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- This topic has 20 replies, 6 voices, and was last updated 13 years, 5 months ago by StevenK.
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- June 16, 2011 at 7:37 pm
Got the call this morning. Melanoma. They excised it a few hours later and now the entire side of my face is bandaged up. The report doesn't say nodule melanoma, but it presented like that. A fast-growing mole out of nowhere. They don'y know the depth because doctor did a shave biopsy. He thought it was something else. Been about 5 months since it first appeared. Doctor says it was very small and a good chance it hasn't spread. I'm not so sure. He screwed up doing a shave. I'm so scared. I can hardly think straight. Is it possible it hasn't spread? – Steve
Got the call this morning. Melanoma. They excised it a few hours later and now the entire side of my face is bandaged up. The report doesn't say nodule melanoma, but it presented like that. A fast-growing mole out of nowhere. They don'y know the depth because doctor did a shave biopsy. He thought it was something else. Been about 5 months since it first appeared. Doctor says it was very small and a good chance it hasn't spread. I'm not so sure. He screwed up doing a shave. I'm so scared. I can hardly think straight. Is it possible it hasn't spread? – Steve
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- June 16, 2011 at 8:19 pm
Steve:
Melanoma varies quite a bit from person to person. For some people it is very aggressive; for others it is slow growing. So, bottom line is that it is entirely possible it hasn't spread. The pathology report should help. They can look at other characteristics of the tumor to help see how aggressive it is. I suspect they will want to check to see if lymph nodes are involved. After all the tests you will know more.
Your anxiety is perfectly normal, but do what you can to keep it in check. Melanoma can have dire consequences, but many, many people have been where you are and are living perfectly normal, cancer free lives years later.
Please provide an update when you know more!
Tim–MRF
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- June 16, 2011 at 8:19 pm
Steve:
Melanoma varies quite a bit from person to person. For some people it is very aggressive; for others it is slow growing. So, bottom line is that it is entirely possible it hasn't spread. The pathology report should help. They can look at other characteristics of the tumor to help see how aggressive it is. I suspect they will want to check to see if lymph nodes are involved. After all the tests you will know more.
Your anxiety is perfectly normal, but do what you can to keep it in check. Melanoma can have dire consequences, but many, many people have been where you are and are living perfectly normal, cancer free lives years later.
Please provide an update when you know more!
Tim–MRF
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- June 16, 2011 at 8:20 pm
You say doctor? Is it a dermatologist? Where are you being seen?
You may wish to get a copy of the pathology report and post it here so someone can better assist you. Yes though, among other things, based on whatever depth they may be able to come up with, there is still a very good chance it has not spread further. Also, if the tumor was transected (cut through) it should still state the type of melanoma it is. The most important thing though is the Breslow depth. You report may say something like the Breslow was at least so and so….or maybe something to that effect. Among other things, you may also wish to note if it was ulcerated or not, and the mitosis or rate of cell division.
You may also wish to discuss the possiblity of a SNB-sentinel node biopsy as well, but you mention they think it is a thin lesion? Normally, a SNB is done at the same time as the WLE as to not disturb the drainage pattern of the nodes. Perhaps in your case it was indeed thin an it was felt one was not needed.
In the future, when having a suspected melanoma removed, insist on at least a punch biopsy or excisional biopsy.
Good luck,
Michael 1B
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- June 16, 2011 at 8:20 pm
You say doctor? Is it a dermatologist? Where are you being seen?
You may wish to get a copy of the pathology report and post it here so someone can better assist you. Yes though, among other things, based on whatever depth they may be able to come up with, there is still a very good chance it has not spread further. Also, if the tumor was transected (cut through) it should still state the type of melanoma it is. The most important thing though is the Breslow depth. You report may say something like the Breslow was at least so and so….or maybe something to that effect. Among other things, you may also wish to note if it was ulcerated or not, and the mitosis or rate of cell division.
You may also wish to discuss the possiblity of a SNB-sentinel node biopsy as well, but you mention they think it is a thin lesion? Normally, a SNB is done at the same time as the WLE as to not disturb the drainage pattern of the nodes. Perhaps in your case it was indeed thin an it was felt one was not needed.
In the future, when having a suspected melanoma removed, insist on at least a punch biopsy or excisional biopsy.
Good luck,
Michael 1B
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- June 16, 2011 at 8:58 pm
Thanks Tim & Michael for your replies. Somehow just knowing there are people out there that I can talk to makes me feel better. I'm experiencing an unexpected phenomenon in that my friends and family are uncomfortable talking about it and I feel very alone. At the moment, the fear is overwhelming.
I'm a patient of Dermatology Associates of Atlanta. Yes, the doctor I mentioned is a dermatologist. He DID mention a depth of 0.6mm, but when I pressed him on how reliable that is, he said we would need the report from the excision to know for sure. The report will say if the margins were cleared and how deep the tumor goes, he said.
They're referring me to an oncologist who will check the lymph nodes, I guess. This is all new to me.
Regards, Steve
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- June 16, 2011 at 9:51 pm
The second excision is what is also called a WLE. The pathology report from that will help to further determine what needs to be done. Hopefully, the .60 mm Breslow you mentioned from the original biopsy will not be transected, but in all honesty, it sounds like it was transected since you are being referred to a oncologist to discuss a SNB.
Post both pathology reports when you get them, and the board will assist you from there..
Good luck,
Michael stage 1B .30 mm Breslow depth, not ulcerated and w/1 mitosis.
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- June 16, 2011 at 10:55 pm
They told me that they refer all melanoma patients to this particular specialist because at a minimum I will need frequent body scans. The nurse told me he could do a SNB if it is necessary, but the doctor never mentioned it. He just kept telling me it was very small and they probably got it in time. I hope he wasn't just putting up a front. I'll post the reports when I get them. Thanks, Michael.
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- June 16, 2011 at 10:55 pm
They told me that they refer all melanoma patients to this particular specialist because at a minimum I will need frequent body scans. The nurse told me he could do a SNB if it is necessary, but the doctor never mentioned it. He just kept telling me it was very small and they probably got it in time. I hope he wasn't just putting up a front. I'll post the reports when I get them. Thanks, Michael.
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- June 16, 2011 at 9:51 pm
The second excision is what is also called a WLE. The pathology report from that will help to further determine what needs to be done. Hopefully, the .60 mm Breslow you mentioned from the original biopsy will not be transected, but in all honesty, it sounds like it was transected since you are being referred to a oncologist to discuss a SNB.
Post both pathology reports when you get them, and the board will assist you from there..
Good luck,
Michael stage 1B .30 mm Breslow depth, not ulcerated and w/1 mitosis.
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- June 16, 2011 at 8:58 pm
Thanks Tim & Michael for your replies. Somehow just knowing there are people out there that I can talk to makes me feel better. I'm experiencing an unexpected phenomenon in that my friends and family are uncomfortable talking about it and I feel very alone. At the moment, the fear is overwhelming.
I'm a patient of Dermatology Associates of Atlanta. Yes, the doctor I mentioned is a dermatologist. He DID mention a depth of 0.6mm, but when I pressed him on how reliable that is, he said we would need the report from the excision to know for sure. The report will say if the margins were cleared and how deep the tumor goes, he said.
They're referring me to an oncologist who will check the lymph nodes, I guess. This is all new to me.
Regards, Steve
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- June 16, 2011 at 9:05 pm
Steve, sorry you've become a guest of the Hotel Melanoma. Scary times, I know, but hang in there and take it all one step at a time. I was diagnosed at Stage IIIc (it had spread to 14 lymph nodes) back in 2003, but I'm still here, healthy and showing no evidence of disease. My only other piece of advice is to make sure your oncologist is a melanoma specialist. Take care.
Rich
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- June 16, 2011 at 9:05 pm
Steve, sorry you've become a guest of the Hotel Melanoma. Scary times, I know, but hang in there and take it all one step at a time. I was diagnosed at Stage IIIc (it had spread to 14 lymph nodes) back in 2003, but I'm still here, healthy and showing no evidence of disease. My only other piece of advice is to make sure your oncologist is a melanoma specialist. Take care.
Rich
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- June 16, 2011 at 9:28 pm
Steve,
Definitely make sure any doctor you see from this point on relating to your melanoma, and that includes a dermatologist, is a melanoma specialist.
We all understand the fear that "phone call" brings. Tim's right though, get it under control. A little fear can be very motivating, a lot of fear (panic) can be paralyzing and debilitating. You need to be as clear headed as possible to make the decisions you may need to make…and to hear your doctors. To that end, from now on, when you see any onc, make sure you take someone close to you…wife, parent, etc…with you so they hear what you hear. Ask questions. Get the info you need to make those decisions.
Here's hoping you won't have any decisions to make except where to celebrate good news. And, anything is possible.
Look at it this way: either it hasn't spread or it has. If it hasn't…hallelujah…stay vigilant under the care of a dermatologist that knows melanoma. If it has spread, what you write does sound promising (stress "sound"), it is early, go on and get an early appt with a specialist and get the ball rolling to do what you need to do. You can do this. Whatever you have to do, you can do it. You've got a great support group here who can handle what family and friends can't. And we understand that too.
SIde note on that (and you'll get used to that too)…I developed lymphedema in my left arm & hand and wear a compression glove & sleeve full time. Strangers will ask if I've burned my arm…when I tell them why I actually wear the garments you can see it in their faces (strangers now) that they'd rather hear I was badly burned than have melanoma.
Lord, in Your mercy, guide Steve here and open the doors he needs opening. Praying it hasn't spread. Thank You. Amen.
Grace and peace,
Carol
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- June 16, 2011 at 9:28 pm
Steve,
Definitely make sure any doctor you see from this point on relating to your melanoma, and that includes a dermatologist, is a melanoma specialist.
We all understand the fear that "phone call" brings. Tim's right though, get it under control. A little fear can be very motivating, a lot of fear (panic) can be paralyzing and debilitating. You need to be as clear headed as possible to make the decisions you may need to make…and to hear your doctors. To that end, from now on, when you see any onc, make sure you take someone close to you…wife, parent, etc…with you so they hear what you hear. Ask questions. Get the info you need to make those decisions.
Here's hoping you won't have any decisions to make except where to celebrate good news. And, anything is possible.
Look at it this way: either it hasn't spread or it has. If it hasn't…hallelujah…stay vigilant under the care of a dermatologist that knows melanoma. If it has spread, what you write does sound promising (stress "sound"), it is early, go on and get an early appt with a specialist and get the ball rolling to do what you need to do. You can do this. Whatever you have to do, you can do it. You've got a great support group here who can handle what family and friends can't. And we understand that too.
SIde note on that (and you'll get used to that too)…I developed lymphedema in my left arm & hand and wear a compression glove & sleeve full time. Strangers will ask if I've burned my arm…when I tell them why I actually wear the garments you can see it in their faces (strangers now) that they'd rather hear I was badly burned than have melanoma.
Lord, in Your mercy, guide Steve here and open the doors he needs opening. Praying it hasn't spread. Thank You. Amen.
Grace and peace,
Carol
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- June 18, 2011 at 12:24 pm
Welcome doesn't quite seem to be the correct greeting to a new person on this board, but you get the idea. From my experience, here are two important things you need to do:
1. Get comfortable with being scared. Does that make any sense? Maybe scared is too strong a word, but scared carries a sense of urgency, seriousness, a call to action, it is something that can not be ignored, it is there in the front of your mind. Being scared is OK in my book. Being consumed by fear is not OK. I have had melanoma 5 times, 4 times in the last 4 years. Does it scare me? You bet! But what that really means is that I don't take it lightly and I don't let my team take it lightly. Which brings us to point #2.
2. You need to develop a team. Everyone on the team plays a different position. You are the forward; you are the point person. Noone else is able to see changes in or on your body quicker than you. Your family and very close friends are the backs; they support you, they are always on the field. Use the backs, they may feel uncomfortable talking with you at first, but they will get over it. Remember, the backs love you, they just don't know what to say. You need a center; centers get things going – a first rate dermatologist is who you want. Your center should do a full body scan every 6 months; she or he goes over your whole body looking for issues. The attack man is your oncologist or surgical oncologist. This team member is also the field captain who manages and directs all the other players – radiologists, (PET/CT, nuclear, MRI, operating room techs, and numerous other people you may or may not ever meet). Be comfotable with your team members, they will be with you for a long time. My team came together 13 years ago, we are still together even though my wife and I moved 150 miles to another state 8 years ago.
Be scared, be aware, be vigilent, but don't be afraid. I wish you well.
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- June 18, 2011 at 12:24 pm
Welcome doesn't quite seem to be the correct greeting to a new person on this board, but you get the idea. From my experience, here are two important things you need to do:
1. Get comfortable with being scared. Does that make any sense? Maybe scared is too strong a word, but scared carries a sense of urgency, seriousness, a call to action, it is something that can not be ignored, it is there in the front of your mind. Being scared is OK in my book. Being consumed by fear is not OK. I have had melanoma 5 times, 4 times in the last 4 years. Does it scare me? You bet! But what that really means is that I don't take it lightly and I don't let my team take it lightly. Which brings us to point #2.
2. You need to develop a team. Everyone on the team plays a different position. You are the forward; you are the point person. Noone else is able to see changes in or on your body quicker than you. Your family and very close friends are the backs; they support you, they are always on the field. Use the backs, they may feel uncomfortable talking with you at first, but they will get over it. Remember, the backs love you, they just don't know what to say. You need a center; centers get things going – a first rate dermatologist is who you want. Your center should do a full body scan every 6 months; she or he goes over your whole body looking for issues. The attack man is your oncologist or surgical oncologist. This team member is also the field captain who manages and directs all the other players – radiologists, (PET/CT, nuclear, MRI, operating room techs, and numerous other people you may or may not ever meet). Be comfotable with your team members, they will be with you for a long time. My team came together 13 years ago, we are still together even though my wife and I moved 150 miles to another state 8 years ago.
Be scared, be aware, be vigilent, but don't be afraid. I wish you well.
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Tagged: cutaneous melanoma
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