› Forums › General Melanoma Community › Newly Diagnosed – looking for advice and guidance.
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POW.
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- September 15, 2013 at 1:38 pm
I am new to this board, and have been reading it extensively for the last few days. I was first diagnosed with melanoma this past Friday. I am in the Dallas / Ft Worth area of Texas.
A brief history. Approximately 9 months ago I went to my dermatologist due to an odd growth on my back. While it turned out to be benign, they decided to biopsy 2 other moles. One came back benign, the other came back mild-mid atypical I believe. I had a followup after 3 months, and this past monday was my six month follow up. The doctor decide that one mole on my upper left back needed to come off, I thought nothing of it at the time, and actually forgot about it until I got the call on Friday and was told that I had Melanoma in situ, and that I neeed to wider excision to check margins.
After doing extensive reading, I do know that if you are going to have melanoma, in situ is the place to be. Of course this has also made me much more paranoid about whether my diagnosis is correct, what I should be doing to "be my own advocate", which I read about often here, and just generally what questions I should be asking and what I should be doing.
These past exams were not full body exams, they only examined me with my shirt off. Since my diagnoses, I have examined my entire body, and have found one spot on the back of my left leg that appears slightly suspicious to me. Fairly symmetrical, not raised, a bit smaller than a pencil eraser tip (if I hold it over the mole it cannot be seen,but does have brown coloring variations, and just looks a little different form the rest.
My wide excision is scheduled for Monday. Only odd thing about it is, due to scheduling of the office, my options were to schedule later in the week at my regular office, or go to their other office and have the procedure done tomorrow afternoon. Is there any reason that I would need to make sure that the same person who did the original biopsy performs the follow up procedure?
Aside from bringing up the other locations I find suspect at my appointment tomorrow, I am told that an appointment for a full body skin exam cannot be scheduled until the end of the month. Should I be pushing for it earlier than that? Should I be pushing for that to be done at my procedure tomorrow? (I am told they block out an hour)
I do not have my biopsy results, I was only given the news over the phone. But as posted, I was told it is Melanoma in situ. A question on this. Does this mean that during the biopsy, they were able to determine that there were clear borders around the biopsy itself? So essentially I should already have clear margins(the entire melanoma was removed), but the wider excision is to further test / ensure that they got it all?
Thank you so much for reading my long post and any answers and guidance you can provide.
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- September 15, 2013 at 9:49 pm
I understand where you are coming from. A diagnosis of melanoma in situ can be very scarey. But as you said, "if you are going to have melanoma, in situ is the place to be." All that needs to be done is a wide local excision (WLE) to make sure they get clean margins and you're done! In the vast majority of the cases (something like >95%) you will never see melanoma again.
As for the other spot on your leg, I have never heard of 2 primary melanoma lesions happening to the same person at the same time. Since you already have a MIS, the chances of this other one being melanoma, too, are vanishingly small. I would most certainly show it to the surgeon tomorrow, but you will probably be fine waiting for your whole body scan in 3 weeks. The thing to be most alert to (now and for any future lesions) is change– if it changes size or color or startes itching or bleeding, get it checked out by a dermatologist experienced in melanoma as soon as possible. It will still probably NOT be melanoma, but a changing mole is something to get checked out.
Two other things I would recommend: 1) always get copies of all your medical reports and get CDs of any imaging studies to keep for your own records–path reports, mammogram reports and scans, X-ray or CT reports and their scans– anything (I even insist on copies of blood tests from my annual physical). You can learn a lot by reading the reports and if you ever need to get a second opinion about any medical condition it can make everything much faster and easier if you have copies of everything. and 2) stop reading about melanoma on the Internet! All you will do is scare yourself silly with horror stories and misinformation. Get your WLE and the biopsy report from that to make sure the margins are clear and then forget about it. Take sensible precautions about sunscreen and hats, keep your immune system strong with a good diet and moderate exercise and you will be fine.
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- September 16, 2013 at 12:59 am
Thank you for your reply, it has really helped. I am 34 years old, so I definitely feel I am on the young side of this sort of thing. Additionally I don't have a family history of this sort of thing either, I also do not burn easily, and have never been the type to over expose myself to the sun regularly. Especially since my first brush with an atypical mole, I got much more serious about sunscreen this summer, though the damage could have already been done. I am generally a healthy person, eat fairly well, and am still active playing sports.
One thing I wonder is if I have a genetic abnormality, since I probably have over 100 moles, and in fact , I have a birth mark on my arm that is basicaly a circle of around 30 tiny moles. People always think I have dirt on my forearm. The size/look/height has never changed as far as I am aware (and I see it often because it is on my arm, not out of sight out of mind like my back).
I read your profile, and it looks like your brothers story (thank you for sharing his story by the way, and I am sorry for your loss) is exactly the kind of scenario I am afraid of. Though I guess I need to first get through my WLE and go from there. It does look like in the case of your brother the melanoma was there for several years, wereas I am thinking this one may have been caught fairly early due to my regular checkups over the past year. It looks like I was not keeping as careful enough watch as I should have been though, and did not notice if the MIS had changed over the past 6-9 months, or if it was new altogether. I have since become much more diligent with my skin inspections, and took a picture with an object for scale of the one on my leg that I am concerned about.
Thank you for your advice regarding record keeping, I will definitely ask for all of my records and images at my visit tomorrow.
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- September 16, 2013 at 3:05 am
Actually no, your case is not at all like my brother's. My brother's diagnosis of melanoma in situ was an error. The lesion was large with the classic signs of melanoma. Any idiot should have been able to tell that it was worse than melanoma in situ. Personally, I was surprised and relieved. I expected Stage II or III just from the gross appearance and the fact that it had been there for 2 years and was changing. But who am I to doubt a pathologist? You can well imagine the blistering letter I fired off the the Chief of Pathology at that medical center. But my brother, laid-back soul that he was, refused to even consider a malpratice suit.
So, yes, it's true that there are sometimes medical errors. But those are very rare and highly unlikely to happen to you. And my brother refused for 2 years to have that suspicious-looking lesion biopsied despite repeated requests by his dermatologist, so my brother was partly to blame, too. You weren't so stupid and stubborn.
Your case is more like my husband's. He noticed a freckle on his arm change color. He insisted on a biopsy when the dermatologist told him it was "nothing". It was melanoma in situ. He had a WLE and now, 20 years later, he has never had any hint of a recurrance. That is by far the most typical outcome of melanoma in situ.
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- September 16, 2013 at 3:12 am
By the way, if you have lots of moles you might want to message Janner. I think that she is in a clinical trial for people with multiple primary melanomas and I think she also has a lot of moles that she needs to be vigilant about. She may have some good advice and resources for you.
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- September 16, 2013 at 3:12 am
By the way, if you have lots of moles you might want to message Janner. I think that she is in a clinical trial for people with multiple primary melanomas and I think she also has a lot of moles that she needs to be vigilant about. She may have some good advice and resources for you.
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- September 16, 2013 at 3:12 am
By the way, if you have lots of moles you might want to message Janner. I think that she is in a clinical trial for people with multiple primary melanomas and I think she also has a lot of moles that she needs to be vigilant about. She may have some good advice and resources for you.
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- September 16, 2013 at 3:05 am
Actually no, your case is not at all like my brother's. My brother's diagnosis of melanoma in situ was an error. The lesion was large with the classic signs of melanoma. Any idiot should have been able to tell that it was worse than melanoma in situ. Personally, I was surprised and relieved. I expected Stage II or III just from the gross appearance and the fact that it had been there for 2 years and was changing. But who am I to doubt a pathologist? You can well imagine the blistering letter I fired off the the Chief of Pathology at that medical center. But my brother, laid-back soul that he was, refused to even consider a malpratice suit.
So, yes, it's true that there are sometimes medical errors. But those are very rare and highly unlikely to happen to you. And my brother refused for 2 years to have that suspicious-looking lesion biopsied despite repeated requests by his dermatologist, so my brother was partly to blame, too. You weren't so stupid and stubborn.
Your case is more like my husband's. He noticed a freckle on his arm change color. He insisted on a biopsy when the dermatologist told him it was "nothing". It was melanoma in situ. He had a WLE and now, 20 years later, he has never had any hint of a recurrance. That is by far the most typical outcome of melanoma in situ.
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- September 16, 2013 at 3:05 am
Actually no, your case is not at all like my brother's. My brother's diagnosis of melanoma in situ was an error. The lesion was large with the classic signs of melanoma. Any idiot should have been able to tell that it was worse than melanoma in situ. Personally, I was surprised and relieved. I expected Stage II or III just from the gross appearance and the fact that it had been there for 2 years and was changing. But who am I to doubt a pathologist? You can well imagine the blistering letter I fired off the the Chief of Pathology at that medical center. But my brother, laid-back soul that he was, refused to even consider a malpratice suit.
So, yes, it's true that there are sometimes medical errors. But those are very rare and highly unlikely to happen to you. And my brother refused for 2 years to have that suspicious-looking lesion biopsied despite repeated requests by his dermatologist, so my brother was partly to blame, too. You weren't so stupid and stubborn.
Your case is more like my husband's. He noticed a freckle on his arm change color. He insisted on a biopsy when the dermatologist told him it was "nothing". It was melanoma in situ. He had a WLE and now, 20 years later, he has never had any hint of a recurrance. That is by far the most typical outcome of melanoma in situ.
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- September 16, 2013 at 12:59 am
Thank you for your reply, it has really helped. I am 34 years old, so I definitely feel I am on the young side of this sort of thing. Additionally I don't have a family history of this sort of thing either, I also do not burn easily, and have never been the type to over expose myself to the sun regularly. Especially since my first brush with an atypical mole, I got much more serious about sunscreen this summer, though the damage could have already been done. I am generally a healthy person, eat fairly well, and am still active playing sports.
One thing I wonder is if I have a genetic abnormality, since I probably have over 100 moles, and in fact , I have a birth mark on my arm that is basicaly a circle of around 30 tiny moles. People always think I have dirt on my forearm. The size/look/height has never changed as far as I am aware (and I see it often because it is on my arm, not out of sight out of mind like my back).
I read your profile, and it looks like your brothers story (thank you for sharing his story by the way, and I am sorry for your loss) is exactly the kind of scenario I am afraid of. Though I guess I need to first get through my WLE and go from there. It does look like in the case of your brother the melanoma was there for several years, wereas I am thinking this one may have been caught fairly early due to my regular checkups over the past year. It looks like I was not keeping as careful enough watch as I should have been though, and did not notice if the MIS had changed over the past 6-9 months, or if it was new altogether. I have since become much more diligent with my skin inspections, and took a picture with an object for scale of the one on my leg that I am concerned about.
Thank you for your advice regarding record keeping, I will definitely ask for all of my records and images at my visit tomorrow.
-
- September 16, 2013 at 12:59 am
Thank you for your reply, it has really helped. I am 34 years old, so I definitely feel I am on the young side of this sort of thing. Additionally I don't have a family history of this sort of thing either, I also do not burn easily, and have never been the type to over expose myself to the sun regularly. Especially since my first brush with an atypical mole, I got much more serious about sunscreen this summer, though the damage could have already been done. I am generally a healthy person, eat fairly well, and am still active playing sports.
One thing I wonder is if I have a genetic abnormality, since I probably have over 100 moles, and in fact , I have a birth mark on my arm that is basicaly a circle of around 30 tiny moles. People always think I have dirt on my forearm. The size/look/height has never changed as far as I am aware (and I see it often because it is on my arm, not out of sight out of mind like my back).
I read your profile, and it looks like your brothers story (thank you for sharing his story by the way, and I am sorry for your loss) is exactly the kind of scenario I am afraid of. Though I guess I need to first get through my WLE and go from there. It does look like in the case of your brother the melanoma was there for several years, wereas I am thinking this one may have been caught fairly early due to my regular checkups over the past year. It looks like I was not keeping as careful enough watch as I should have been though, and did not notice if the MIS had changed over the past 6-9 months, or if it was new altogether. I have since become much more diligent with my skin inspections, and took a picture with an object for scale of the one on my leg that I am concerned about.
Thank you for your advice regarding record keeping, I will definitely ask for all of my records and images at my visit tomorrow.
-
- September 17, 2013 at 5:50 pm
I had my WLE yesterday afternoon, as well as a mole on my leg that I requested to be checked, doctor said it looked like nothing, but if it would make me feel more comfortable she would biopsy. Didn't feel bad yesterday afternoon, but in the middle of the night things got much more uncomfortable trying to sleep, and working and driving is much more irritating today, but overall not a huge deal. I think it is the discomfort combined with the anxiety that is making everything overall seem bad. I am pretty anxious about my results, and am told I will likely not hear till Monday, but hopefully Friday.
I do have a copy of my report, and had planned to post it here, but of course forgot it at home. I will post it tonight. I had the operating doctor translate the report to me in plain english, but I am hoping to get a "second reading" from the fine group here on these boards.
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- September 18, 2013 at 10:12 pm
I received my results today. The WLE came back clear, and the mole on my leg came back mild atypia. I will have to get a copy of those reports. I had another mole that came back a mild atypia, so I am not suprised, but just need to watch the area to see if it comes back. My other mild atypia that was shaved never came back either.
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- September 18, 2013 at 10:12 pm
I received my results today. The WLE came back clear, and the mole on my leg came back mild atypia. I will have to get a copy of those reports. I had another mole that came back a mild atypia, so I am not suprised, but just need to watch the area to see if it comes back. My other mild atypia that was shaved never came back either.
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- September 18, 2013 at 10:12 pm
I received my results today. The WLE came back clear, and the mole on my leg came back mild atypia. I will have to get a copy of those reports. I had another mole that came back a mild atypia, so I am not suprised, but just need to watch the area to see if it comes back. My other mild atypia that was shaved never came back either.
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- September 19, 2013 at 1:40 am
Excellent! That is very good news! Thank you for taking the time to share it with us.
Since you do have a lot of moles, you might consider getting them all photographed by a dermatologist in a process I think they call "mole mapping". That way the derm can immediately determine if any moles have changed from your prior visit. Again, I think that Janner can tell you more about that.
Now go away and enjoy life and don't think about melanoma again for at least a couple of months!
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- September 19, 2013 at 1:40 am
Excellent! That is very good news! Thank you for taking the time to share it with us.
Since you do have a lot of moles, you might consider getting them all photographed by a dermatologist in a process I think they call "mole mapping". That way the derm can immediately determine if any moles have changed from your prior visit. Again, I think that Janner can tell you more about that.
Now go away and enjoy life and don't think about melanoma again for at least a couple of months!
-
- September 19, 2013 at 1:40 am
Excellent! That is very good news! Thank you for taking the time to share it with us.
Since you do have a lot of moles, you might consider getting them all photographed by a dermatologist in a process I think they call "mole mapping". That way the derm can immediately determine if any moles have changed from your prior visit. Again, I think that Janner can tell you more about that.
Now go away and enjoy life and don't think about melanoma again for at least a couple of months!
-
- September 17, 2013 at 5:50 pm
I had my WLE yesterday afternoon, as well as a mole on my leg that I requested to be checked, doctor said it looked like nothing, but if it would make me feel more comfortable she would biopsy. Didn't feel bad yesterday afternoon, but in the middle of the night things got much more uncomfortable trying to sleep, and working and driving is much more irritating today, but overall not a huge deal. I think it is the discomfort combined with the anxiety that is making everything overall seem bad. I am pretty anxious about my results, and am told I will likely not hear till Monday, but hopefully Friday.
I do have a copy of my report, and had planned to post it here, but of course forgot it at home. I will post it tonight. I had the operating doctor translate the report to me in plain english, but I am hoping to get a "second reading" from the fine group here on these boards.
-
- September 17, 2013 at 5:50 pm
I had my WLE yesterday afternoon, as well as a mole on my leg that I requested to be checked, doctor said it looked like nothing, but if it would make me feel more comfortable she would biopsy. Didn't feel bad yesterday afternoon, but in the middle of the night things got much more uncomfortable trying to sleep, and working and driving is much more irritating today, but overall not a huge deal. I think it is the discomfort combined with the anxiety that is making everything overall seem bad. I am pretty anxious about my results, and am told I will likely not hear till Monday, but hopefully Friday.
I do have a copy of my report, and had planned to post it here, but of course forgot it at home. I will post it tonight. I had the operating doctor translate the report to me in plain english, but I am hoping to get a "second reading" from the fine group here on these boards.
-
- September 15, 2013 at 9:49 pm
I understand where you are coming from. A diagnosis of melanoma in situ can be very scarey. But as you said, "if you are going to have melanoma, in situ is the place to be." All that needs to be done is a wide local excision (WLE) to make sure they get clean margins and you're done! In the vast majority of the cases (something like >95%) you will never see melanoma again.
As for the other spot on your leg, I have never heard of 2 primary melanoma lesions happening to the same person at the same time. Since you already have a MIS, the chances of this other one being melanoma, too, are vanishingly small. I would most certainly show it to the surgeon tomorrow, but you will probably be fine waiting for your whole body scan in 3 weeks. The thing to be most alert to (now and for any future lesions) is change– if it changes size or color or startes itching or bleeding, get it checked out by a dermatologist experienced in melanoma as soon as possible. It will still probably NOT be melanoma, but a changing mole is something to get checked out.
Two other things I would recommend: 1) always get copies of all your medical reports and get CDs of any imaging studies to keep for your own records–path reports, mammogram reports and scans, X-ray or CT reports and their scans– anything (I even insist on copies of blood tests from my annual physical). You can learn a lot by reading the reports and if you ever need to get a second opinion about any medical condition it can make everything much faster and easier if you have copies of everything. and 2) stop reading about melanoma on the Internet! All you will do is scare yourself silly with horror stories and misinformation. Get your WLE and the biopsy report from that to make sure the margins are clear and then forget about it. Take sensible precautions about sunscreen and hats, keep your immune system strong with a good diet and moderate exercise and you will be fine.
-
- September 15, 2013 at 9:49 pm
I understand where you are coming from. A diagnosis of melanoma in situ can be very scarey. But as you said, "if you are going to have melanoma, in situ is the place to be." All that needs to be done is a wide local excision (WLE) to make sure they get clean margins and you're done! In the vast majority of the cases (something like >95%) you will never see melanoma again.
As for the other spot on your leg, I have never heard of 2 primary melanoma lesions happening to the same person at the same time. Since you already have a MIS, the chances of this other one being melanoma, too, are vanishingly small. I would most certainly show it to the surgeon tomorrow, but you will probably be fine waiting for your whole body scan in 3 weeks. The thing to be most alert to (now and for any future lesions) is change– if it changes size or color or startes itching or bleeding, get it checked out by a dermatologist experienced in melanoma as soon as possible. It will still probably NOT be melanoma, but a changing mole is something to get checked out.
Two other things I would recommend: 1) always get copies of all your medical reports and get CDs of any imaging studies to keep for your own records–path reports, mammogram reports and scans, X-ray or CT reports and their scans– anything (I even insist on copies of blood tests from my annual physical). You can learn a lot by reading the reports and if you ever need to get a second opinion about any medical condition it can make everything much faster and easier if you have copies of everything. and 2) stop reading about melanoma on the Internet! All you will do is scare yourself silly with horror stories and misinformation. Get your WLE and the biopsy report from that to make sure the margins are clear and then forget about it. Take sensible precautions about sunscreen and hats, keep your immune system strong with a good diet and moderate exercise and you will be fine.
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Tagged: cutaneous melanoma
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