› Forums › General Melanoma Community › I thought I was done here… Need advice
- This topic has 15 replies, 3 voices, and was last updated 12 years, 4 months ago by
JenC.
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- November 29, 2011 at 2:27 am
I check this board regularly…
I check this board regularly… but I thought it was just infomational/ research so that I could keep on top of the treatment of this disease so I can help with the fight and keep in the loop for my two young kids. I lost my husband to melanoma almost 5 months ago. I was on here daily, fighting to find some info that would save him. I got a lot of great info. I just got results of my own biopsy – it is melanoma in situ. All I can think of are my kids – how can I prevent them from going through all tlhe suffering that their daddy went through with such a strong family history.
I am on the hunt again for any information. In the meantime – just a WLE and watch and wait……. but how can I watch and wait when I know what this "oh its nothing" can turn into a big something. Is there anything else that I can do instead of just a WLE and wait?!?!?! What choices do I have? My husband had the same choice at stage 3. I'm just beginning again, but is the current state of things the same as 2 years ago? Unless I let this spread I have no other option but wait? I will go back to my clinical trial research, but it obviously didn't help my husband much. What can I do differently?
JenC
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- November 29, 2011 at 3:08 am
In situ and stage III are two entirely different beasts. In situ is confined to the epidermis – where no blood or lymph vessels reside. That's why it basically has a 100% cure rate because it lacks the ability to spread. Stage III is when it is systemic. Two totally different prognoses and treatment options. A WLE is basically all you can do for in situ. I've had one in situ removed 11 years ago via WLE and two stage IB's removed 19 and 10 years ago respectively. All were removed via WLE and no other treatment. Certainly, melanoma is capricious, but in situ (stage 0) is not in the same category as anything else here. It is even thought that it might be over diagnosed in order to CYA of the pathologist who might be debating between an atypical lesion and in situ. It's easy to be jaded with your husband's history, but the reality is stage 0 is "curable" with a WLE. Nothing is 100%, but it's about as good as you're going to get with melanoma.
Best wishes,
Janner
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- November 29, 2011 at 3:08 am
In situ and stage III are two entirely different beasts. In situ is confined to the epidermis – where no blood or lymph vessels reside. That's why it basically has a 100% cure rate because it lacks the ability to spread. Stage III is when it is systemic. Two totally different prognoses and treatment options. A WLE is basically all you can do for in situ. I've had one in situ removed 11 years ago via WLE and two stage IB's removed 19 and 10 years ago respectively. All were removed via WLE and no other treatment. Certainly, melanoma is capricious, but in situ (stage 0) is not in the same category as anything else here. It is even thought that it might be over diagnosed in order to CYA of the pathologist who might be debating between an atypical lesion and in situ. It's easy to be jaded with your husband's history, but the reality is stage 0 is "curable" with a WLE. Nothing is 100%, but it's about as good as you're going to get with melanoma.
Best wishes,
Janner
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- November 29, 2011 at 3:08 am
In situ and stage III are two entirely different beasts. In situ is confined to the epidermis – where no blood or lymph vessels reside. That's why it basically has a 100% cure rate because it lacks the ability to spread. Stage III is when it is systemic. Two totally different prognoses and treatment options. A WLE is basically all you can do for in situ. I've had one in situ removed 11 years ago via WLE and two stage IB's removed 19 and 10 years ago respectively. All were removed via WLE and no other treatment. Certainly, melanoma is capricious, but in situ (stage 0) is not in the same category as anything else here. It is even thought that it might be over diagnosed in order to CYA of the pathologist who might be debating between an atypical lesion and in situ. It's easy to be jaded with your husband's history, but the reality is stage 0 is "curable" with a WLE. Nothing is 100%, but it's about as good as you're going to get with melanoma.
Best wishes,
Janner
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- November 29, 2011 at 4:57 am
Hi Jen!
The kids will be fine! Knowledge is Power! They will grow up sun smart. Start now with "skin checks" by you and their pediatrician. It will become routine for them. Don't let them be afraid of the sun but do explain melanoma and family history so they will also get in the habit of using sunscreen and hats. I understand how very scared you must be but the words "in situ" are music to my ears. I don't think there is a "watch and wait" for in situ. It's a done deal. You and the kids stay vigilant together and have a great life.
I'm asking God to bless you and your family and keep you safe always,
Cynthia C
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- November 29, 2011 at 4:57 am
Hi Jen!
The kids will be fine! Knowledge is Power! They will grow up sun smart. Start now with "skin checks" by you and their pediatrician. It will become routine for them. Don't let them be afraid of the sun but do explain melanoma and family history so they will also get in the habit of using sunscreen and hats. I understand how very scared you must be but the words "in situ" are music to my ears. I don't think there is a "watch and wait" for in situ. It's a done deal. You and the kids stay vigilant together and have a great life.
I'm asking God to bless you and your family and keep you safe always,
Cynthia C
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- November 29, 2011 at 4:57 am
Hi Jen!
The kids will be fine! Knowledge is Power! They will grow up sun smart. Start now with "skin checks" by you and their pediatrician. It will become routine for them. Don't let them be afraid of the sun but do explain melanoma and family history so they will also get in the habit of using sunscreen and hats. I understand how very scared you must be but the words "in situ" are music to my ears. I don't think there is a "watch and wait" for in situ. It's a done deal. You and the kids stay vigilant together and have a great life.
I'm asking God to bless you and your family and keep you safe always,
Cynthia C
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- December 1, 2011 at 5:46 am
Thanks for your replies. I have calmed down, but given my last two years I don't think my concern was unreasonable. I do realize that I am lucky to have found it early. My husband went in to have his mole checked on the top of his head and was sent home being told don't worry about it. period. No suggestion of what to look for or recommendation to see a dermatologist. I had my mole biopsied 7 years ago and it grew back around the scar. I go to the dermatologist annually and for 3 years I have pointed out the regrown mole and asked for a biopsy and was told it did not appear to be anything to worry about – my last visit was in April. Six months later I decided I wanted it gone and asked for a biopsy again. I was told that the doctor determined that it was not suspicious and it would be considered cosmetic surgery and billed as such to my insurance. Even as the doctor was cutting it off she assured me that it had not grown in size. I know this cancer is tricky, but if caught early it is treatable,however why is it so difficult to get a biopsy done? I do hear that it is over diagnosed, but this hasn't been the case in my family. Janner, could you clarify – you said that in situ lacks the ability to spread. If left untreated, could it spread? Is this the beginning of malignant melanoma or a different type completely? My husband had nodular melanoma that started at the mole on his scalp and spread to the lymph nodes and eventually was everywhere. Everyone told us if caught early he would have been fine. Had he not gone through this, I would not have insisted on a biopsy.
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- December 1, 2011 at 3:35 pm
One thing stands out immediately from your post. You said this is a "re-biopsy". A biopsy of an area that had been biopsied before. ANY TIME you do pathology where there is scar tissue, the melanocytes will appear abnormal. This is nothing to do with them being atypical, but the scar tissue makes them look worse than they really are. So, it's very possible that your lesion might look worse on pathology than it really was. Pathologists do the best they can to make a good diagnosis, but scar tissue will always confuse things.
You didn't state what type of melanoma you had. I'm assuming it was superficial spreading (SSM) which accounts for about 70% of melanomas. Melanoma has two distinct growth patterns. The first is radial which is "horizontal" on the skins surface. Melanoma can grow for years in the radial growth phase. This means it doesn't grow "down" but outwards. As I said, there are no blood vessels or lymph vessels in the epidermis and you need those type of vessels to transport melanoma cells elsewhere. So melanoma in situ is melanoma that is growing outward on the epidermis. It hasn't changed yet to the vertical growth phase (distinctly different morphology) where it can penetrate into the dermal layers and become invasive. BTW, nodular melanoma also has a radial growth phase but it is considered to be extremely short before it enters the vertical growth phase. It's growth patterns are extremely quick in comparison to SSM.
It is thought that some melanoma in situs will NEVER become invasive. That many people will die of other things and actually have an in situ melanoma on their skin. Of course, this is hard to prove as who wants to wait and see what happens? It's the same with people who have atypical moles. The vast majority of atypical moles will NEVER change to melanoma. Some people call these lesions "pre-cancerous", but that implies they will eventually change to cancer. That rarely happens.
It's hard to know for sure, but if your lesion hadn't outwardly changed, it probably wasn't doing much in the way of growing. That could mean it had no intention of growing further, was confused by scar tissue and not going to ever do anything, or eventually would have changed and become invasive. There is no way to know which scenario would have played out. But there is a reason in situ melanoma has such a high cure rate – it just doesn't have the means to spread.
I hope this helps. Feel free to email me if you have more questions.
Janner
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- December 9, 2011 at 5:45 am
Janner, thank you so much for your input! Turns out you were right on. I had my initial biopsy 7 years ago and it was read by a general pathologist. When they did this biopsy they requested the tissue block from the old biopsy and a dermopathologist re-tested it using a newer technique. The new path report said that it was melanoma in situ associated with an intradermal nevus and that it was present at the margins of the sample. It also said that it was likely the same thing 7 years ago. Since then it spread to a total diameter of 13mm around the scar of the first biopsy (which originally removed the entire mole). Last Friday I had the WLE. I have been a wreck all week, epecially since every one says, "if caught early…." and I now knew that it was there for 7 years. The new WLE pathology shows no abnormal tissue. I feel so much better but I am still so very nervous for my children. God bless everyone here on this board, whether you are here for yourself or a loved one!
JenC
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- December 9, 2011 at 5:45 am
Janner, thank you so much for your input! Turns out you were right on. I had my initial biopsy 7 years ago and it was read by a general pathologist. When they did this biopsy they requested the tissue block from the old biopsy and a dermopathologist re-tested it using a newer technique. The new path report said that it was melanoma in situ associated with an intradermal nevus and that it was present at the margins of the sample. It also said that it was likely the same thing 7 years ago. Since then it spread to a total diameter of 13mm around the scar of the first biopsy (which originally removed the entire mole). Last Friday I had the WLE. I have been a wreck all week, epecially since every one says, "if caught early…." and I now knew that it was there for 7 years. The new WLE pathology shows no abnormal tissue. I feel so much better but I am still so very nervous for my children. God bless everyone here on this board, whether you are here for yourself or a loved one!
JenC
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- December 9, 2011 at 5:45 am
Janner, thank you so much for your input! Turns out you were right on. I had my initial biopsy 7 years ago and it was read by a general pathologist. When they did this biopsy they requested the tissue block from the old biopsy and a dermopathologist re-tested it using a newer technique. The new path report said that it was melanoma in situ associated with an intradermal nevus and that it was present at the margins of the sample. It also said that it was likely the same thing 7 years ago. Since then it spread to a total diameter of 13mm around the scar of the first biopsy (which originally removed the entire mole). Last Friday I had the WLE. I have been a wreck all week, epecially since every one says, "if caught early…." and I now knew that it was there for 7 years. The new WLE pathology shows no abnormal tissue. I feel so much better but I am still so very nervous for my children. God bless everyone here on this board, whether you are here for yourself or a loved one!
JenC
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- December 1, 2011 at 3:35 pm
One thing stands out immediately from your post. You said this is a "re-biopsy". A biopsy of an area that had been biopsied before. ANY TIME you do pathology where there is scar tissue, the melanocytes will appear abnormal. This is nothing to do with them being atypical, but the scar tissue makes them look worse than they really are. So, it's very possible that your lesion might look worse on pathology than it really was. Pathologists do the best they can to make a good diagnosis, but scar tissue will always confuse things.
You didn't state what type of melanoma you had. I'm assuming it was superficial spreading (SSM) which accounts for about 70% of melanomas. Melanoma has two distinct growth patterns. The first is radial which is "horizontal" on the skins surface. Melanoma can grow for years in the radial growth phase. This means it doesn't grow "down" but outwards. As I said, there are no blood vessels or lymph vessels in the epidermis and you need those type of vessels to transport melanoma cells elsewhere. So melanoma in situ is melanoma that is growing outward on the epidermis. It hasn't changed yet to the vertical growth phase (distinctly different morphology) where it can penetrate into the dermal layers and become invasive. BTW, nodular melanoma also has a radial growth phase but it is considered to be extremely short before it enters the vertical growth phase. It's growth patterns are extremely quick in comparison to SSM.
It is thought that some melanoma in situs will NEVER become invasive. That many people will die of other things and actually have an in situ melanoma on their skin. Of course, this is hard to prove as who wants to wait and see what happens? It's the same with people who have atypical moles. The vast majority of atypical moles will NEVER change to melanoma. Some people call these lesions "pre-cancerous", but that implies they will eventually change to cancer. That rarely happens.
It's hard to know for sure, but if your lesion hadn't outwardly changed, it probably wasn't doing much in the way of growing. That could mean it had no intention of growing further, was confused by scar tissue and not going to ever do anything, or eventually would have changed and become invasive. There is no way to know which scenario would have played out. But there is a reason in situ melanoma has such a high cure rate – it just doesn't have the means to spread.
I hope this helps. Feel free to email me if you have more questions.
Janner
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- December 1, 2011 at 3:35 pm
One thing stands out immediately from your post. You said this is a "re-biopsy". A biopsy of an area that had been biopsied before. ANY TIME you do pathology where there is scar tissue, the melanocytes will appear abnormal. This is nothing to do with them being atypical, but the scar tissue makes them look worse than they really are. So, it's very possible that your lesion might look worse on pathology than it really was. Pathologists do the best they can to make a good diagnosis, but scar tissue will always confuse things.
You didn't state what type of melanoma you had. I'm assuming it was superficial spreading (SSM) which accounts for about 70% of melanomas. Melanoma has two distinct growth patterns. The first is radial which is "horizontal" on the skins surface. Melanoma can grow for years in the radial growth phase. This means it doesn't grow "down" but outwards. As I said, there are no blood vessels or lymph vessels in the epidermis and you need those type of vessels to transport melanoma cells elsewhere. So melanoma in situ is melanoma that is growing outward on the epidermis. It hasn't changed yet to the vertical growth phase (distinctly different morphology) where it can penetrate into the dermal layers and become invasive. BTW, nodular melanoma also has a radial growth phase but it is considered to be extremely short before it enters the vertical growth phase. It's growth patterns are extremely quick in comparison to SSM.
It is thought that some melanoma in situs will NEVER become invasive. That many people will die of other things and actually have an in situ melanoma on their skin. Of course, this is hard to prove as who wants to wait and see what happens? It's the same with people who have atypical moles. The vast majority of atypical moles will NEVER change to melanoma. Some people call these lesions "pre-cancerous", but that implies they will eventually change to cancer. That rarely happens.
It's hard to know for sure, but if your lesion hadn't outwardly changed, it probably wasn't doing much in the way of growing. That could mean it had no intention of growing further, was confused by scar tissue and not going to ever do anything, or eventually would have changed and become invasive. There is no way to know which scenario would have played out. But there is a reason in situ melanoma has such a high cure rate – it just doesn't have the means to spread.
I hope this helps. Feel free to email me if you have more questions.
Janner
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- December 1, 2011 at 5:46 am
Thanks for your replies. I have calmed down, but given my last two years I don't think my concern was unreasonable. I do realize that I am lucky to have found it early. My husband went in to have his mole checked on the top of his head and was sent home being told don't worry about it. period. No suggestion of what to look for or recommendation to see a dermatologist. I had my mole biopsied 7 years ago and it grew back around the scar. I go to the dermatologist annually and for 3 years I have pointed out the regrown mole and asked for a biopsy and was told it did not appear to be anything to worry about – my last visit was in April. Six months later I decided I wanted it gone and asked for a biopsy again. I was told that the doctor determined that it was not suspicious and it would be considered cosmetic surgery and billed as such to my insurance. Even as the doctor was cutting it off she assured me that it had not grown in size. I know this cancer is tricky, but if caught early it is treatable,however why is it so difficult to get a biopsy done? I do hear that it is over diagnosed, but this hasn't been the case in my family. Janner, could you clarify – you said that in situ lacks the ability to spread. If left untreated, could it spread? Is this the beginning of malignant melanoma or a different type completely? My husband had nodular melanoma that started at the mole on his scalp and spread to the lymph nodes and eventually was everywhere. Everyone told us if caught early he would have been fine. Had he not gone through this, I would not have insisted on a biopsy.
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- December 1, 2011 at 5:46 am
Thanks for your replies. I have calmed down, but given my last two years I don't think my concern was unreasonable. I do realize that I am lucky to have found it early. My husband went in to have his mole checked on the top of his head and was sent home being told don't worry about it. period. No suggestion of what to look for or recommendation to see a dermatologist. I had my mole biopsied 7 years ago and it grew back around the scar. I go to the dermatologist annually and for 3 years I have pointed out the regrown mole and asked for a biopsy and was told it did not appear to be anything to worry about – my last visit was in April. Six months later I decided I wanted it gone and asked for a biopsy again. I was told that the doctor determined that it was not suspicious and it would be considered cosmetic surgery and billed as such to my insurance. Even as the doctor was cutting it off she assured me that it had not grown in size. I know this cancer is tricky, but if caught early it is treatable,however why is it so difficult to get a biopsy done? I do hear that it is over diagnosed, but this hasn't been the case in my family. Janner, could you clarify – you said that in situ lacks the ability to spread. If left untreated, could it spread? Is this the beginning of malignant melanoma or a different type completely? My husband had nodular melanoma that started at the mole on his scalp and spread to the lymph nodes and eventually was everywhere. Everyone told us if caught early he would have been fine. Had he not gone through this, I would not have insisted on a biopsy.
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