What to do, what to do.
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What to do, what to do.

› Forums › General Melanoma Community › What to do, what to do.

  • Post
    • November 21, 2016 at 3:36 am
    CowWhat
    Participant
    Hi all. Thank you in advance for your forum contributions and caring advice. I’ve browsed this forum for a long time as i am extremely high risk for Mel.

    First a back story:

    I waa diagnosed 2 years ago with a very rare cancer syndrome called Cowden’s
    https://ghr.nlm.nih.gov/condition/cowden-syndrome

    Along with the 2 other cancers ive had(thyroid + kidney) ive also had a phylloides breast tumor (even rarer).

    I am covered head to toe in moles and have had over 30 removed. A few were dysplastic nevi, but none of the docs were concerned. This past Feb i had a full skin check at the cancer agency with 3 removed. All benign.

    Anywho. Fast forward to last week when my new GP was looking me over and in a worried tone said i needed 4 removed asap. I came back 3 days later for 1 on my back and 1 on neck to be chopped.

    The other 2 are on my legs and are not as urgent.

    Ok, after stitching me he said to prepare myself for a WLE as the back mole was very dark, irregular and had signs of regression. I couldnt even see this mole as it was centered under my bra. It was not there in Feb.

    To add….i have a 5cm breast lump jyst above where the Phylloides was removed. It cannot be seen on imaging not even MRI. Every doc has felt it tho. Only this GP is seemingly panicked and has ordered a biopsy soon.

    Here in lies the rub: im not sure i want the WLE. My lifetime risk of MM is about 60%-basically inevitable. Breast CA is 85÷. Im spinning my wheels.

    Ive had 8 surgeries since 2012. Not too interested in more.

    So…help me decide if i should do the WLE if needed. It is unlikely to be scheduled before the new year anyway and we are still waiting on the bio pathology.

    Thank you.

Viewing 5 reply threads
  • Replies
      • November 21, 2016 at 6:15 am
      Janner
      Participant

      Wait for the path report, until then all is speculation.  When you know what it is, you'll know how important it is to get wider margins.  Just so you know, a study done a while back had GP/PCP misdiagnosing melanoma 73% of the time.  Not saying your doc isn't good, just saying this isn't something they see daily like derm's do.  Hang in there for now…

      • November 21, 2016 at 6:15 am
      Janner
      Participant

      Wait for the path report, until then all is speculation.  When you know what it is, you'll know how important it is to get wider margins.  Just so you know, a study done a while back had GP/PCP misdiagnosing melanoma 73% of the time.  Not saying your doc isn't good, just saying this isn't something they see daily like derm's do.  Hang in there for now…

        • November 21, 2016 at 8:23 am
        CowWhat
        Participant
        Thanks 🙂

        The interesting part about my dr is that he was an onc surgeon before slowing down and switching to family medicine. He is well versed in the Cowdens.

        I suppose im simply tired. Of tests, surgeries, stitches scans etc. I dont want to do it anymore. Its a game of whack a mole, and i want to stop.

        Hopefully the path will be available on the 29th when stitches come out.

        • November 21, 2016 at 8:23 am
        CowWhat
        Participant
        Thanks 🙂

        The interesting part about my dr is that he was an onc surgeon before slowing down and switching to family medicine. He is well versed in the Cowdens.

        I suppose im simply tired. Of tests, surgeries, stitches scans etc. I dont want to do it anymore. Its a game of whack a mole, and i want to stop.

        Hopefully the path will be available on the 29th when stitches come out.

        • November 21, 2016 at 10:44 am
        debwray
        Participant

        Hi,

        Not worth jumping the gun with decisions. Totally understand the sick of surgeries bit.

        Even with you probability for mm in your lifetime getting rid of it has got got to be worth doing if that is the choice that presents.. But I think you  know that…otherwise all the whack a mole biopsies were pointless…if this is positive this is the omne that counts. 

        Protest , vent and rant here if it helps..but we will all say take the wle if recommended.

        Hope its another false alarm

        Deb

         

         

         

        • November 21, 2016 at 10:44 am
        debwray
        Participant

        Hi,

        Not worth jumping the gun with decisions. Totally understand the sick of surgeries bit.

        Even with you probability for mm in your lifetime getting rid of it has got got to be worth doing if that is the choice that presents.. But I think you  know that…otherwise all the whack a mole biopsies were pointless…if this is positive this is the omne that counts. 

        Protest , vent and rant here if it helps..but we will all say take the wle if recommended.

        Hope its another false alarm

        Deb

         

         

         

        • November 21, 2016 at 10:44 am
        debwray
        Participant

        Hi,

        Not worth jumping the gun with decisions. Totally understand the sick of surgeries bit.

        Even with you probability for mm in your lifetime getting rid of it has got got to be worth doing if that is the choice that presents.. But I think you  know that…otherwise all the whack a mole biopsies were pointless…if this is positive this is the omne that counts. 

        Protest , vent and rant here if it helps..but we will all say take the wle if recommended.

        Hope its another false alarm

        Deb

         

         

         

        • November 21, 2016 at 4:28 pm
        Janner
        Participant

        Do you have baseline photos of all your moles?  Make your doc work with you.  Get pictures and biopsy things that CHANGE!!!  Then you're not guessing but you are biopsying things that show legitimate suspicious behavior.  Mole Mapping was designed for people with lots of moles — you biopsy things that change and let stable moles just hang out and be stable.  Designed to cut down on biopsies for those with lots of funky looking moles.

        • November 21, 2016 at 4:28 pm
        Janner
        Participant

        Do you have baseline photos of all your moles?  Make your doc work with you.  Get pictures and biopsy things that CHANGE!!!  Then you're not guessing but you are biopsying things that show legitimate suspicious behavior.  Mole Mapping was designed for people with lots of moles — you biopsy things that change and let stable moles just hang out and be stable.  Designed to cut down on biopsies for those with lots of funky looking moles.

        • November 22, 2016 at 12:23 am
        CowWhat
        Participant
        He said he has ordered that new fangled thing to use on his phone that tracks moles and next visit he will scan me.

        Im in pain from my neck/collarbone stitches. Aches constantly and is very bruised. Arg

        • November 22, 2016 at 12:23 am
        CowWhat
        Participant
        He said he has ordered that new fangled thing to use on his phone that tracks moles and next visit he will scan me.

        Im in pain from my neck/collarbone stitches. Aches constantly and is very bruised. Arg

        • November 22, 2016 at 12:23 am
        CowWhat
        Participant
        He said he has ordered that new fangled thing to use on his phone that tracks moles and next visit he will scan me.

        Im in pain from my neck/collarbone stitches. Aches constantly and is very bruised. Arg

        • November 21, 2016 at 4:28 pm
        Janner
        Participant

        Do you have baseline photos of all your moles?  Make your doc work with you.  Get pictures and biopsy things that CHANGE!!!  Then you're not guessing but you are biopsying things that show legitimate suspicious behavior.  Mole Mapping was designed for people with lots of moles — you biopsy things that change and let stable moles just hang out and be stable.  Designed to cut down on biopsies for those with lots of funky looking moles.

        • November 21, 2016 at 8:23 am
        CowWhat
        Participant
        Thanks 🙂

        The interesting part about my dr is that he was an onc surgeon before slowing down and switching to family medicine. He is well versed in the Cowdens.

        I suppose im simply tired. Of tests, surgeries, stitches scans etc. I dont want to do it anymore. Its a game of whack a mole, and i want to stop.

        Hopefully the path will be available on the 29th when stitches come out.

      • November 21, 2016 at 6:15 am
      Janner
      Participant

      Wait for the path report, until then all is speculation.  When you know what it is, you'll know how important it is to get wider margins.  Just so you know, a study done a while back had GP/PCP misdiagnosing melanoma 73% of the time.  Not saying your doc isn't good, just saying this isn't something they see daily like derm's do.  Hang in there for now…

      • November 26, 2016 at 3:21 am
      CowWhat
      Participant
      Update:

      Got my pathology today.

      Both removed moles were Junctional nevi. Luckiky completely excised and im glad they were removed before turning cancerous.

      I still have 2 more to get taken off bith thighs but will wait until after the holidays.

      • November 26, 2016 at 3:21 am
      CowWhat
      Participant
      Update:

      Got my pathology today.

      Both removed moles were Junctional nevi. Luckiky completely excised and im glad they were removed before turning cancerous.

      I still have 2 more to get taken off bith thighs but will wait until after the holidays.

      • November 26, 2016 at 3:21 am
      CowWhat
      Participant
      Update:

      Got my pathology today.

      Both removed moles were Junctional nevi. Luckiky completely excised and im glad they were removed before turning cancerous.

      I still have 2 more to get taken off bith thighs but will wait until after the holidays.

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