really help. My husband did advance but he is doing well currently disease free and hopefully will always stay that way. His original lymph node surgery was 2007 Ground Hog Day. So we never forget Ground Hog Day in our house.
Good luck and be agressive with this disease.
Rebecca
-
- May 24, 2013 at 8:26 pm
It was pink and it looked more like a bug bite than anything suspicious. He asked me to look at over and over again and I even dismissed it. I thought he got bit by something, until he went in for the shave biopsy which was a mistake it should have been a punch biopsy (now we know better). Then it started to really look like something disturbing.
Rebecca
-
- May 24, 2013 at 8:26 pm
It was pink and it looked more like a bug bite than anything suspicious. He asked me to look at over and over again and I even dismissed it. I thought he got bit by something, until he went in for the shave biopsy which was a mistake it should have been a punch biopsy (now we know better). Then it started to really look like something disturbing.
Rebecca
-
- May 24, 2013 at 8:26 pm
It was pink and it looked more like a bug bite than anything suspicious. He asked me to look at over and over again and I even dismissed it. I thought he got bit by something, until he went in for the shave biopsy which was a mistake it should have been a punch biopsy (now we know better). Then it started to really look like something disturbing.
Rebecca
-
- May 24, 2013 at 8:26 pm
It was pink and it looked more like a bug bite than anything suspicious. He asked me to look at over and over again and I even dismissed it. I thought he got bit by something, until he went in for the shave biopsy which was a mistake it should have been a punch biopsy (now we know better). Then it started to really look like something disturbing.
Rebecca
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- January 3, 2016 at 4:22 am
I’m wondering if you could share with me why a shave biopsy was a bad idea? I’m asking because I am going to be seeing the dermatologist soon for a suspicious area. I’m no stranger to shaves and punches, but, so far nothing has been malignant. However, this spot is completely different than any I’ve had looked at before.Idk if we can share pictures here or not since I’m new, but my PCM told me it definitely looks like it should be checked by a dermatologist and could certainly be squamous cell or basal cell. But, the strange thing is that it developed very quickly and those two are generally not rapid-growth carcinomas.
That’s when I found info about amelanotic melanomas. Since this lesion started from a lentigo that I’ve had for a few years but morphed over the course of about two weeks into a pink, raised lesion with irregular borders. And, it itched the entire time. It still itches. Hydrocortisone cream helps for a bit, but hasn’t made it any smaller.
Any info you’re willing to share will be greatly appreciated!
Darcy
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- January 4, 2016 at 2:31 am
Darcy,
I think shave biopsies are not recommended because it can make it difficult after the fact to determine the thickness of the melanoma. That is why for any areas that look like melanoma or a patient that has a history of melanoma they should always do punch biopsies.
Brian
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- January 4, 2016 at 2:31 am
Darcy,
I think shave biopsies are not recommended because it can make it difficult after the fact to determine the thickness of the melanoma. That is why for any areas that look like melanoma or a patient that has a history of melanoma they should always do punch biopsies.
Brian
-
- January 4, 2016 at 2:31 am
Darcy,
I think shave biopsies are not recommended because it can make it difficult after the fact to determine the thickness of the melanoma. That is why for any areas that look like melanoma or a patient that has a history of melanoma they should always do punch biopsies.
Brian
-
- January 5, 2016 at 10:27 pm
Thank you both! -
- January 5, 2016 at 10:27 pm
Thank you both! -
- January 5, 2016 at 10:27 pm
Thank you both! -
- January 3, 2016 at 4:22 am
I’m wondering if you could share with me why a shave biopsy was a bad idea? I’m asking because I am going to be seeing the dermatologist soon for a suspicious area. I’m no stranger to shaves and punches, but, so far nothing has been malignant. However, this spot is completely different than any I’ve had looked at before.Idk if we can share pictures here or not since I’m new, but my PCM told me it definitely looks like it should be checked by a dermatologist and could certainly be squamous cell or basal cell. But, the strange thing is that it developed very quickly and those two are generally not rapid-growth carcinomas.
That’s when I found info about amelanotic melanomas. Since this lesion started from a lentigo that I’ve had for a few years but morphed over the course of about two weeks into a pink, raised lesion with irregular borders. And, it itched the entire time. It still itches. Hydrocortisone cream helps for a bit, but hasn’t made it any smaller.
Any info you’re willing to share will be greatly appreciated!
Darcy
-
- January 3, 2016 at 4:22 am
I’m wondering if you could share with me why a shave biopsy was a bad idea? I’m asking because I am going to be seeing the dermatologist soon for a suspicious area. I’m no stranger to shaves and punches, but, so far nothing has been malignant. However, this spot is completely different than any I’ve had looked at before.Idk if we can share pictures here or not since I’m new, but my PCM told me it definitely looks like it should be checked by a dermatologist and could certainly be squamous cell or basal cell. But, the strange thing is that it developed very quickly and those two are generally not rapid-growth carcinomas.
That’s when I found info about amelanotic melanomas. Since this lesion started from a lentigo that I’ve had for a few years but morphed over the course of about two weeks into a pink, raised lesion with irregular borders. And, it itched the entire time. It still itches. Hydrocortisone cream helps for a bit, but hasn’t made it any smaller.
Any info you’re willing to share will be greatly appreciated!
Darcy
-
- May 24, 2013 at 8:26 pm
It was pink and it looked more like a bug bite than anything suspicious. He asked me to look at over and over again and I even dismissed it. I thought he got bit by something, until he went in for the shave biopsy which was a mistake it should have been a punch biopsy (now we know better). Then it started to really look like something disturbing.
Rebecca
-
- May 24, 2013 at 8:26 pm
It was pink and it looked more like a bug bite than anything suspicious. He asked me to look at over and over again and I even dismissed it. I thought he got bit by something, until he went in for the shave biopsy which was a mistake it should have been a punch biopsy (now we know better). Then it started to really look like something disturbing.
Rebecca
-
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