› Forums › General Melanoma Community › When WIll This Ever End??!!
- This topic has 12 replies, 3 voices, and was last updated 10 years, 4 months ago by
WendyD..
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- January 10, 2014 at 10:19 am
I finally got to see a dermatologists and got my skin checked. Well, once the derm seen all of my path reports she suggested that I might have to have MOHS Surgery because she felt my margins weren't big enough. My melanoma was quite thin and the intial biopsy itself had clear margins. Then I had my WLE done and it came back completely clear as well. Why in the world would I have to have MOHS done? Then while she was checking me she marked two more places on my back and done shave biopsies on them. Why would she do that knowing my history with melanoma? Shave biopsies can alter my results if it comes back as melanoma. Grrr!! Well, on another note I did request for them to get my slides and let a derm path look at my intial biopsy which they are going to do. I definitely wanted a second opinion on that. But from my knowledge unless these other biopsies come back melanoma they only want me to come back at 6 month intervals. Is that normal? Also I did finally convince my doctor to excise the abnormal lesion as well and I believe they said everything came back ok on that. I guess I'm just confused on everything. She don't think I need 3 month follow ups but I need MOHS surgery? Has anyone else had this to happen to them before? Also I know Clark's level isn't used a lot anymore, but I am kind of curious what mine was or do they even check that anymore? I know I read something about if it is level iv that AJJC will put it in their system just not on the actual path report. I don't know everything is so controversial on some of these sites you never know what to believe. I want my life back! I have read other people's stories how melanoma was all they thought about once they got their diagnosis, and I understand completely cause I have done the same. It's almost like I'm afraid to be happy because I feel like it could be short lived by a recurrence or by me finding out it had already spread without me knowing it. Oh and by the way every back pain, headache, or any other pain I have now is melanoma( not really but that's what comes to my mind now). Where before I would count these things as oh well I'm getting older and stiffer. Or wouldn't pay much mind to them. Now I'm thinking should I get an x-ray or something? Or just ignore it cause I couldn't handle the diagnosis anyway? When I first was diagnosed and realized the low risk lesion I had I was relieved and felt very optimistic. I mean 95% or higher survival seemed pretty good. But now my thinking has gone to what if I'm the 2-5% that becomes a statisic? Thanks for letting me vent, because I don't feel like I can do this with my family. I have to put a smile on my face as if this never happened and like I'm going to out live Methuselah (which was the oldest living man in the Bible for those who didn't know). Well, I guess I might need some sleep sometime today. Good Night For Now.
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- January 11, 2014 at 5:39 pm
Hey Wendy,
Since we're neighbors (live on Signal) thought I'd better answer! Glad you found a place to vent. That is always important! The other thing that is REALLY important is to see a melanoma specialist…or at the very least a dermatologist with LOTS of experience with melanoma. Dr. Hall Reynolds is amazing and has always taken very good care of me. He is at the Chattanooga skin and cancer clinic. There are measurements for the margin that is standard of care for melanoma lesions. So it is important to determine whether your margins were completely clear or not and if they meet that standard. Usually a surgeon does the resection (which may have happened in your case…not sure). I highly recommend John Gwin (over at Memorial Suite 553) for general surgery purposes. Then, depending on the depth of the initial lesion as well as other factors, sentinel node biopsy may or may not be needed. I have not heard of MOH's being used in melanoma. It is more often utilized for basal cell and squamous cell skin cancer. If you need something more than these procedures a melanoma specialist would be your best move. Take care. Try not to worry…but do make sure you get the care you need….so you will live to be as old as Methuselah!!
yours, Celeste
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- January 12, 2014 at 5:31 am
I am glad to have a neighbor for sure. Not glad you are going through this too, but just nice to know I'm not alone. I will be calling the dermatologists next week and discussing the best options. Hopefully I can get this over with and live the best life I can from here. 🙂
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- January 12, 2014 at 5:31 am
I am glad to have a neighbor for sure. Not glad you are going through this too, but just nice to know I'm not alone. I will be calling the dermatologists next week and discussing the best options. Hopefully I can get this over with and live the best life I can from here. 🙂
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- January 12, 2014 at 5:31 am
I am glad to have a neighbor for sure. Not glad you are going through this too, but just nice to know I'm not alone. I will be calling the dermatologists next week and discussing the best options. Hopefully I can get this over with and live the best life I can from here. 🙂
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- January 11, 2014 at 5:39 pm
Hey Wendy,
Since we're neighbors (live on Signal) thought I'd better answer! Glad you found a place to vent. That is always important! The other thing that is REALLY important is to see a melanoma specialist…or at the very least a dermatologist with LOTS of experience with melanoma. Dr. Hall Reynolds is amazing and has always taken very good care of me. He is at the Chattanooga skin and cancer clinic. There are measurements for the margin that is standard of care for melanoma lesions. So it is important to determine whether your margins were completely clear or not and if they meet that standard. Usually a surgeon does the resection (which may have happened in your case…not sure). I highly recommend John Gwin (over at Memorial Suite 553) for general surgery purposes. Then, depending on the depth of the initial lesion as well as other factors, sentinel node biopsy may or may not be needed. I have not heard of MOH's being used in melanoma. It is more often utilized for basal cell and squamous cell skin cancer. If you need something more than these procedures a melanoma specialist would be your best move. Take care. Try not to worry…but do make sure you get the care you need….so you will live to be as old as Methuselah!!
yours, Celeste
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- January 11, 2014 at 5:39 pm
Hey Wendy,
Since we're neighbors (live on Signal) thought I'd better answer! Glad you found a place to vent. That is always important! The other thing that is REALLY important is to see a melanoma specialist…or at the very least a dermatologist with LOTS of experience with melanoma. Dr. Hall Reynolds is amazing and has always taken very good care of me. He is at the Chattanooga skin and cancer clinic. There are measurements for the margin that is standard of care for melanoma lesions. So it is important to determine whether your margins were completely clear or not and if they meet that standard. Usually a surgeon does the resection (which may have happened in your case…not sure). I highly recommend John Gwin (over at Memorial Suite 553) for general surgery purposes. Then, depending on the depth of the initial lesion as well as other factors, sentinel node biopsy may or may not be needed. I have not heard of MOH's being used in melanoma. It is more often utilized for basal cell and squamous cell skin cancer. If you need something more than these procedures a melanoma specialist would be your best move. Take care. Try not to worry…but do make sure you get the care you need….so you will live to be as old as Methuselah!!
yours, Celeste
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- January 11, 2014 at 8:46 pm
You need 1cm margins. Look at your path reports and see if that is what you have. Have your doc show you where the margins are short. Personally, I don't think Mohs is the answer here. If you need larger margins, just take them. Have another WLE. But Mohs is a staged approach and since your biopsy had clean margins, I'm just not sure what is to be gained by doing Mohs. Mohs isn't typically done for melanoma unless it is Lentigo Maligna. Mohs uses a frozen section technique to view melanocytes. Melanocytes don't show up well with frozen section – they are better visualized when the tissue is processed in parafin and then stained – hence a more traditional biopsy route. There are times when it might be a good time to try Mohs (like when it is on the face), but just to get additional margins doesn't make sense to me. My cutaneous oncologist (mel specialist) is also a Mohs surgeon and says he would never use Mohs for just a "normal" melanoma. He says it is just too difficult to read.
Many docs use shave biopsies because they are EASY FOR THE DOC. They require no stitches and no followup visits if they aren't melanoma. For me, they hurt more healing and look worse – I won't have a shave biopsy for those reasons alone let alone the obvious issue with melanoma staging depth if the lesion were melanoma. You have to tell your doc that you don't want shaves and your doc may not like that. Remember, this is YOUR show.
6 month followup is fine. Just watch your own moles for CHANGE. Since <10% ever have another melanoma primary, most people in your shoes will never deal with melanoma again. If you have a lesion that you KNOW HAS CHANGED FOR THE WORSE, you can always call and get an earlier appointment. There is no official "standard" for followup. I have had 3 primaries and go every 6 months. If I had only had 1 primary, I would be on yearly intervals now (several years out).
Get copies of your path reports and see what they say. Clarks Level is "subjective" so even if it is called out, it is hardly any type of guarantee that another dermpath would say the same. Clarks Level IV is no longer called out in staging. It used to be, but no more.
As with aches and pains, just think about it. Would this pain bother me if I hadn't had cancer? The answer would be "no". And that's the reality. As Dr. Casey used to say, "Look for the most likely explanation, THEN look for zebras". In your case, melanoma is the zebra.
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- January 12, 2014 at 5:39 am
I will definitely be getting my path reports for these last two procedures(one includes the WLE), and I am going to talk to the derm this week as well. I agree with you Janner this is my show, my body. And with God's grace I expect to be here for awhile. And I have calmed down some on thinking the worst with my back pains. I have had problems with my back WAY before melanoma, so I'm not going to let my mind go there. I believe if we worry enough we can actually cause symptoms that really aren't there. The mind is a strange thing and we can't let it run out of control. Thanks for all of the advice. 🙂
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- January 12, 2014 at 5:39 am
I will definitely be getting my path reports for these last two procedures(one includes the WLE), and I am going to talk to the derm this week as well. I agree with you Janner this is my show, my body. And with God's grace I expect to be here for awhile. And I have calmed down some on thinking the worst with my back pains. I have had problems with my back WAY before melanoma, so I'm not going to let my mind go there. I believe if we worry enough we can actually cause symptoms that really aren't there. The mind is a strange thing and we can't let it run out of control. Thanks for all of the advice. 🙂
-
- January 12, 2014 at 5:39 am
I will definitely be getting my path reports for these last two procedures(one includes the WLE), and I am going to talk to the derm this week as well. I agree with you Janner this is my show, my body. And with God's grace I expect to be here for awhile. And I have calmed down some on thinking the worst with my back pains. I have had problems with my back WAY before melanoma, so I'm not going to let my mind go there. I believe if we worry enough we can actually cause symptoms that really aren't there. The mind is a strange thing and we can't let it run out of control. Thanks for all of the advice. 🙂
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- January 11, 2014 at 8:46 pm
You need 1cm margins. Look at your path reports and see if that is what you have. Have your doc show you where the margins are short. Personally, I don't think Mohs is the answer here. If you need larger margins, just take them. Have another WLE. But Mohs is a staged approach and since your biopsy had clean margins, I'm just not sure what is to be gained by doing Mohs. Mohs isn't typically done for melanoma unless it is Lentigo Maligna. Mohs uses a frozen section technique to view melanocytes. Melanocytes don't show up well with frozen section – they are better visualized when the tissue is processed in parafin and then stained – hence a more traditional biopsy route. There are times when it might be a good time to try Mohs (like when it is on the face), but just to get additional margins doesn't make sense to me. My cutaneous oncologist (mel specialist) is also a Mohs surgeon and says he would never use Mohs for just a "normal" melanoma. He says it is just too difficult to read.
Many docs use shave biopsies because they are EASY FOR THE DOC. They require no stitches and no followup visits if they aren't melanoma. For me, they hurt more healing and look worse – I won't have a shave biopsy for those reasons alone let alone the obvious issue with melanoma staging depth if the lesion were melanoma. You have to tell your doc that you don't want shaves and your doc may not like that. Remember, this is YOUR show.
6 month followup is fine. Just watch your own moles for CHANGE. Since <10% ever have another melanoma primary, most people in your shoes will never deal with melanoma again. If you have a lesion that you KNOW HAS CHANGED FOR THE WORSE, you can always call and get an earlier appointment. There is no official "standard" for followup. I have had 3 primaries and go every 6 months. If I had only had 1 primary, I would be on yearly intervals now (several years out).
Get copies of your path reports and see what they say. Clarks Level is "subjective" so even if it is called out, it is hardly any type of guarantee that another dermpath would say the same. Clarks Level IV is no longer called out in staging. It used to be, but no more.
As with aches and pains, just think about it. Would this pain bother me if I hadn't had cancer? The answer would be "no". And that's the reality. As Dr. Casey used to say, "Look for the most likely explanation, THEN look for zebras". In your case, melanoma is the zebra.
-
- January 11, 2014 at 8:46 pm
You need 1cm margins. Look at your path reports and see if that is what you have. Have your doc show you where the margins are short. Personally, I don't think Mohs is the answer here. If you need larger margins, just take them. Have another WLE. But Mohs is a staged approach and since your biopsy had clean margins, I'm just not sure what is to be gained by doing Mohs. Mohs isn't typically done for melanoma unless it is Lentigo Maligna. Mohs uses a frozen section technique to view melanocytes. Melanocytes don't show up well with frozen section – they are better visualized when the tissue is processed in parafin and then stained – hence a more traditional biopsy route. There are times when it might be a good time to try Mohs (like when it is on the face), but just to get additional margins doesn't make sense to me. My cutaneous oncologist (mel specialist) is also a Mohs surgeon and says he would never use Mohs for just a "normal" melanoma. He says it is just too difficult to read.
Many docs use shave biopsies because they are EASY FOR THE DOC. They require no stitches and no followup visits if they aren't melanoma. For me, they hurt more healing and look worse – I won't have a shave biopsy for those reasons alone let alone the obvious issue with melanoma staging depth if the lesion were melanoma. You have to tell your doc that you don't want shaves and your doc may not like that. Remember, this is YOUR show.
6 month followup is fine. Just watch your own moles for CHANGE. Since <10% ever have another melanoma primary, most people in your shoes will never deal with melanoma again. If you have a lesion that you KNOW HAS CHANGED FOR THE WORSE, you can always call and get an earlier appointment. There is no official "standard" for followup. I have had 3 primaries and go every 6 months. If I had only had 1 primary, I would be on yearly intervals now (several years out).
Get copies of your path reports and see what they say. Clarks Level is "subjective" so even if it is called out, it is hardly any type of guarantee that another dermpath would say the same. Clarks Level IV is no longer called out in staging. It used to be, but no more.
As with aches and pains, just think about it. Would this pain bother me if I hadn't had cancer? The answer would be "no". And that's the reality. As Dr. Casey used to say, "Look for the most likely explanation, THEN look for zebras". In your case, melanoma is the zebra.
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