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Follow-up: First Oncology Visit

Forums General Melanoma Community Follow-up: First Oncology Visit

  • Post
    archer
    Participant

    Ok, I was asked to report back on my wife's first visit with an oncologist.  It was full of downs and one up.

    First she was seen by his PA.  Nice female, caring, asking a lot of questions and full body exam of her.  Found nothing.  Yeah!

    Then the oncologist comes in and does basically the same thing.  Asked her to dress and both came back in.  Here is what he said.

    Please keep in mind this was a first time for both of us… we went in scared, confused and sick (I had these symptoms not my wife)

    Ok, I was asked to report back on my wife's first visit with an oncologist.  It was full of downs and one up.

    First she was seen by his PA.  Nice female, caring, asking a lot of questions and full body exam of her.  Found nothing.  Yeah!

    Then the oncologist comes in and does basically the same thing.  Asked her to dress and both came back in.  Here is what he said.

    Please keep in mind this was a first time for both of us… we went in scared, confused and sick (I had these symptoms not my wife)

    He said that it could be a stage 3 or possibly a stage 4.  He said if it was a stage 3, it was curable and would be treated with  that in mind. (wow, I never

    expected to hear that) but if it was a stage 4 it was not curable and she would have to make some decisions if treatment was worth the side effects or

    would it be better to do nothing.  After that conversation, my bubbly, smiling, always positive wife was floored.  No smile, the life went out of her 

    immediately, zest was gone etc.  I could immediately tell and I told her to ask him and tell him what she was thinking.  I asked her if he had scared the hell

    out of her and she told him "yes".  He apologized and told her that wasn't her intention.

    After they left, a nurse came in to draw blood and for whatever reason, he started talking about her father, 65 yo who had a lump in his neck.  Not really 

    big she said but he came into this same oncologist and had it biopsied and the results were melanoma.  Well, after a PET scan, it has metastasized to his 

    lung.  Small tumors she said.  The doc along with the father and family decided to wait since he had a strong immune system etc etc.  It has been 7 

    and the last scan or xray showed the lung tumors grew but barely.  They are going to keep with the watching.  So, as she was sharing that story, I thought

    to myself that if the doc knew she was telling that, maybe she'd be in trouble but we were glad she shared that because it became the positive point of

    out time at this place.  So, we don't know what to think of this oncologist.  We are going to see another one Tuesday that says he specializes in 

    melanoma.  At least it will give us something to compare to.

    My thoughts…

    1. Please share your thoughts with us on how this first encounter strikes you

    2. How do I get this sick feeling in my stomach to go away.

    3. How do I get my mind to quit racing and always imagining the worst

    Thank you all for your replies.  I look forward to reading them.

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  • Replies
      Ranisa
      Participant

      I am in no way what I would consider "very knowledgable" in this area.  I do have Melanoma.  I have worked with doctors as a job before.  The doctor you should be seeing NEEDS to be a Melanoma specialist.  I too went to someone who was just a regular oncologist at first….mine told me the same thing…"once you get to stage IV there really isn't anything good to treat with".  They just don't seem to know any better.  There are LOTS of people on this board who are stage IV who are doing well, fighting and doing well…..there are even many who are NED.  Many people on here I am sure (hoping) that they can respond and give you more info.  It might be helpful if you put your location so they can recommend some of the "top Melanoma specialist".  Even if it takes a drive to get to them IT IS WORTH IT!  Has your wife had a PET or CT scan?  That seems to be the next step.  I am sorry you may have already answered these questions and I am just not remembering.  I can't wait to here how things go for her!  Here is wishing you both the best!  Don't worry until you have to….she hasn't been declaired stage IV…so go with what you know for sure.

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        archer
        Participant

        LOCATION for recommendations for a specialist is a great idea,

        ANYONE, we are in Iowa,  the one we are seeing next Tuesday is at the U of I Hospital and I got his name off of this

        website under Melanoma treatment centers.  Please share if you have any ideas  Thanks again for replying and 

        suggesting this.

         

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        Ranisa
        Participant

        I don't know much for Iowa….but I am going to Dr. Kaufmann at Rush Univ in Chicago.  Someone on this board recomended him.  I am sure someone can you give some insight on the area you are in.

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        archer
        Participant

        Thank you.  That is certainly a possibility…

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        archer
        Participant

        We are seeing a Dr Melhem.. I think that is the correct spelling

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        KellieSue
        Participant

        Sorry I missed this posting! Where in Iowa are you located? I see Dr. Milhelm also.

        Kellie(from Iowa) Stage IV

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        KellieSue
        Participant

        Sorry I missed this posting! Where in Iowa are you located? I see Dr. Milhelm also.

        Kellie(from Iowa) Stage IV

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        archer
        Participant

        We are seeing a Dr Melhem.. I think that is the correct spelling

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        archer
        Participant

        Thank you.  That is certainly a possibility…

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        Ranisa
        Participant

        I don't know much for Iowa….but I am going to Dr. Kaufmann at Rush Univ in Chicago.  Someone on this board recomended him.  I am sure someone can you give some insight on the area you are in.

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        archer
        Participant

        LOCATION for recommendations for a specialist is a great idea,

        ANYONE, we are in Iowa,  the one we are seeing next Tuesday is at the U of I Hospital and I got his name off of this

        website under Melanoma treatment centers.  Please share if you have any ideas  Thanks again for replying and 

        suggesting this.

         

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      Ranisa
      Participant

      I am in no way what I would consider "very knowledgable" in this area.  I do have Melanoma.  I have worked with doctors as a job before.  The doctor you should be seeing NEEDS to be a Melanoma specialist.  I too went to someone who was just a regular oncologist at first….mine told me the same thing…"once you get to stage IV there really isn't anything good to treat with".  They just don't seem to know any better.  There are LOTS of people on this board who are stage IV who are doing well, fighting and doing well…..there are even many who are NED.  Many people on here I am sure (hoping) that they can respond and give you more info.  It might be helpful if you put your location so they can recommend some of the "top Melanoma specialist".  Even if it takes a drive to get to them IT IS WORTH IT!  Has your wife had a PET or CT scan?  That seems to be the next step.  I am sorry you may have already answered these questions and I am just not remembering.  I can't wait to here how things go for her!  Here is wishing you both the best!  Don't worry until you have to….she hasn't been declaired stage IV…so go with what you know for sure.

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      KatyWI
      Participant

      Here's my blunt opnion.

      That onco's a jerk.

      With that off my chest, stage IV is NOT incurable – yes, it's very, very rare that someone will get to NED and stay there long term, but we have several on the board with 5, even 10 years NED status after a stage IV diagnosis.  And there are plenty of us who are not NED, but are living satisfying lives with treatment.  I find it very irresponsible for him to advocate, "oh well, it's stage IV, might as well give up now."

      Go see the specialist. 

      KatyWI

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        archer
        Participant

        I kinda had those same thoughts myself but knowing nothing about this and really new to this,  I just listened.

        Thanks for replying .  These replies really help me.

         

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        archer
        Participant

        I kinda had those same thoughts myself but knowing nothing about this and really new to this,  I just listened.

        Thanks for replying .  These replies really help me.

         

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      KatyWI
      Participant

      Here's my blunt opnion.

      That onco's a jerk.

      With that off my chest, stage IV is NOT incurable – yes, it's very, very rare that someone will get to NED and stay there long term, but we have several on the board with 5, even 10 years NED status after a stage IV diagnosis.  And there are plenty of us who are not NED, but are living satisfying lives with treatment.  I find it very irresponsible for him to advocate, "oh well, it's stage IV, might as well give up now."

      Go see the specialist. 

      KatyWI

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      Carol Taylor
      Participant

      I'm sorry Archer that that was how your experience went, but it underscores the absolute necessity of seeing a melanoma specialist!  Anyone with any type of cancer needs to see specialists in their cancer.  It's vital.

      Take that sick feeling and those racing thoughts and try to focus them on doing something positive with all you're feeling. Look at it this way: you did NOT get an informed opinion from an informed, up-to-date doctor. Don't let his callousness and ignorance and coldness drag you down.

      I'm not saying your reaction isn't normal and understandable…it is considering how new and unexpected this all is.  Why, you and your wife are still practically honeymooners! 

      I'm saying, recall all those Cancer Treatment Centers of America commercials you've seen. Your wife doesn't have any kind of expration date on her, regardless of her undiagnosed stage.  There is hope and help. Try to picture this visit as a bad dream and treat it that way. A bad dream. Wake up and move forward.  Today's a new day, live it to the fullest, channel your energy & nerves into something positive. Look forward to the visit with the specialist.

      If you had a water leak and called in your dentist to fix it and he botched the job and told you to tear down your house because that leak was going to lead to rust and mold, you'd wonder why you ever let him look at your leak in the first place and realize he didn't know what he was talking about and you'd call a plumber.

      You've had the dentist look at your leak.

      Grace and peace,

      Carol

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        Ranisa
        Participant

        Sorry this has nothing to do with the post…just Carol….I LOVE YOU!  Your sence of humor and wording makes me laugh and inspires me to be better.  THANK YOU!!!

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        Carol Taylor
        Participant

        Separate the wheat from the chaff…the wheat's God and the chaff's all mine. But thanks Ranisa.

        But, Archer, and anybody else, I'd like to use this as a springboard to remind you & your wife to keep a sense of humor as best as you possibly can right now.  That will get easier with time, but smiling and laughing is good medicine and it's free.  Also, do count your blessings.  They really are all around you and that will help you keep everything in perspective.

        And, please set your own perspective!  Don't let your doctors or anyone else color how you react and get through this.  Don't give anyone that power over you.  It's no secret now that I'm a double-blogger plus administrate the Melanoma Prayer Center on facebook (which you don't have to belong to fb to read and there's a link on the right side of the blog I'm about to refer you to).  My first post of Attitude of Gratitude is about developing just that and counting blessings. It might help you and your wife take a deep breath and get a healthier perspective:

        http://letsgivethanks.blogspot.com/2010/11/benefits-of-attitude-of-gratitude.html

        You're getting some great help on this board.  Take it to heart.  We've been there and are there.  You and your beloved are not traveling alone.

        Remember:

        1 Corinthians 13 (The Message)

        1 Corinthians 13

        The Way of Love

         1 If I speak with human eloquence and angelic ecstasy but don't love, I'm nothing but the creaking of a rusty gate. 2If I speak God's Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, "Jump," and it jumps, but I don't love, I'm nothing. 3-7If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don't love, I've gotten nowhere. So, no matter what I say, what I believe, and what I do, I'm bankrupt without love.

           Love never gives up.
           Love cares more for others than for self.
           Love doesn't want what it doesn't have.
           Love doesn't strut,
           Doesn't have a swelled head,
           Doesn't force itself on others,
           Isn't always "me first,"
           Doesn't fly off the handle,
           Doesn't keep score of the sins of others,
           Doesn't revel when others grovel,
           Takes pleasure in the flowering of truth,
           Puts up with anything,
           Trusts God always,
           Always looks for the best,
           Never looks back,
           But keeps going to the end.

         8-10Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be canceled.

         11When I was an infant at my mother's breast, I gurgled and cooed like any infant. When I grew up, I left those infant ways for good.

         12We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!

         13But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.

        May you love extravagently, Archer!

        Grace and peace,

        Carol

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        archer
        Participant

        Thank you Carol.  Already this board and the replies I have been given are acting as encouragement and therapy for me.

        I am excited for my wife to read this also……

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        Carol Taylor
        Participant

        Archer,

        Now that I've got a better handle on you & your wife (your response to Linda just now was most helpful!) go here and scroll till you see two different notes, one is In Praise of Care-givers: Unsing Heroes.  The other is About Sparrows.

        http://www.facebook.com/MelanomaPrayerCenter

        You've already taken big steps!  Congratulations!  You WILL get through this.

        Carol

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        Carol Taylor
        Participant

        Archer,

        Now that I've got a better handle on you & your wife (your response to Linda just now was most helpful!) go here and scroll till you see two different notes, one is In Praise of Care-givers: Unsing Heroes.  The other is About Sparrows.

        http://www.facebook.com/MelanomaPrayerCenter

        You've already taken big steps!  Congratulations!  You WILL get through this.

        Carol

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        archer
        Participant

        Thank you Carol.  Already this board and the replies I have been given are acting as encouragement and therapy for me.

        I am excited for my wife to read this also……

        Loading spinner
        Carol Taylor
        Participant

        Separate the wheat from the chaff…the wheat's God and the chaff's all mine. But thanks Ranisa.

        But, Archer, and anybody else, I'd like to use this as a springboard to remind you & your wife to keep a sense of humor as best as you possibly can right now.  That will get easier with time, but smiling and laughing is good medicine and it's free.  Also, do count your blessings.  They really are all around you and that will help you keep everything in perspective.

        And, please set your own perspective!  Don't let your doctors or anyone else color how you react and get through this.  Don't give anyone that power over you.  It's no secret now that I'm a double-blogger plus administrate the Melanoma Prayer Center on facebook (which you don't have to belong to fb to read and there's a link on the right side of the blog I'm about to refer you to).  My first post of Attitude of Gratitude is about developing just that and counting blessings. It might help you and your wife take a deep breath and get a healthier perspective:

        http://letsgivethanks.blogspot.com/2010/11/benefits-of-attitude-of-gratitude.html

        You're getting some great help on this board.  Take it to heart.  We've been there and are there.  You and your beloved are not traveling alone.

        Remember:

        1 Corinthians 13 (The Message)

        1 Corinthians 13

        The Way of Love

         1 If I speak with human eloquence and angelic ecstasy but don't love, I'm nothing but the creaking of a rusty gate. 2If I speak God's Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, "Jump," and it jumps, but I don't love, I'm nothing. 3-7If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don't love, I've gotten nowhere. So, no matter what I say, what I believe, and what I do, I'm bankrupt without love.

           Love never gives up.
           Love cares more for others than for self.
           Love doesn't want what it doesn't have.
           Love doesn't strut,
           Doesn't have a swelled head,
           Doesn't force itself on others,
           Isn't always "me first,"
           Doesn't fly off the handle,
           Doesn't keep score of the sins of others,
           Doesn't revel when others grovel,
           Takes pleasure in the flowering of truth,
           Puts up with anything,
           Trusts God always,
           Always looks for the best,
           Never looks back,
           But keeps going to the end.

         8-10Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be canceled.

         11When I was an infant at my mother's breast, I gurgled and cooed like any infant. When I grew up, I left those infant ways for good.

         12We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!

         13But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.

        May you love extravagently, Archer!

        Grace and peace,

        Carol

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        Ranisa
        Participant

        Sorry this has nothing to do with the post…just Carol….I LOVE YOU!  Your sence of humor and wording makes me laugh and inspires me to be better.  THANK YOU!!!

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      Carol Taylor
      Participant

      I'm sorry Archer that that was how your experience went, but it underscores the absolute necessity of seeing a melanoma specialist!  Anyone with any type of cancer needs to see specialists in their cancer.  It's vital.

      Take that sick feeling and those racing thoughts and try to focus them on doing something positive with all you're feeling. Look at it this way: you did NOT get an informed opinion from an informed, up-to-date doctor. Don't let his callousness and ignorance and coldness drag you down.

      I'm not saying your reaction isn't normal and understandable…it is considering how new and unexpected this all is.  Why, you and your wife are still practically honeymooners! 

      I'm saying, recall all those Cancer Treatment Centers of America commercials you've seen. Your wife doesn't have any kind of expration date on her, regardless of her undiagnosed stage.  There is hope and help. Try to picture this visit as a bad dream and treat it that way. A bad dream. Wake up and move forward.  Today's a new day, live it to the fullest, channel your energy & nerves into something positive. Look forward to the visit with the specialist.

      If you had a water leak and called in your dentist to fix it and he botched the job and told you to tear down your house because that leak was going to lead to rust and mold, you'd wonder why you ever let him look at your leak in the first place and realize he didn't know what he was talking about and you'd call a plumber.

      You've had the dentist look at your leak.

      Grace and peace,

      Carol

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      Carmon in NM
      Participant

      Archer – I was horrified and extremely angry by what this oncologist told you and your wife regarding stage IV and so was my husband when I read it to him. I would very much like to give him a piece of my Stage IV mind!

      You definitely need to find a different onc and one who knows what he or she is talking about! From the time I got out of the hospital from an emergency craniotomy to treat a bleeding brain metastasis, my oncologist has told me, 'I am going to cure you.' Sure I'm realistic enough to know that may not happen, but that is the kind of support you need! You need a doctor who is up to date on all of the current and newest treatments as well as all of the clinical trials now available and will fight to 'cure' you.

      There are so many of us Stage IV folks out here who are not only surviving but thriving that I am sure others are going to speak up about this as well. I know you are both terrified and at this point there isn't much I can do to help that. Just know that there ARE options for Stage IV and many of us have had great success with those options!

      As for what you are dealing with, Archer, I wish I could help you with that and I am hoping some of the caregivers here will speak up in how they have handled the extreme emotions and stress. I'm thinking of and praying for you both!

      Carmon in NM – Stage IIIb 9/2008, Stage IV 6/2010

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        archer
        Participant

        Thank you again for replying.  Also, thank you for expressing your feelings as well as those from your husband

        I haven't shared this website with my wife yet but she knows I am on it.  However, she is going to start reading this

        this weekend.  I want her to feel the community and the hope that I feel reading other stories and reading the replies to

        me.  This has been an oasis for me and it will be for us.  Thanks again

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        archer
        Participant

        Thank you again for replying.  Also, thank you for expressing your feelings as well as those from your husband

        I haven't shared this website with my wife yet but she knows I am on it.  However, she is going to start reading this

        this weekend.  I want her to feel the community and the hope that I feel reading other stories and reading the replies to

        me.  This has been an oasis for me and it will be for us.  Thanks again

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      Carmon in NM
      Participant

      Archer – I was horrified and extremely angry by what this oncologist told you and your wife regarding stage IV and so was my husband when I read it to him. I would very much like to give him a piece of my Stage IV mind!

      You definitely need to find a different onc and one who knows what he or she is talking about! From the time I got out of the hospital from an emergency craniotomy to treat a bleeding brain metastasis, my oncologist has told me, 'I am going to cure you.' Sure I'm realistic enough to know that may not happen, but that is the kind of support you need! You need a doctor who is up to date on all of the current and newest treatments as well as all of the clinical trials now available and will fight to 'cure' you.

      There are so many of us Stage IV folks out here who are not only surviving but thriving that I am sure others are going to speak up about this as well. I know you are both terrified and at this point there isn't much I can do to help that. Just know that there ARE options for Stage IV and many of us have had great success with those options!

      As for what you are dealing with, Archer, I wish I could help you with that and I am hoping some of the caregivers here will speak up in how they have handled the extreme emotions and stress. I'm thinking of and praying for you both!

      Carmon in NM – Stage IIIb 9/2008, Stage IV 6/2010

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      premedy
      Participant

      That onc is ridiculous and so is the PA. Seriously you should never go back there ever again and go see a competent melanoma specialist immediately.  Wait and see is not an option for stage IV and there are plenty of new treatments available today that are working and that have minimal side effects.  I am shocked at what they said that to you..shocked. Please read the post from vickirs entitled "Eisai Inc. – E7080"

      The best way to get the sick feeling to go away is to go to the best melanoma center of excellence within the range that you are willing to travel.  You'll get scans right away and know if you are stage III or stage IV.  If you are stage III great, you'll find out if its in the lymph nodes, if it is you'll take em out, and then you'll decide what you would like to do to prevent it from getting to stage IV.   At  stage III "wait and see" is a viable option but there are also drugs available to help as well.  If you are stage IV so what.  You'll get to choose from a number of great cutting edge treatments. Sure you'll be in for a battle but you sure as hell won't be doing nothing.  You are really smart for coming here.  There are lots of helpful people that know so much about melanaoma and they will surely respond and give you great advice.   Empowering yourself with knowledge is really important especially when dealing with oncologists like the one you saw.

       

      pat

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      premedy
      Participant

      That onc is ridiculous and so is the PA. Seriously you should never go back there ever again and go see a competent melanoma specialist immediately.  Wait and see is not an option for stage IV and there are plenty of new treatments available today that are working and that have minimal side effects.  I am shocked at what they said that to you..shocked. Please read the post from vickirs entitled "Eisai Inc. – E7080"

      The best way to get the sick feeling to go away is to go to the best melanoma center of excellence within the range that you are willing to travel.  You'll get scans right away and know if you are stage III or stage IV.  If you are stage III great, you'll find out if its in the lymph nodes, if it is you'll take em out, and then you'll decide what you would like to do to prevent it from getting to stage IV.   At  stage III "wait and see" is a viable option but there are also drugs available to help as well.  If you are stage IV so what.  You'll get to choose from a number of great cutting edge treatments. Sure you'll be in for a battle but you sure as hell won't be doing nothing.  You are really smart for coming here.  There are lots of helpful people that know so much about melanaoma and they will surely respond and give you great advice.   Empowering yourself with knowledge is really important especially when dealing with oncologists like the one you saw.

       

      pat

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      lhaley
      Participant

      I'm actually surprised that further testing wasn't discussed to decide your wifes staging, then they could have had a more logical talk.  I know that everyone here is saying go to a melanoma specialist, and I do agree, however I also go to a local oncologist who is very uplifting and positive.  We have moved and my new local oncologist is the same.  Both of them call my mel specialist when they have questions.

      When I was originally diagnosed with my recurance they did not discuss staging. It was an intern that said something assuming that I knew I was stage IV. When my Dr. came in I went into tears. I asked him if I could plan a future, he said yes. He was not a mel specialist but very up to date and he was the melanoma go to Dr. at the time in Charleston.  That was almost 5 years ago!!!  Unfortunately they should not use the word cure when they talk melanoma. They should use words such as hope, NED, new treatments.  Personally I feel that way about all cancers.  If they use the word cure that means that it will never come back and doesn't even have a chance of coming back – that isn't realistic, but there is hope and there are plenty of us that have been around long term and plan on staying here!!   If you search back several pages now there is a post for a roll call for long term stage IV. It's inspiring. 

      Even at stage IV there are many of us on watch and wait if we have surgically become NED (no evidence of disease). 

      As far as getting that sick feeling to go away and for your mind to settle down…. it will take time. You definitely need more information for that to happen. Your wife is still in limbo because they haven't ordered any tests!    Once you know what you are dealing with that will help. Having a plan always helps.  When it's scan time we all go through anxieties again. I can't imagine that their is a person on this board that doesn't go through that.  Things that help are meditation, exercise, talking to others, and for me personally when my anxieties are high I make sure that I am doing something at all times! It can be reading, sewing, cooking, and most recently aggressive yardwork. 

      Go meet with the melanoma specialist and gather more information. Even then he will be able to tell you little without further tests. Different hospitals have different policies.  Some places take a week for test results. Some have you take the tests in the morning and you get the results in the afternoon during your appointment.

      For today, take your wife out to lunch, go for a long walk and find a way to support each other. It's amazing but in many cases it brings couples together even stronger.

      Linda

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        archer
        Participant

        Linda,

        Thanks for taking the time to reply.  LIke the others, it really helps me.  Actually, I find myself looking forward to seeing

        that there are unread messages.  Just think, a very short time ago I didn't even feel comfortable saying the word Cancer.

        Now look at us…  I haven't done much in the past 5 days except read, pray, cry and feel sick.  When we left the oncologist

        yesterday is the first time my wife became weak and broke down.  She said, now I am weak and you are strong.  She '

        also looked me in the eye with a very piercing stare, one that caught my attention and said, "I will beat this"  It was one 

        of those moments.  The other moment is when the oncologist left the room yesterday.  As soon as the door was closed,

        she turned to me and said "Apparently he doesn't know Jesus"  She has faith like no other…  Sorry everyone, I am 

        rambling.

         

         

         

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        archer
        Participant

        Linda,

        Thanks for taking the time to reply.  LIke the others, it really helps me.  Actually, I find myself looking forward to seeing

        that there are unread messages.  Just think, a very short time ago I didn't even feel comfortable saying the word Cancer.

        Now look at us…  I haven't done much in the past 5 days except read, pray, cry and feel sick.  When we left the oncologist

        yesterday is the first time my wife became weak and broke down.  She said, now I am weak and you are strong.  She '

        also looked me in the eye with a very piercing stare, one that caught my attention and said, "I will beat this"  It was one 

        of those moments.  The other moment is when the oncologist left the room yesterday.  As soon as the door was closed,

        she turned to me and said "Apparently he doesn't know Jesus"  She has faith like no other…  Sorry everyone, I am 

        rambling.

         

         

         

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      lhaley
      Participant

      I'm actually surprised that further testing wasn't discussed to decide your wifes staging, then they could have had a more logical talk.  I know that everyone here is saying go to a melanoma specialist, and I do agree, however I also go to a local oncologist who is very uplifting and positive.  We have moved and my new local oncologist is the same.  Both of them call my mel specialist when they have questions.

      When I was originally diagnosed with my recurance they did not discuss staging. It was an intern that said something assuming that I knew I was stage IV. When my Dr. came in I went into tears. I asked him if I could plan a future, he said yes. He was not a mel specialist but very up to date and he was the melanoma go to Dr. at the time in Charleston.  That was almost 5 years ago!!!  Unfortunately they should not use the word cure when they talk melanoma. They should use words such as hope, NED, new treatments.  Personally I feel that way about all cancers.  If they use the word cure that means that it will never come back and doesn't even have a chance of coming back – that isn't realistic, but there is hope and there are plenty of us that have been around long term and plan on staying here!!   If you search back several pages now there is a post for a roll call for long term stage IV. It's inspiring. 

      Even at stage IV there are many of us on watch and wait if we have surgically become NED (no evidence of disease). 

      As far as getting that sick feeling to go away and for your mind to settle down…. it will take time. You definitely need more information for that to happen. Your wife is still in limbo because they haven't ordered any tests!    Once you know what you are dealing with that will help. Having a plan always helps.  When it's scan time we all go through anxieties again. I can't imagine that their is a person on this board that doesn't go through that.  Things that help are meditation, exercise, talking to others, and for me personally when my anxieties are high I make sure that I am doing something at all times! It can be reading, sewing, cooking, and most recently aggressive yardwork. 

      Go meet with the melanoma specialist and gather more information. Even then he will be able to tell you little without further tests. Different hospitals have different policies.  Some places take a week for test results. Some have you take the tests in the morning and you get the results in the afternoon during your appointment.

      For today, take your wife out to lunch, go for a long walk and find a way to support each other. It's amazing but in many cases it brings couples together even stronger.

      Linda

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      Jerry from Cape Cod
      Participant

      Hi Archer,

      Tell that doc there are a bunch of Stage IV's who would like to tell him to kiss their *sses, but for him it would be like looking in a mirror.

      Find yourself a true melanoma treatment center with a good melanoma specialist.  The path is not easy and there is no guarantee, but there is hope and we Stage IV survivors are not VERY, VERY rare… there are more every day and there are new treatment options and trials virtually every day.

      If the next oncologist does not fit the bill, go find another until you find one who is realistic and supportive.

      Jerry from Cape Cod

      Stage IV… long past my "expiration" date

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      Jerry from Cape Cod
      Participant

      Hi Archer,

      Tell that doc there are a bunch of Stage IV's who would like to tell him to kiss their *sses, but for him it would be like looking in a mirror.

      Find yourself a true melanoma treatment center with a good melanoma specialist.  The path is not easy and there is no guarantee, but there is hope and we Stage IV survivors are not VERY, VERY rare… there are more every day and there are new treatment options and trials virtually every day.

      If the next oncologist does not fit the bill, go find another until you find one who is realistic and supportive.

      Jerry from Cape Cod

      Stage IV… long past my "expiration" date

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      washoegal
      Participant

      You have had a lousy experience through the whole process.  I'm sorry, it shouldn't be like that.  I was lucky,     through my diagnosis and surgeries I had wonderful doctors.  However when it was time for my 6 month scan, my original Onc had moved across the country so I saw his partner, who was the director of the facility and also a well known specialist.  After he reviewed my file and while still looking away he said "If you survive melanoma" and started spouting statistics.

      Needless to say, when I got home I started a search for another Onc.  I am not a statistic.  I will not be treated as one.  I went into to this fully expecting to survive but those word rung in my ears.  If you don't have a good feeling for a doctor, no matter what his/her reputation is find another one.  You need some one you can communicate with.  A lot of the battle is attitude, and you don't need any one around you that will bring you down.

      Good Luck

      Mary

      Stage 3

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      washoegal
      Participant

      You have had a lousy experience through the whole process.  I'm sorry, it shouldn't be like that.  I was lucky,     through my diagnosis and surgeries I had wonderful doctors.  However when it was time for my 6 month scan, my original Onc had moved across the country so I saw his partner, who was the director of the facility and also a well known specialist.  After he reviewed my file and while still looking away he said "If you survive melanoma" and started spouting statistics.

      Needless to say, when I got home I started a search for another Onc.  I am not a statistic.  I will not be treated as one.  I went into to this fully expecting to survive but those word rung in my ears.  If you don't have a good feeling for a doctor, no matter what his/her reputation is find another one.  You need some one you can communicate with.  A lot of the battle is attitude, and you don't need any one around you that will bring you down.

      Good Luck

      Mary

      Stage 3

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      Rebecca and Bob
      Participant

      Archer,

       

      Sorry you are going through this my husband is Stage IV  since April 2008, NED 20 months. My answers to your questions; 1. That's horrible our first visit to NIH was more them saying we can possibly cure you and not to get down and out. I think the doctors exact words were "what are you going to do lay down and die or fight this thing." because he could see my husbands depression and loss of hope. So good for you, get to the melanoma specialist. 2. Think happy thoughts, your not in Japan. You see the bus coming and you can do something about it. 3. That's tough, it has taken me at least until now to start thinking everything will be okay and we actually survive this disease. Read the good stories and focus on the survivors. Do not look at your wife like she is going to die, she will not appreciate that.

      Make sure you see more than one melanoma specialist no matter news you get. Your wife needs someone who is going to take every chance to make sure she is okay. Keep your own records no matter what doctor you go with and be agressive for your wife.

       

      Good luck with the next appointment.

      Rebecca

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      Rebecca and Bob
      Participant

      Archer,

       

      Sorry you are going through this my husband is Stage IV  since April 2008, NED 20 months. My answers to your questions; 1. That's horrible our first visit to NIH was more them saying we can possibly cure you and not to get down and out. I think the doctors exact words were "what are you going to do lay down and die or fight this thing." because he could see my husbands depression and loss of hope. So good for you, get to the melanoma specialist. 2. Think happy thoughts, your not in Japan. You see the bus coming and you can do something about it. 3. That's tough, it has taken me at least until now to start thinking everything will be okay and we actually survive this disease. Read the good stories and focus on the survivors. Do not look at your wife like she is going to die, she will not appreciate that.

      Make sure you see more than one melanoma specialist no matter news you get. Your wife needs someone who is going to take every chance to make sure she is okay. Keep your own records no matter what doctor you go with and be agressive for your wife.

       

      Good luck with the next appointment.

      Rebecca

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