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freaking out again

Forums General Melanoma Community freaking out again

  • Post
    boot2aboot
    Participant

    Hello Everyone,

    I was doing OK with my initial diagnosis of metastic melanoma until i went to see the new ONC…she told me pathology isn't 100percent sure on melanoma diagnosis and leaning towards something called clear cell sarcoma or soft tissue melanoma….so what did i do? yup…researched on the internet…and now, i am in a PANIC…there are NO GOOD EXISTING TREATMENTS FOR THIS…rare, rare, rare…poor prognosis…

    Hello Everyone,

    I was doing OK with my initial diagnosis of metastic melanoma until i went to see the new ONC…she told me pathology isn't 100percent sure on melanoma diagnosis and leaning towards something called clear cell sarcoma or soft tissue melanoma….so what did i do? yup…researched on the internet…and now, i am in a PANIC…there are NO GOOD EXISTING TREATMENTS FOR THIS…rare, rare, rare…poor prognosis…

    no primary site can be found…no pet scan after ct/bone scan mri ordered and my armpit lymph nodes are to be hacked out Thursday…is this TYPICAL????

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  • Replies
      Carol Taylor
      Participant

      OK 2B, refresh my memory please, is this new onc you just saw a melanoma specialist? If not, that's what you need to do is get yourself to a specialist.

      If she is a specialist, keep in mind that "panic" is not your friend and neither is going on a feeding frenzy online.  Deep breath friend.

      There's something you need to understand, 100% doesn't exist in the world of medicine (or really anywhere else that I'm aware of). We're all human and our bodies are all different. Mistakes happen, misreads happen, misdiagnoses happen, Not only are our bodies different in ways and imperfect but all the sciences that deal with our bodies are imperfect.  Even when you get your diagnosis, and the dr is sure what she's working on, she can't predict how YOU specifically will react to any treatment.

      Back to the above, keep in mind that you aren't working with a clear diagnosis yet.  While there may, indeed, be no good treatments, that's still a general statement and you don't know how prescribed treatments will work on you.

      And yes, hacking out lymph nodes can be typical. Mine were all hacked out. Saved my life.  Might just save yours too.

      2B, you've got a definite flair for the dramatic and it may be a good thing in your live of work. But you've got to go back to the attitude of getting a grip.  This isn't theater, it's real life.  Panic works against you by clouding your judgement and hearing.  You've got to be able to think straight and make good decisions. Clarity is an absolute essential!  So, is a positive attitude.  That's a proven fact.  Panicking is the worst thing you can do. 

      God, 2B really needs you to speak calm and peace to her soul.  She needs you to drive away the panic attacks and to put everything she reads online in perspective, or in the trash. Please make sure she's got a good medical team and lead her to the best treatment available for what she actually has.  Lord, in Your mercy, speak your peace to our troubled friend. Amen.

      grace and peace,

      Carol

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        Janis B.
        Participant

        Carol, I do not know you, but with all my heart and soul I thank you for this prayer and the wisdom within it that speaks to my panicked mind today.  I think I can settle down and read a book now.

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        Carol Taylor
        Participant

        Janis,

        In an odd kind of way, I'm learning we all really do know each other. We're dealing with many of the same things: the initial diagnosis, the fears, the what ifs, the decisions, the making sure we've got the medical team we need, families, futures,…we're just doing it in different places & in different bodies with our own unique twists on our experiences.

        But that's why this board is so effective.  We're at different places but someone else is blazing the trail. And we're all ahead, on the trail, of somebody we can help.

        If I write anything that's of any help, thank you God. The wheat is his, the chaff is mine.

        Grace and peace,

        Carol  (click on Melanoma Prayer center link after my name whether you're on FB or not, you can still read what's there).

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        Janis B.
        Participant

        I did that last night:-)

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        Janis B.
        Participant

        I did that last night:-)

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        Carol Taylor
        Participant

        Janis,

        In an odd kind of way, I'm learning we all really do know each other. We're dealing with many of the same things: the initial diagnosis, the fears, the what ifs, the decisions, the making sure we've got the medical team we need, families, futures,…we're just doing it in different places & in different bodies with our own unique twists on our experiences.

        But that's why this board is so effective.  We're at different places but someone else is blazing the trail. And we're all ahead, on the trail, of somebody we can help.

        If I write anything that's of any help, thank you God. The wheat is his, the chaff is mine.

        Grace and peace,

        Carol  (click on Melanoma Prayer center link after my name whether you're on FB or not, you can still read what's there).

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        Janis B.
        Participant

        Carol, I do not know you, but with all my heart and soul I thank you for this prayer and the wisdom within it that speaks to my panicked mind today.  I think I can settle down and read a book now.

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      Carol Taylor
      Participant

      OK 2B, refresh my memory please, is this new onc you just saw a melanoma specialist? If not, that's what you need to do is get yourself to a specialist.

      If she is a specialist, keep in mind that "panic" is not your friend and neither is going on a feeding frenzy online.  Deep breath friend.

      There's something you need to understand, 100% doesn't exist in the world of medicine (or really anywhere else that I'm aware of). We're all human and our bodies are all different. Mistakes happen, misreads happen, misdiagnoses happen, Not only are our bodies different in ways and imperfect but all the sciences that deal with our bodies are imperfect.  Even when you get your diagnosis, and the dr is sure what she's working on, she can't predict how YOU specifically will react to any treatment.

      Back to the above, keep in mind that you aren't working with a clear diagnosis yet.  While there may, indeed, be no good treatments, that's still a general statement and you don't know how prescribed treatments will work on you.

      And yes, hacking out lymph nodes can be typical. Mine were all hacked out. Saved my life.  Might just save yours too.

      2B, you've got a definite flair for the dramatic and it may be a good thing in your live of work. But you've got to go back to the attitude of getting a grip.  This isn't theater, it's real life.  Panic works against you by clouding your judgement and hearing.  You've got to be able to think straight and make good decisions. Clarity is an absolute essential!  So, is a positive attitude.  That's a proven fact.  Panicking is the worst thing you can do. 

      God, 2B really needs you to speak calm and peace to her soul.  She needs you to drive away the panic attacks and to put everything she reads online in perspective, or in the trash. Please make sure she's got a good medical team and lead her to the best treatment available for what she actually has.  Lord, in Your mercy, speak your peace to our troubled friend. Amen.

      grace and peace,

      Carol

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      Janner
      Participant

      Are they sending out your pathology slides to someone else for another opinion?  Why panic when there is no diagnosis?  Wait until you really know something.  Researching a possibility isn't nearly as productive as researching a reality.  So I'd want others to look at the slides.  It might also be that taking the other lymph nodes could provide additional material for testing.  ASK.  In general, though, once you have one lymph node positive for something, they tend to want to remove them all from the same basin.  Find a pathologist who might specialize in the other options and have them read the slides.  Instead of panic, work on productive.

      Best wishes,

      Janner

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      Janner
      Participant

      Are they sending out your pathology slides to someone else for another opinion?  Why panic when there is no diagnosis?  Wait until you really know something.  Researching a possibility isn't nearly as productive as researching a reality.  So I'd want others to look at the slides.  It might also be that taking the other lymph nodes could provide additional material for testing.  ASK.  In general, though, once you have one lymph node positive for something, they tend to want to remove them all from the same basin.  Find a pathologist who might specialize in the other options and have them read the slides.  Instead of panic, work on productive.

      Best wishes,

      Janner

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      boot2aboot
      Participant

      to answer your questions…i saw a melanoma specialist today…and i think they have several pathologists working on this from what i understand…

      wish me luck on Thursday and again, Carol…i need to get rooted…and so will download your prayer…which i wrap up like a scroll and stick it in my pocket for easy access…no more internet SEARCH…

      thanks

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      boot2aboot
      Participant

      to answer your questions…i saw a melanoma specialist today…and i think they have several pathologists working on this from what i understand…

      wish me luck on Thursday and again, Carol…i need to get rooted…and so will download your prayer…which i wrap up like a scroll and stick it in my pocket for easy access…no more internet SEARCH…

      thanks

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      MichaelFL
      Participant

      As already stated, you really do need to calm yourself as you need to know what is going on currently and what to do going forward.

      Clear-cell sarcoma used to be known (maybe still in some circles) as "Soft-tissue melanoma," or "Melanoma of the soft parts". However, these older names are misnomers, as clear cell sarcoma is biologically distinct from melanoma. Clear cell sarcoma is usually treated with surgery in the first place in order to remove the tumor. The surgical procedure is then followed by radiation and chemotherapy. The most common places of its occurrence are the bone, lymphnodes, and lungs.

      If this is the case, and you do have Clear cell sarcoma, it gets it's name as it suggests this tumor arose in soft tissue and not from the skin, so most likely, there will be no primary.

      I did look at clinical trials.gov and there are currently 13 open studies for sarcoma, and 31 in all that are either not open or have yet to open. But you are not at this point yet so you really do need to concentrate on where you are right now instead.

      Again, try to stay calm and educate yourself going forward. Get family and friends involved to help you sort through this. You may also wish to consider a second opinion with a dermatopathologist.

      At your future appointments, write down questions you may have to discuss with the doctors, and take a recorder and someone with you. I know it is easier said than done, but you need to pull yourself together for your own sake.

      Michael

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        MichaelFL
        Participant

        Ok, I see now from reading further you do have several pathologists working on this, Good, good, good

        Michael

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        MichaelFL
        Participant

        Ok, I see now from reading further you do have several pathologists working on this, Good, good, good

        Michael

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      MichaelFL
      Participant

      As already stated, you really do need to calm yourself as you need to know what is going on currently and what to do going forward.

      Clear-cell sarcoma used to be known (maybe still in some circles) as "Soft-tissue melanoma," or "Melanoma of the soft parts". However, these older names are misnomers, as clear cell sarcoma is biologically distinct from melanoma. Clear cell sarcoma is usually treated with surgery in the first place in order to remove the tumor. The surgical procedure is then followed by radiation and chemotherapy. The most common places of its occurrence are the bone, lymphnodes, and lungs.

      If this is the case, and you do have Clear cell sarcoma, it gets it's name as it suggests this tumor arose in soft tissue and not from the skin, so most likely, there will be no primary.

      I did look at clinical trials.gov and there are currently 13 open studies for sarcoma, and 31 in all that are either not open or have yet to open. But you are not at this point yet so you really do need to concentrate on where you are right now instead.

      Again, try to stay calm and educate yourself going forward. Get family and friends involved to help you sort through this. You may also wish to consider a second opinion with a dermatopathologist.

      At your future appointments, write down questions you may have to discuss with the doctors, and take a recorder and someone with you. I know it is easier said than done, but you need to pull yourself together for your own sake.

      Michael

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      Melvynman
      Participant

      What is the diagnosis?  I am seven year survivor of Clear Cell Sarcoma (CCS) and it is not a Melanoma. 

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      Melvynman
      Participant

      What is the diagnosis?  I am seven year survivor of Clear Cell Sarcoma (CCS) and it is not a Melanoma. 

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      shellebrownies
      Participant

      Ah Boots…

      Don't you know looking stuff up on the internet is bad? (little joke here) But sometimes, it really is. You cannot look at statistics. People beat odds and statistics every day, so don't get into that mindgame. It just makes your brain hurt and scares the bejesus out of you. 

      You don't need that. It's a GOOD thing that your team of doctors is trying to be sure they are treating the right disease. If it's NOT melanoma, then it's a good chance it will respond to chemo/radiation a lot better than melanoma would. And besides, look at my husband's case. Chemo should not be helping him the way it is…but it is. You just don't know what might work best for you. Everybody's case is different. That's why statistics are just a bunch of s***.

      Make sure you are working with doctors whose opinions you TRUST. I cannot stress this enough. Because at some point, it will come down to a choice and you may have to trust that the doctor is offering the best options for you specifically. I've been on both sides of this coin. If you don't get good vibes from the doctor staff you're working with, then SWITCH! As someone said to me in one of my postings (I wish I could remember off the top of my head who it was because it was stellar advice): You are in the driver's seat. Drive or be driven.

      Be your own advocate and don't be afraid to question what your doctors are doing. 

      And hang in there; we are all here for you.

      Michelle, wife of Don

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      shellebrownies
      Participant

      Ah Boots…

      Don't you know looking stuff up on the internet is bad? (little joke here) But sometimes, it really is. You cannot look at statistics. People beat odds and statistics every day, so don't get into that mindgame. It just makes your brain hurt and scares the bejesus out of you. 

      You don't need that. It's a GOOD thing that your team of doctors is trying to be sure they are treating the right disease. If it's NOT melanoma, then it's a good chance it will respond to chemo/radiation a lot better than melanoma would. And besides, look at my husband's case. Chemo should not be helping him the way it is…but it is. You just don't know what might work best for you. Everybody's case is different. That's why statistics are just a bunch of s***.

      Make sure you are working with doctors whose opinions you TRUST. I cannot stress this enough. Because at some point, it will come down to a choice and you may have to trust that the doctor is offering the best options for you specifically. I've been on both sides of this coin. If you don't get good vibes from the doctor staff you're working with, then SWITCH! As someone said to me in one of my postings (I wish I could remember off the top of my head who it was because it was stellar advice): You are in the driver's seat. Drive or be driven.

      Be your own advocate and don't be afraid to question what your doctors are doing. 

      And hang in there; we are all here for you.

      Michelle, wife of Don

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      Steve0805
      Participant

      :( i found out today i got this too. Huge lump under my arm. Doesn"t seem like this is going to be any fun.

       

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      Steve0805
      Participant

      :( i found out today i got this too. Huge lump under my arm. Doesn"t seem like this is going to be any fun.

       

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