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scared of the unknown

Forums Cutaneous Melanoma Community scared of the unknown

  • Post
    kellie1979
    Participant

    I went to a dermatologist for a spot on my leg that was hurting….luckily it was only a cyst.  However, she noticed that one of my moles was concerning so she removed it and took a quick look at my back and removed two more.  I am only 31 and never even thought that I needed to worry about my moles yet.  They came back abnormal, I went in for what I thought was a full body check.  The PA did NOT check my whole body (I wish I had known at that time what a full body check was supposed to be) she removed 5 more, 3 from my back, one from my stomach and another one from my l

    I went to a dermatologist for a spot on my leg that was hurting….luckily it was only a cyst.  However, she noticed that one of my moles was concerning so she removed it and took a quick look at my back and removed two more.  I am only 31 and never even thought that I needed to worry about my moles yet.  They came back abnormal, I went in for what I thought was a full body check.  The PA did NOT check my whole body (I wish I had known at that time what a full body check was supposed to be) she removed 5 more, 3 from my back, one from my stomach and another one from my leg.  Four of those came back abnormal, the other one the doctor sent back to confirm that to him it appears to be Melanoma.  I have since met with a cancer genetists who thinks I need to be tested for Dysplastic Nevi Syndrome due to my family history of cancer and the amount of moles that I have.

    Well anyways, it has been over three weeks since I found out that it may be Melanoma.  Does it always take this long to find out?  I am trying not to worry too much but I seriously have not been sleeping well at all and am about at my breaking point.  Many people in my life do not understand why I am concerned as most of them do not understand there is a difference between Melanoma and the other types of skin cancer that are not as threatening.

    I already know that once my pathology comes back (hopefully tomorrow) I am going to go to a different dermatologist as I keep finding moles that look similar to the ones that were removed.  And I don't know if I am just paranoid now but I swear everytime I look in the mirror I find a new mole that I didn't know I had.  I am also worried about my daughter, she is 7 and has had several moles appear lately.  Is this normal or should I be worried about what this means for her?

    I am sorry for the rambling, I just don't know what to expect and am not finding much support in my personal life.

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  • Replies
      lhaley
      Participant

      Kellie,

      What you are feeling is normal!  I have dysplastic nevi syndrome. I was diagnosed with it many years ago. Basically it means that you have over 150 moles (I believe that number is correct or near that) and that they are irregular shape and color.  If you do get diagnosed with this you really should think of having either mole mapping done or some really good pictures.

      My pictures were done at the cutaneous melanoma center at U of Penn over 20 years ago.  They put little tape measures next to the moles and then took pictures – close up and whole body. It's a great way to watch for change.  Now that everyone has digital cameras that would be an easier way to keep a check.  Last time at the derm he took one that he was going to watch.

      The most important thing is to watch for change. Moles can be funny looking and be fine.  Have you called the derms office?  3 weeks does seem to be a long time.  Sometimes in the paper work shuffle,  lab reports can be put to the side. I'm not saying that's right, it's not. But you have to take action and call. You might want to even show up if you can't get a straight answer. 

      If the pathology comes back as melanoma make sure to ask for a copy of the pathology report. Type the findings and people on this board can help explain.  Make sure and have the dermatologist explain also! 

      Hope you hear tomorrow! Waiting is so hard,

      Linda

      Stage IV  NED almost 4 weeks!

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        kellie1979
        Participant

        Linda,

        Thank you for replying back to me.  I called the office Monday, results werent back yet, called again today…still not back.  I am beginning to wonder if they know what its like to have someone tell you that they think you have Melanoma, but hey you need to wait weeks upon weeks to know for sure.  The cancer genetists (I know I am spelling that wrong) told me I need to go to a Dermatologist who will do an accurate full body check and measure the moles.  Can I ask you what NED means? When you were first diagnosed with Melanoma…what was the next steps? How do they assure that it hasn't spread to anywhere else?  Thank you again for reading my rambling

        Kellie

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        lhaley
        Participant

        NED means No evidence of disease.  I am stage IV and have had recurrances in several places. I did do one year of gmcsf but it has been back 3 times since then.  In my case we know it's systemic but thankgoodness seems tobe showing up one tumor or two at a time and surgery has been my treatment.

        When I was first diagnosed it was in1979. A family Dr. spotted the mole, removed it and did the wide excision. I would never have let a gp do that type of surgery again. I didn't know better.  I was stage 1A. I didn't even find out that I had been staged until I got my records years later!!   In 87 I had 3 more moles. Then I went to a melanoma specialist.  I saw a dermatologist every 3 months. Had chest x-rays but they later stopped that saying that they had decided that it wasn't really a diagnostic tool that was helpful.  In 06 I discovered my recurrance myself by feeling a lump on my breast next to my original incision. 

        Hopefully you will find that if it is melanoma it will be very thin and you will just be followed by a dermatologist for future moles that have changed.   Do you live in an area where there is a melanoma specialist?  If you are stage 1 then you will be put on watch and wait.  They will not do any tests. I could give you all of the if's and thens but the best thing would be to wait and see what the results bring.

        This board can be scary while waiting. Do realize that while there are a few that are stage 1 or insitu (stage 0), most on this board are stage 3 and 4.  Also, this is so important. If your mole ends up being malignant and they give you a Clarks level, that is not a stage!!!  Do not let yourself hear that you have a Clarks level 4 and you flip out!! That's a totally different thing. Most reports come back with a Breslow depth and do not use Clarks levels anymore, but some reports will have it.

        Do post again even if everything is fine!!

        Linda

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        kellie1979
        Participant

        I live in Lincoln, NE and don't know of any Melanoma experts necessarilly.  The cancer genetists is out of Omaha and she recommended I see a dermatologist  therethat she has worked with in the past on people who have Dysplastic Nevi Syndrome.  I am thinking that once I get my pathology reports back I will make an appointment with that dr and let him handle it.  I am hoping for the best and will let you know what I find out (hopefully tomorrow!!)

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        SusanE
        Participant

        Hi Kellie. We live in Hastings. We see Dr Edibaldo Silva at UNMC. He is our surgical oncologist. We see Dr Ralph Hauke with Nebraska Cancer Specialists at Methodist most often as our medical oncologist. We love them both.

        Take care,

        Susan wife of Jerry Stage III

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        SusanE
        Participant

        Hi Kellie. We live in Hastings. We see Dr Edibaldo Silva at UNMC. He is our surgical oncologist. We see Dr Ralph Hauke with Nebraska Cancer Specialists at Methodist most often as our medical oncologist. We love them both.

        Take care,

        Susan wife of Jerry Stage III

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        kellie1979
        Participant

        I live in Lincoln, NE and don't know of any Melanoma experts necessarilly.  The cancer genetists is out of Omaha and she recommended I see a dermatologist  therethat she has worked with in the past on people who have Dysplastic Nevi Syndrome.  I am thinking that once I get my pathology reports back I will make an appointment with that dr and let him handle it.  I am hoping for the best and will let you know what I find out (hopefully tomorrow!!)

        Loading spinner
        lhaley
        Participant

        NED means No evidence of disease.  I am stage IV and have had recurrances in several places. I did do one year of gmcsf but it has been back 3 times since then.  In my case we know it's systemic but thankgoodness seems tobe showing up one tumor or two at a time and surgery has been my treatment.

        When I was first diagnosed it was in1979. A family Dr. spotted the mole, removed it and did the wide excision. I would never have let a gp do that type of surgery again. I didn't know better.  I was stage 1A. I didn't even find out that I had been staged until I got my records years later!!   In 87 I had 3 more moles. Then I went to a melanoma specialist.  I saw a dermatologist every 3 months. Had chest x-rays but they later stopped that saying that they had decided that it wasn't really a diagnostic tool that was helpful.  In 06 I discovered my recurrance myself by feeling a lump on my breast next to my original incision. 

        Hopefully you will find that if it is melanoma it will be very thin and you will just be followed by a dermatologist for future moles that have changed.   Do you live in an area where there is a melanoma specialist?  If you are stage 1 then you will be put on watch and wait.  They will not do any tests. I could give you all of the if's and thens but the best thing would be to wait and see what the results bring.

        This board can be scary while waiting. Do realize that while there are a few that are stage 1 or insitu (stage 0), most on this board are stage 3 and 4.  Also, this is so important. If your mole ends up being malignant and they give you a Clarks level, that is not a stage!!!  Do not let yourself hear that you have a Clarks level 4 and you flip out!! That's a totally different thing. Most reports come back with a Breslow depth and do not use Clarks levels anymore, but some reports will have it.

        Do post again even if everything is fine!!

        Linda

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        Janis B.
        Participant

        I, too waited 3 lo-o-o-ong weeks to get back my initial report for a suspicious mole. It was an agonizing time, as I tried to be patient.  As it turned out, the results (yes, it was melanoma) had been in for two weeks and seemed to have been lost in a paper shuffle.  Needless to say, I did NOT return to that clinic.  I got the pathology report and sent it to MD Anderson the next day.  I generally have received my pathology reports from them within a week and a half.  I personally think that 3 weeks is too long and in my case, I wish I'd started screaming at them after 2.

        I very much hope that your tests are negative.  Take care, keep asking questions and be persistent!

        (NED means no evidence of disease – it took me a while to learn what all letters mean – maybe we should publish a manual)

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        Brandi
        Participant

        I waited about 3 weeks for my results too. The bad part was no one thought mine were mel so when they didn't call I figured they must have been nothing. Then all the sudden they were calling wanting me to come in that day! I was there til 9p getting the news. It really stinks waiting around but that's healthcare it's like the army hurry up and wait!

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        Brandi
        Participant

        I waited about 3 weeks for my results too. The bad part was no one thought mine were mel so when they didn't call I figured they must have been nothing. Then all the sudden they were calling wanting me to come in that day! I was there til 9p getting the news. It really stinks waiting around but that's healthcare it's like the army hurry up and wait!

        Loading spinner
        Janis B.
        Participant

        I, too waited 3 lo-o-o-ong weeks to get back my initial report for a suspicious mole. It was an agonizing time, as I tried to be patient.  As it turned out, the results (yes, it was melanoma) had been in for two weeks and seemed to have been lost in a paper shuffle.  Needless to say, I did NOT return to that clinic.  I got the pathology report and sent it to MD Anderson the next day.  I generally have received my pathology reports from them within a week and a half.  I personally think that 3 weeks is too long and in my case, I wish I'd started screaming at them after 2.

        I very much hope that your tests are negative.  Take care, keep asking questions and be persistent!

        (NED means no evidence of disease – it took me a while to learn what all letters mean – maybe we should publish a manual)

        Loading spinner
        kellie1979
        Participant

        Linda,

        Thank you for replying back to me.  I called the office Monday, results werent back yet, called again today…still not back.  I am beginning to wonder if they know what its like to have someone tell you that they think you have Melanoma, but hey you need to wait weeks upon weeks to know for sure.  The cancer genetists (I know I am spelling that wrong) told me I need to go to a Dermatologist who will do an accurate full body check and measure the moles.  Can I ask you what NED means? When you were first diagnosed with Melanoma…what was the next steps? How do they assure that it hasn't spread to anywhere else?  Thank you again for reading my rambling

        Kellie

        Loading spinner
      lhaley
      Participant

      Kellie,

      What you are feeling is normal!  I have dysplastic nevi syndrome. I was diagnosed with it many years ago. Basically it means that you have over 150 moles (I believe that number is correct or near that) and that they are irregular shape and color.  If you do get diagnosed with this you really should think of having either mole mapping done or some really good pictures.

      My pictures were done at the cutaneous melanoma center at U of Penn over 20 years ago.  They put little tape measures next to the moles and then took pictures – close up and whole body. It's a great way to watch for change.  Now that everyone has digital cameras that would be an easier way to keep a check.  Last time at the derm he took one that he was going to watch.

      The most important thing is to watch for change. Moles can be funny looking and be fine.  Have you called the derms office?  3 weeks does seem to be a long time.  Sometimes in the paper work shuffle,  lab reports can be put to the side. I'm not saying that's right, it's not. But you have to take action and call. You might want to even show up if you can't get a straight answer. 

      If the pathology comes back as melanoma make sure to ask for a copy of the pathology report. Type the findings and people on this board can help explain.  Make sure and have the dermatologist explain also! 

      Hope you hear tomorrow! Waiting is so hard,

      Linda

      Stage IV  NED almost 4 weeks!

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