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  • Post
    boot2aboot
    Participant

    i am BRCA2+ so i already have gynocological cancer surveillance…my armpit was sore for awhile and i thought i pulled a muscle…imagine my surprise when i found a HUGH lump…i called my ONC and she did a core and FNB along with an abdominal CT, Bone Scan and Mammo….it took the pathologist a really long time to find out what type of cancer it was….i think my doc and i were shocked when i ended up with a melanoma diagnosis….we were expecting breast or ovarian…i know nothing about melanoma, where the primary site is or anything…i am sitting here all alone scared and with lots of q

    i am BRCA2+ so i already have gynocological cancer surveillance…my armpit was sore for awhile and i thought i pulled a muscle…imagine my surprise when i found a HUGH lump…i called my ONC and she did a core and FNB along with an abdominal CT, Bone Scan and Mammo….it took the pathologist a really long time to find out what type of cancer it was….i think my doc and i were shocked when i ended up with a melanoma diagnosis….we were expecting breast or ovarian…i know nothing about melanoma, where the primary site is or anything…i am sitting here all alone scared and with lots of questions…she got me an appt with a melanoma onc…i go see her wednesday….but i am in complete shock…and the only indicator that i had melanoma is a hugh tumor in my lymph node…..

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  • Replies
      jimjoeb
      Participant

      I was diagnosed two weeks ago today and I'm in the middle of staging.

      I learned on a Friday as well. It's very scary because there's no possibility of any new information for at least two days.

      Stay positive. Focus on the fact that it was discovered and now the action can start to do something about it. There are lots of great people at this site who have shown me what courage they have. They are also a source of incredible information.

      Take care! You're not alone.

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        boot2aboot
        Participant

        did you have a mole that went bonkers or like me find a neoplasm in lymph?

        staging….how do they determine that especially if they don't even know the primary site?

        How do you get your mind off of it….i feel like i am on death row

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        Janner
        Participant

        Take a deep breath.  This is not a death sentence.  About 6-10% of melanomas are found like yours – without a primary site.  Anyone who has melanoma in their lymph nodes will be stage III regardless if they had a primary site or not.  You can't fine tune the staging yet without more information.  Stage I and stage II are only used if you have a primary site and they can measure the depth of the lesion.  I'm sure you'll probably have some scans to see if there are any other areas of interest.  Just take this one step at a time.  The terminology can be overwhelming.  I suggest you write down the questions you have for the melanoma specialist and take a copy with you to your appointment.  Then you can make sure all the stuff you are thinking about now will be answered.

        Best wishes,

        Janner

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        boot2aboot
        Participant

        Janner, thank you for the web site link….wow is this ever going to be a long weekend….i just SAW the dermatologist in FEB…no signs

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        boot2aboot
        Participant

        Janner, thank you for the web site link….wow is this ever going to be a long weekend….i just SAW the dermatologist in FEB…no signs

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        Janner
        Participant

        Take a deep breath.  This is not a death sentence.  About 6-10% of melanomas are found like yours – without a primary site.  Anyone who has melanoma in their lymph nodes will be stage III regardless if they had a primary site or not.  You can't fine tune the staging yet without more information.  Stage I and stage II are only used if you have a primary site and they can measure the depth of the lesion.  I'm sure you'll probably have some scans to see if there are any other areas of interest.  Just take this one step at a time.  The terminology can be overwhelming.  I suggest you write down the questions you have for the melanoma specialist and take a copy with you to your appointment.  Then you can make sure all the stuff you are thinking about now will be answered.

        Best wishes,

        Janner

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        boot2aboot
        Participant

        did you have a mole that went bonkers or like me find a neoplasm in lymph?

        staging….how do they determine that especially if they don't even know the primary site?

        How do you get your mind off of it….i feel like i am on death row

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      jimjoeb
      Participant

      I was diagnosed two weeks ago today and I'm in the middle of staging.

      I learned on a Friday as well. It's very scary because there's no possibility of any new information for at least two days.

      Stay positive. Focus on the fact that it was discovered and now the action can start to do something about it. There are lots of great people at this site who have shown me what courage they have. They are also a source of incredible information.

      Take care! You're not alone.

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      lhaley
      Participant

      I'm so sorry you've had to join us. Being diagnosed on a Friday without answers makes it all the more stressful.  Just know that there are people here to help you through.  If might help some if you build a profile about yourself so we can know a little more about you and where your from.

      If you go into chat there is a chance that someone will join you so you can talk out your feelings.  Weekends do tend to be slow on the board. 

      Know that there is hope and it takes awhile after a diagnosis to adjust.  You said that you are home alone. You might want to call a friend so you have someone to talk to.  I remember clearly my first night of my diagnosis. My melanoma had metastized 27 years after the mole had been removed. I had been to this board before but not regularly. At the time I didn't have the right software to allow me into chat. A dear man discovered that we had the same oncologist and we e-mailed back and forth all night long. I think I kept him up till about 3 in the morning!!  That was 5 years ago. We are both stage IV and both still kicking and alive.  Walter doesn't come to the board very often anymore but we are still in contact.

      Linda

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        boot2aboot
        Participant

        oh Linda, you are such a sweetheart….i know when my ONC called with the news it was grim….cancer scare is not new to me….but finding out it was melanoma instead of breast or ovarian puts me on a new path with a new ONC….and new treatments….there is some shadow on my CT in my spine….i can't beleive how fast this stuff can grow…i can tell you that last november my lymphs were clean….it makes me more positive to know that there are people like yourself who have really put the good fight in and been successful…this stuff really is 'the beast'….i like the idea that YOU are HERE 

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        boot2aboot
        Participant

        oh Linda, you are such a sweetheart….i know when my ONC called with the news it was grim….cancer scare is not new to me….but finding out it was melanoma instead of breast or ovarian puts me on a new path with a new ONC….and new treatments….there is some shadow on my CT in my spine….i can't beleive how fast this stuff can grow…i can tell you that last november my lymphs were clean….it makes me more positive to know that there are people like yourself who have really put the good fight in and been successful…this stuff really is 'the beast'….i like the idea that YOU are HERE 

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      lhaley
      Participant

      I'm so sorry you've had to join us. Being diagnosed on a Friday without answers makes it all the more stressful.  Just know that there are people here to help you through.  If might help some if you build a profile about yourself so we can know a little more about you and where your from.

      If you go into chat there is a chance that someone will join you so you can talk out your feelings.  Weekends do tend to be slow on the board. 

      Know that there is hope and it takes awhile after a diagnosis to adjust.  You said that you are home alone. You might want to call a friend so you have someone to talk to.  I remember clearly my first night of my diagnosis. My melanoma had metastized 27 years after the mole had been removed. I had been to this board before but not regularly. At the time I didn't have the right software to allow me into chat. A dear man discovered that we had the same oncologist and we e-mailed back and forth all night long. I think I kept him up till about 3 in the morning!!  That was 5 years ago. We are both stage IV and both still kicking and alive.  Walter doesn't come to the board very often anymore but we are still in contact.

      Linda

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      Carol Taylor
      Participant

      I'm sorry you're here for the reason you're here; but, I'm glad you're here considering the reason.  This is a great place and I wish I had found it going on 3 years ago.  This is also a great place to go ahead and start asking those questions.  You'll be surprised at what some of the folks here can tell you and, what they can't, they'll tell you to make a note of it and ask Wed.

      (I do want to say "kudos" to your onc for getting an appt with a melanoma specialist!  You are, obviously, in good hands, and that's so important that she's already taken that step and we don't have to tell you to).

      It's a tough thing to hear.  I was off at school, it was a Thursday and I got the news through voicemail.  Though I was surrounded by a couple hundred fellow students at Duke, I still felt alone because my family was 2 1/2 hours away.  Feeling "alone" probably goes with it.

      That said, take a deep breath.  It's not what you planned, but you'll find you're a lot tougher and stronger than you ever imagined.  Call a friend; call delivery and get food, take a long walk, put your energy into something positive so you don't turn into a nervous wreck soon.  The shock and scariness will go away and you'll do what you have to do.  right now, baby yourself a little and cry if you need to and deal with what you're feeling.

      You'll need your wits, clarity, and courage come Wednesday.

      Praying for you friend.

      Grace and peace,

      Carol

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        boot2aboot
        Participant

        i think this is going to be a tough fight…if it's in my lymphs…i didn't have anything 'suspicious' taken off my skin, i never saw the inside of a tanning booth, i don't lay out in the sun…i just don't get it…wednesday is going to be a long wait….i have been sitting here reading and jeez the odds are just….awful….i can actually feel this thing growing in my armpit….

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        Carol Taylor
        Participant

        OK, Boobt2boot, one the "odds" aren't just awful.  And you're letting this run away with you when you can feel it growing.  Sometimes life just bites. No rhyme or reason.  Don't drive yourself nuts trying to look for a reason, especially when all the old standbys don't seem to fit in your case. 

        I don't know if you're a praying person, but I am (comes with the territiory) so if you're going to be reading anything, read this…over and over:

        God, I need peace and I need calm. My mind and my fears and nerves are starting to get the best of me.  Everything I'm reading is causing me to see boogeymen everywhere. Please help me feel hopeful in this time and grant me strength. Right now Wednesday seems so far away.  Will it ever get here? Will I get answers to me questions? Why is this happening? I don't understand and I want to but nothing makes any sense.  Help me God. Help me.  If I get angry, help me. If I panic, help me. If I can't sleep or function, help me. Grant me clarity and wisdom and help me fight against this gnawing at my mind and soul.  I feel helpless and powerless. In your mercy. Amen.

         

        Boot2boot, that's the first time I've done that on this board and I don't know, really I don't know, I may get told that I can't or shouldn't do that here and if so I won't again.  But Boot, I want to help you get a grip.  HAve you got family or a friend nearby you can go stay with?  I'm concerned about you Boot. You don't need to be by yourself.

        Carol

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        boot2aboot
        Participant

        OK Carol, your prayer is going to be my new mantra everytime i see that bogeyman=i printed it and look at it…you are right…i need to get a grip…it is what it is…and i have a choice….give in or fight….time to log off and do something distracting….thank you Carol….you have great spirit….

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        lhaley
        Participant

        It is going to be a long weekend for you. Sometimes research is good, sometimes you need to take a break.  You need to remember that you are not a statistic. There are so many people that are a success story. Many of those people have left this site and moved on with their life. 

        Some of the things that I do when I'm stressed and can't get a clear head:  work in the garden , exercise, meditate (I'm not that good at that but I try), call a friend, read a mystery, listen to a book on tape, and quilt. I cannot watch TV without something to do with my hands.  

        You will most likely find sleep doesn't come.  Don't lay in bed with your mind spinning. Get up and find something to do that occupies you until you feel you can get some sleep.  My Dr. has told me that most cancer patients have a difficult time sleeping. Once he told me that I found it easier to request sleeping pills. 

        Once you have a plan in place it does get easier.

        Linda

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        lhaley
        Participant

        It is going to be a long weekend for you. Sometimes research is good, sometimes you need to take a break.  You need to remember that you are not a statistic. There are so many people that are a success story. Many of those people have left this site and moved on with their life. 

        Some of the things that I do when I'm stressed and can't get a clear head:  work in the garden , exercise, meditate (I'm not that good at that but I try), call a friend, read a mystery, listen to a book on tape, and quilt. I cannot watch TV without something to do with my hands.  

        You will most likely find sleep doesn't come.  Don't lay in bed with your mind spinning. Get up and find something to do that occupies you until you feel you can get some sleep.  My Dr. has told me that most cancer patients have a difficult time sleeping. Once he told me that I found it easier to request sleeping pills. 

        Once you have a plan in place it does get easier.

        Linda

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        boot2aboot
        Participant

        OK Carol, your prayer is going to be my new mantra everytime i see that bogeyman=i printed it and look at it…you are right…i need to get a grip…it is what it is…and i have a choice….give in or fight….time to log off and do something distracting….thank you Carol….you have great spirit….

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        Carol Taylor
        Participant

        OK, Boobt2boot, one the "odds" aren't just awful.  And you're letting this run away with you when you can feel it growing.  Sometimes life just bites. No rhyme or reason.  Don't drive yourself nuts trying to look for a reason, especially when all the old standbys don't seem to fit in your case. 

        I don't know if you're a praying person, but I am (comes with the territiory) so if you're going to be reading anything, read this…over and over:

        God, I need peace and I need calm. My mind and my fears and nerves are starting to get the best of me.  Everything I'm reading is causing me to see boogeymen everywhere. Please help me feel hopeful in this time and grant me strength. Right now Wednesday seems so far away.  Will it ever get here? Will I get answers to me questions? Why is this happening? I don't understand and I want to but nothing makes any sense.  Help me God. Help me.  If I get angry, help me. If I panic, help me. If I can't sleep or function, help me. Grant me clarity and wisdom and help me fight against this gnawing at my mind and soul.  I feel helpless and powerless. In your mercy. Amen.

         

        Boot2boot, that's the first time I've done that on this board and I don't know, really I don't know, I may get told that I can't or shouldn't do that here and if so I won't again.  But Boot, I want to help you get a grip.  HAve you got family or a friend nearby you can go stay with?  I'm concerned about you Boot. You don't need to be by yourself.

        Carol

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        boot2aboot
        Participant

        i think this is going to be a tough fight…if it's in my lymphs…i didn't have anything 'suspicious' taken off my skin, i never saw the inside of a tanning booth, i don't lay out in the sun…i just don't get it…wednesday is going to be a long wait….i have been sitting here reading and jeez the odds are just….awful….i can actually feel this thing growing in my armpit….

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        boot2aboot
        Participant

        i think this is going to be a tough fight…if it's in my lymphs…i didn't have anything 'suspicious' taken off my skin, i never saw the inside of a tanning booth, i don't lay out in the sun…i just don't get it…wednesday is going to be a long wait….i have been sitting here reading and jeez the odds are just….awful….i can actually feel this thing growing in my armpit….

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        shellebrownies
        Participant

        My hubby was just diagnosed 2 weeks ago and his situation was much like yours. A lymph node in his right armpit just grew like crazy in a little over a month. It was sudden and shocking, and the diagnosis moreso.

        The people here on this message board are great; really helpful and supportive. My hubby felt so much better just hearing from other people who are fighting the same fight he is. 

        We have definitely found that having me go along to all his appointments has been helpful, because, as the patient, it's hard in the heat of the moment to remember all the things you wanted to ask and everything you've been told. And just having someone there for moral support helps, too (or so hubby has told me!).

        Take a deep breath. And do NOT obsess over the odds; it wil drive you crazy. Besides, every person's case is different. You are not a number or a statistic. You do not have an expiration date stamped on your forehead.

        Just know that you are not alone. There are lots of people on this website alone who are willing to listen, ask questions, be supportive, empathize wih you. 

        Best of luck, and keep us posted.

        Michelle (wife of Don, his staging is not complete yet, but at least Stage IIIC)

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        shellebrownies
        Participant

        My hubby was just diagnosed 2 weeks ago and his situation was much like yours. A lymph node in his right armpit just grew like crazy in a little over a month. It was sudden and shocking, and the diagnosis moreso.

        The people here on this message board are great; really helpful and supportive. My hubby felt so much better just hearing from other people who are fighting the same fight he is. 

        We have definitely found that having me go along to all his appointments has been helpful, because, as the patient, it's hard in the heat of the moment to remember all the things you wanted to ask and everything you've been told. And just having someone there for moral support helps, too (or so hubby has told me!).

        Take a deep breath. And do NOT obsess over the odds; it wil drive you crazy. Besides, every person's case is different. You are not a number or a statistic. You do not have an expiration date stamped on your forehead.

        Just know that you are not alone. There are lots of people on this website alone who are willing to listen, ask questions, be supportive, empathize wih you. 

        Best of luck, and keep us posted.

        Michelle (wife of Don, his staging is not complete yet, but at least Stage IIIC)

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        boot2aboot
        Participant

        i think this is going to be a tough fight…if it's in my lymphs…i didn't have anything 'suspicious' taken off my skin, i never saw the inside of a tanning booth, i don't lay out in the sun…i just don't get it…wednesday is going to be a long wait….i have been sitting here reading and jeez the odds are just….awful….i can actually feel this thing growing in my armpit….

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      Carol Taylor
      Participant

      I'm sorry you're here for the reason you're here; but, I'm glad you're here considering the reason.  This is a great place and I wish I had found it going on 3 years ago.  This is also a great place to go ahead and start asking those questions.  You'll be surprised at what some of the folks here can tell you and, what they can't, they'll tell you to make a note of it and ask Wed.

      (I do want to say "kudos" to your onc for getting an appt with a melanoma specialist!  You are, obviously, in good hands, and that's so important that she's already taken that step and we don't have to tell you to).

      It's a tough thing to hear.  I was off at school, it was a Thursday and I got the news through voicemail.  Though I was surrounded by a couple hundred fellow students at Duke, I still felt alone because my family was 2 1/2 hours away.  Feeling "alone" probably goes with it.

      That said, take a deep breath.  It's not what you planned, but you'll find you're a lot tougher and stronger than you ever imagined.  Call a friend; call delivery and get food, take a long walk, put your energy into something positive so you don't turn into a nervous wreck soon.  The shock and scariness will go away and you'll do what you have to do.  right now, baby yourself a little and cry if you need to and deal with what you're feeling.

      You'll need your wits, clarity, and courage come Wednesday.

      Praying for you friend.

      Grace and peace,

      Carol

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      FormerCaregiver
      Participant

      I joined this forum a couple of months ago, and since that time I have found
      that this is truly outstanding community of people. In fact, I feel that we are
      all members of the best melanoma forum in the world!

      There are some very knowledgeable people in this forum, who are really up to
      date with treatment options.

      Fortunately, there have been some enormous advances in melanoma research over
      the last few years. The new treatments that are becoming available through
      clinical trials are allowing some people in this forum the ability to have very
      long periods of stable disease or NED (no evidence of disease).

      Hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      I joined this forum a couple of months ago, and since that time I have found
      that this is truly outstanding community of people. In fact, I feel that we are
      all members of the best melanoma forum in the world!

      There are some very knowledgeable people in this forum, who are really up to
      date with treatment options.

      Fortunately, there have been some enormous advances in melanoma research over
      the last few years. The new treatments that are becoming available through
      clinical trials are allowing some people in this forum the ability to have very
      long periods of stable disease or NED (no evidence of disease).

      Hope this helps.

      Frank from Australia

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      Carol Taylor
      Participant

      How are you this morning, Boot? Since you call yourself Boot2Boot, can I just call you "2B"?  What will be is yet 2B seen. The best is 2B. You get the drift.  "2B" sounds so positive and forward-looking!

      I hope you were able to get some rest, maybe even some sleep!. As your resolve deepens and you learn more and actually get a handle on where you really are with this (right now you really don't know), you'll find yourself learning to live with a new "normal" and you'll actually learn some valuable life-lessons you wouldn't have learned otherwise.  You'll see life and the world around you differently; for better or worse, you'll see it differently.  Your attitude will be key and it will help you immensely to stay steady. Keep choosing to beat this!

      By all means, be lining up someone to go with you Wednesday and to future appts and it will be best if it's the same person.  Make sure that person goes everywhere you go and hears everything you hear. 

      Since we don't know your situation and you were alone last night, it may be that you may not have anyone nearby you feel you can call to take that on.  If, for whatever reason, you feel you don't have that person handy, please call the hospital and ask for whoever directs volunteers. That person may be able to line up a volunteer who'll go with you and be your buddy.  A local church may also have someone who'll do this for you.  Come back on this board, tell us where you live, and some of us may be able to help you in some way.  It really will be best if you don't try to go through this alone.  And last night may have just been last night and you DO have someone to walk with you.  Use that person and rely on them.

      OK, enough from me for now.  You have a great day, 2B.

      Grace and peace,

      Carol

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      Carol Taylor
      Participant

      How are you this morning, Boot? Since you call yourself Boot2Boot, can I just call you "2B"?  What will be is yet 2B seen. The best is 2B. You get the drift.  "2B" sounds so positive and forward-looking!

      I hope you were able to get some rest, maybe even some sleep!. As your resolve deepens and you learn more and actually get a handle on where you really are with this (right now you really don't know), you'll find yourself learning to live with a new "normal" and you'll actually learn some valuable life-lessons you wouldn't have learned otherwise.  You'll see life and the world around you differently; for better or worse, you'll see it differently.  Your attitude will be key and it will help you immensely to stay steady. Keep choosing to beat this!

      By all means, be lining up someone to go with you Wednesday and to future appts and it will be best if it's the same person.  Make sure that person goes everywhere you go and hears everything you hear. 

      Since we don't know your situation and you were alone last night, it may be that you may not have anyone nearby you feel you can call to take that on.  If, for whatever reason, you feel you don't have that person handy, please call the hospital and ask for whoever directs volunteers. That person may be able to line up a volunteer who'll go with you and be your buddy.  A local church may also have someone who'll do this for you.  Come back on this board, tell us where you live, and some of us may be able to help you in some way.  It really will be best if you don't try to go through this alone.  And last night may have just been last night and you DO have someone to walk with you.  Use that person and rely on them.

      OK, enough from me for now.  You have a great day, 2B.

      Grace and peace,

      Carol

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      boot2aboot
      Participant

      Hi Everyone ….thank you so much for your support…Carol, your little prayer worked so much last night…and i had a long coaching session with a shamanic healer friend last night, these things and the helpful comments on this board got me over the panic and grief…carol, i locked that bogeyman up….and turned toward doors of opportunity….

      i looked at my appt (they email appts now) and i messed up…my BIG DAY is TUESDAY, not wednesday…i will see Alicia TERANDO at OSU James Cancer Hospital in Columbus Ohio…I will see her and maybe get a second opinion at Cleveland Clinic…

      Yeah, i need another  person with me at my doctors office…i will probably grab a tape recorder too

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      boot2aboot
      Participant

      Hi Everyone ….thank you so much for your support…Carol, your little prayer worked so much last night…and i had a long coaching session with a shamanic healer friend last night, these things and the helpful comments on this board got me over the panic and grief…carol, i locked that bogeyman up….and turned toward doors of opportunity….

      i looked at my appt (they email appts now) and i messed up…my BIG DAY is TUESDAY, not wednesday…i will see Alicia TERANDO at OSU James Cancer Hospital in Columbus Ohio…I will see her and maybe get a second opinion at Cleveland Clinic…

      Yeah, i need another  person with me at my doctors office…i will probably grab a tape recorder too

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        Carol Taylor
        Participant

        Well, at least you don't have to wait till Wednesday! You sound like a different person today. A "take charge, I can beat this and I can do anything!" spirit works wonders, and you can't beat prayer!  (God works; prayer's a tool).

        Glad you've got a support system after all there with you, you sounded soooooo alone last night.

        The tape recorder is a great idea, but you can't hold it's hand, so be sure to take a person, too. All the best to you 2B!

        Grace and peace,

        Carol

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        Carol Taylor
        Participant

        Well, at least you don't have to wait till Wednesday! You sound like a different person today. A "take charge, I can beat this and I can do anything!" spirit works wonders, and you can't beat prayer!  (God works; prayer's a tool).

        Glad you've got a support system after all there with you, you sounded soooooo alone last night.

        The tape recorder is a great idea, but you can't hold it's hand, so be sure to take a person, too. All the best to you 2B!

        Grace and peace,

        Carol

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        boot2aboot
        Participant

        Oh, and could some of the veterans on this board tell me EXACTLY what i should ask?

        and, how to go about getting a SECOND opinion? I live in OHIO

        (Since i am no longer going to read scary stuff…at least for now)

        some more about me…

        Female, Divorced, No children, Caretaker of 85 year old mother….My work (which i will have to take a leave of absence) is fun…I work in film and theater(hence the boot2aboot-i travel)…my friends are scattered across the globe and i am sure a few are floating somewhere in outer space….

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        boot2aboot
        Participant

        Oh, and could some of the veterans on this board tell me EXACTLY what i should ask?

        and, how to go about getting a SECOND opinion? I live in OHIO

        (Since i am no longer going to read scary stuff…at least for now)

        some more about me…

        Female, Divorced, No children, Caretaker of 85 year old mother….My work (which i will have to take a leave of absence) is fun…I work in film and theater(hence the boot2aboot-i travel)…my friends are scattered across the globe and i am sure a few are floating somewhere in outer space….

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        FormerCaregiver
        Participant

        I feel that your melanoma onc will want to do more tests, especially a full PET
        scan. I would tend to be cautious about rushing to get a second opinion, as most
        oncs that I have met are reasonably competent. As for questions to ask, why
        don't you just make a list of anything that is worrying you before your
        appointment?  If the onc is any good, you will probably find that most of them
        will be answered without you having to ask.

        Please feel free to post the details of your test/scan results here so that the
        veterans in this forum can tell you what they think.

        Here is a link to old post that is about cases where the primary melanoma cannot
        be found: http://www.melanoma.org/community/mpip/all-who-have-unknown-primaries

        This is a direct link to a medical article about lymphadenectomy (lymph node
        removal): http://www.ncbi.nlm.nih.gov/pubmed/18235114

        Good luck for your appointment on Tuesday.

        Frank from Australia

        Loading spinner
        boot2aboot
        Participant

        Frank,

        both the NCBI and primaries site is helpful to me…thank you…now, about the unknown primary site…and this will be on my list….

        Last November i had an itchy mole on my shoulder blade  that grew puffy…Freaked out, i got my primary doctor to refer me to a derm asap and it was removed by a dermatologist at this melanoma clinic…i plumb forgot about it until my ONC explained Friday Evening that it was from the tissue sample of this mole that they figured out what the neoplasm under my armpit was…will they do a biopsy at this site? should i ask them to? it may have been the primary or…not…but geez, i want them to find the primary so this thing isn't seeding everywhere…

         

         

         

         

         

         

        Loading spinner
        FormerCaregiver
        Participant

        It sounds like the itchy mole on your shoulder could have been the primary
        lesion. How long had it been bothering you? Was it very big? Melanoma cells can
        spread via the lymphatic system and/or the bloodstream depending on the depth of
        the initial lesion.

        They could do a biopsy, but they may prefer to rely on the results of a PET
        scan. This scan will show if the melanoma has spread any further. Here is some
        info about the PET scans:
        http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=1846
        This article says that "… PET imaging is a useful non-invasive test for
        detection of sub clinical lymph nodes and metastasis. It is also very useful
        in evaluating suspicious findings on CT scan or MRI".

        I don't know if a biopsy is essential, but it might be done to confirm the
        diagnosis of the neoplasm under your armpit.

        Hope this helps.

        Frank from Australia

        Loading spinner
        FormerCaregiver
        Participant

        It sounds like the itchy mole on your shoulder could have been the primary
        lesion. How long had it been bothering you? Was it very big? Melanoma cells can
        spread via the lymphatic system and/or the bloodstream depending on the depth of
        the initial lesion.

        They could do a biopsy, but they may prefer to rely on the results of a PET
        scan. This scan will show if the melanoma has spread any further. Here is some
        info about the PET scans:
        http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=1846
        This article says that "… PET imaging is a useful non-invasive test for
        detection of sub clinical lymph nodes and metastasis. It is also very useful
        in evaluating suspicious findings on CT scan or MRI".

        I don't know if a biopsy is essential, but it might be done to confirm the
        diagnosis of the neoplasm under your armpit.

        Hope this helps.

        Frank from Australia

        Loading spinner
        boot2aboot
        Participant

        Frank,

        both the NCBI and primaries site is helpful to me…thank you…now, about the unknown primary site…and this will be on my list….

        Last November i had an itchy mole on my shoulder blade  that grew puffy…Freaked out, i got my primary doctor to refer me to a derm asap and it was removed by a dermatologist at this melanoma clinic…i plumb forgot about it until my ONC explained Friday Evening that it was from the tissue sample of this mole that they figured out what the neoplasm under my armpit was…will they do a biopsy at this site? should i ask them to? it may have been the primary or…not…but geez, i want them to find the primary so this thing isn't seeding everywhere…

         

         

         

         

         

         

        Loading spinner
        FormerCaregiver
        Participant

        I feel that your melanoma onc will want to do more tests, especially a full PET
        scan. I would tend to be cautious about rushing to get a second opinion, as most
        oncs that I have met are reasonably competent. As for questions to ask, why
        don't you just make a list of anything that is worrying you before your
        appointment?  If the onc is any good, you will probably find that most of them
        will be answered without you having to ask.

        Please feel free to post the details of your test/scan results here so that the
        veterans in this forum can tell you what they think.

        Here is a link to old post that is about cases where the primary melanoma cannot
        be found: http://www.melanoma.org/community/mpip/all-who-have-unknown-primaries

        This is a direct link to a medical article about lymphadenectomy (lymph node
        removal): http://www.ncbi.nlm.nih.gov/pubmed/18235114

        Good luck for your appointment on Tuesday.

        Frank from Australia

        Loading spinner
        lhaley
        Participant

        You will know pretty quickly if you trust your melanoma specialist.  People go for 2nd opinions for various reasons. Many times if your specialist cannot offer you a treatment then many will move on to another Dr.  Some specialists help you find treatments at different centers and some will only discuss what  they can offer. 

        Many large cancer centers have a tumor board. They discuss your case amongst a team and your presented after they meet with the options.  With my last 2 recurrances my Dr. called me and discussed what was going on and asked for my opinion. Then I got a phone call afterwards telling me the recommendations. I have to travel so for some this is done in person. I see 3 different Doctors at the cancer center.  My melanoma specialist, an oncology surgeon who happens to also be an immunologist, and a urology oncologist (my mel went to the bladder twice). Each one of these men are special as well as their nurses.  I'm having some issues right now and my local Dr. ordered an ultrasound and they discovered that my gallbladder is bad, also discovered incidently a few enlarged nodes.  I e-mailed my melanoma specialist late Thursday night, by Friday morning I had an answer (I also found out he was on vacation!) he asked me a few details and I e-mailed him back. His follow up e-mail was to wish me well with my surgery!  His nurse called me 2 hours later. He had e-mailed her and asked her to follow up.  It's important to have a good repore with your Dr. and to be able to reach them to ask those inbetween appointment questions!   He had me mail him the CD of my latest scan and he is going to compare it with my last exam I had there.  I had given the local hospital a copy of my last scan but on the report they state that they had nothing to compare with…. grrrrrr    

        I also have a local oncologist just incase there is an immediate need.  When I contact any of my Drs. I can tell that they immediately know who I am and they remember my information.  This doesn't happen with just one visit.  I hope that you and your Dr. are a good fit for each other!  One question you might want to ask is if their hospital doesn't offer a trial for you (if needed) are they willing, or do they have staff that is willing to help you find a place that does offer the right treatment.

        Keep a personal copy of all reports and cd's of scans. Get a big notebook and keep everything together. 

        Let us know how it goes!

        Linda

        Loading spinner
        lhaley
        Participant

        You will know pretty quickly if you trust your melanoma specialist.  People go for 2nd opinions for various reasons. Many times if your specialist cannot offer you a treatment then many will move on to another Dr.  Some specialists help you find treatments at different centers and some will only discuss what  they can offer. 

        Many large cancer centers have a tumor board. They discuss your case amongst a team and your presented after they meet with the options.  With my last 2 recurrances my Dr. called me and discussed what was going on and asked for my opinion. Then I got a phone call afterwards telling me the recommendations. I have to travel so for some this is done in person. I see 3 different Doctors at the cancer center.  My melanoma specialist, an oncology surgeon who happens to also be an immunologist, and a urology oncologist (my mel went to the bladder twice). Each one of these men are special as well as their nurses.  I'm having some issues right now and my local Dr. ordered an ultrasound and they discovered that my gallbladder is bad, also discovered incidently a few enlarged nodes.  I e-mailed my melanoma specialist late Thursday night, by Friday morning I had an answer (I also found out he was on vacation!) he asked me a few details and I e-mailed him back. His follow up e-mail was to wish me well with my surgery!  His nurse called me 2 hours later. He had e-mailed her and asked her to follow up.  It's important to have a good repore with your Dr. and to be able to reach them to ask those inbetween appointment questions!   He had me mail him the CD of my latest scan and he is going to compare it with my last exam I had there.  I had given the local hospital a copy of my last scan but on the report they state that they had nothing to compare with…. grrrrrr    

        I also have a local oncologist just incase there is an immediate need.  When I contact any of my Drs. I can tell that they immediately know who I am and they remember my information.  This doesn't happen with just one visit.  I hope that you and your Dr. are a good fit for each other!  One question you might want to ask is if their hospital doesn't offer a trial for you (if needed) are they willing, or do they have staff that is willing to help you find a place that does offer the right treatment.

        Keep a personal copy of all reports and cd's of scans. Get a big notebook and keep everything together. 

        Let us know how it goes!

        Linda

        Loading spinner
      archer
      Participant

      I feel like I should comment since this is what we went through almost exactly two weeks ago.  My wife found a lump in the armpit, had a biopsy, then 3 weeks later, they ask for more tissue so she had it removed and after another 3 weeks, we got the path report, metastasized melanoma.  That was 2 weeks ago.  When we received the news, the world stopped and turned upside down.  Not only were we blown away but we were thrown into a world that we knew nothing about and we were told things that didn't make any sense.  My wife was the one diagnosed but I was in worse shape than her.

      Luckily, I found this site, began to write on this bulletin board and had replies from the greatest people.  The replies not only provided us with information but it also boosted our confidence and the one or two suggestions that were loud and clear were……. go to a melanoma specialist and don't loose hope.  Like you we found out on a Friday and for the first week especially, I was a notch above a zombie.   So, when you talk about your anxiety, confusion etc,…. everyone on this board can relate. 

      You asked about second opinions etc.  We were referred to a local oncologist and we went there once and then a couple of days later went to the specialist.  For us, this was the best decision we made.  A world of difference in everything that happened upon meeting the specialist.  So, from this meeting, a PET scan was scheduled, blood draws a complete look at her body from a dermatologist and a discussion with the surgical team.  That happened all within 2 days of our first visit with the specialist.  Thank God, her PET scan was clear and that is what we were hoping for.  I believe once you talk to your specialist, you will have a lot of questions answered and some direction.  We were told that same thing and it came true.  Trust the advice you receive on her and keep your attitude positive.  (that is coming from someone who couldn't do that one week ago)  Best wishes and stay in contact with these people…..

      Loading spinner
        Carol Taylor
        Participant

        Why, Archer!  You're sounding like an old pro at this!  Good for you and good for your missus!  She's lucky to have a former zombie like you in her corner.  I couldn't have gotten through it like I did without mine.  All of our spouses, or other loved ones, who stick with us through all this are heroes.

        2B, and Archer & Mrs. Archer, have a blessed Sunday and keep us posted.

        Loading spinner
        boot2aboot
        Participant

        i had a CT scan…what is the difference between a full body CT scan and a pet scan?

        i imagine they will probably give me a seperate brain MRI?

        and everyone seems to be partnered up on this board are there any singles facing this and who goes with you to the treatments?

        Loading spinner
        Vermont_Donna
        Participant

        Hi,

        Sorry you have had to receive a melanoma diagnosis but glad you have found your way to this site and bulletin board. I'll let others explain the difference in testing but of note is that my melanoma oncologist orders my PET scans WITH a CT scan at the same time…they are used to contrast and compare each other. Brain MRI's are not an automatic test docs order, usually there are symptoms or some underlying question, or they are required to enter a clinical trial.

        I am long divorced and not "partnered up"….I feel comfortable going to medical appointments by myself but my mom usually goes with me. She is a retired LPN from the medical center where I receive treatment. She also lives 10 miles from the medical center and I travel 90 miles one way to get there. I often stay with my folks before treatments, after treatments, surgeries, appointments, etc over the last five years. Its good for all of ours mental health!!   I worked as a hospital social worker and also as a pediatric medical social worker for 10 years so I feel quite comfortable around doctors, hospitals, and discussing procedures, etc. Every doctor I have encountered has commented that I am a very well informed and educated consumer/patient. Plus I have learned how to make the most of a "doctor's time"…not that I have ever felt pushed out the door by my cancer team. I go to visits with questions, sometimes written down, especially in the beginning, but I always have questions and we are sure to discuss what those are. iIask for everything to be explained to me if I dont understand it, I have copies of all my medical records (usually every 3 to 4 months write and ask for all the records and yes I pay a copying fee per the medical center protocol). I do not get the CD's of scans, ie PET/CT scans, MRI's etc…I do always get the results though. I keep all appointment letters and EOB's (explanation of benefits paid) from my insurance company.

        Good luck with your Tuesday appointment!

        You can read my profile for further history if so desired….

        Vermont_Donna, stage 3a

        Loading spinner
        boot2aboot
        Participant

        Thanks Donna,

        it is good to know you are one tough lady and i can be too….i am sure they will do the CT/Pet thingy on me too…

        Loading spinner
        boot2aboot
        Participant

        Thanks Donna,

        it is good to know you are one tough lady and i can be too….i am sure they will do the CT/Pet thingy on me too…

        Loading spinner
        boot2aboot
        Participant

        Thanks Donna,

        it is good to know you are one tough lady and i can be too….i am sure they will do the CT/Pet thingy on me too…

        Loading spinner
        boot2aboot
        Participant

        Thanks Donna,

        it is good to know you are one tough lady and i can be too….i am sure they will do the CT/Pet thingy on me too…

        Loading spinner
        boot2aboot
        Participant

        Thanks Donna,

        it is good to know you are one tough lady and i can be too….i am sure they will do the CT/Pet thingy on me too…

        Loading spinner
        boot2aboot
        Participant

        Thanks Donna,

        it is good to know you are one tough lady and i can be too….i am sure they will do the CT/Pet thingy on me too…

        Loading spinner
        Vermont_Donna
        Participant

        Hi,

        Sorry you have had to receive a melanoma diagnosis but glad you have found your way to this site and bulletin board. I'll let others explain the difference in testing but of note is that my melanoma oncologist orders my PET scans WITH a CT scan at the same time…they are used to contrast and compare each other. Brain MRI's are not an automatic test docs order, usually there are symptoms or some underlying question, or they are required to enter a clinical trial.

        I am long divorced and not "partnered up"….I feel comfortable going to medical appointments by myself but my mom usually goes with me. She is a retired LPN from the medical center where I receive treatment. She also lives 10 miles from the medical center and I travel 90 miles one way to get there. I often stay with my folks before treatments, after treatments, surgeries, appointments, etc over the last five years. Its good for all of ours mental health!!   I worked as a hospital social worker and also as a pediatric medical social worker for 10 years so I feel quite comfortable around doctors, hospitals, and discussing procedures, etc. Every doctor I have encountered has commented that I am a very well informed and educated consumer/patient. Plus I have learned how to make the most of a "doctor's time"…not that I have ever felt pushed out the door by my cancer team. I go to visits with questions, sometimes written down, especially in the beginning, but I always have questions and we are sure to discuss what those are. iIask for everything to be explained to me if I dont understand it, I have copies of all my medical records (usually every 3 to 4 months write and ask for all the records and yes I pay a copying fee per the medical center protocol). I do not get the CD's of scans, ie PET/CT scans, MRI's etc…I do always get the results though. I keep all appointment letters and EOB's (explanation of benefits paid) from my insurance company.

        Good luck with your Tuesday appointment!

        You can read my profile for further history if so desired….

        Vermont_Donna, stage 3a

        Loading spinner
        boot2aboot
        Participant

        i had a CT scan…what is the difference between a full body CT scan and a pet scan?

        i imagine they will probably give me a seperate brain MRI?

        and everyone seems to be partnered up on this board are there any singles facing this and who goes with you to the treatments?

        Loading spinner
        Carol Taylor
        Participant

        Why, Archer!  You're sounding like an old pro at this!  Good for you and good for your missus!  She's lucky to have a former zombie like you in her corner.  I couldn't have gotten through it like I did without mine.  All of our spouses, or other loved ones, who stick with us through all this are heroes.

        2B, and Archer & Mrs. Archer, have a blessed Sunday and keep us posted.

        Loading spinner
      archer
      Participant

      I feel like I should comment since this is what we went through almost exactly two weeks ago.  My wife found a lump in the armpit, had a biopsy, then 3 weeks later, they ask for more tissue so she had it removed and after another 3 weeks, we got the path report, metastasized melanoma.  That was 2 weeks ago.  When we received the news, the world stopped and turned upside down.  Not only were we blown away but we were thrown into a world that we knew nothing about and we were told things that didn't make any sense.  My wife was the one diagnosed but I was in worse shape than her.

      Luckily, I found this site, began to write on this bulletin board and had replies from the greatest people.  The replies not only provided us with information but it also boosted our confidence and the one or two suggestions that were loud and clear were……. go to a melanoma specialist and don't loose hope.  Like you we found out on a Friday and for the first week especially, I was a notch above a zombie.   So, when you talk about your anxiety, confusion etc,…. everyone on this board can relate. 

      You asked about second opinions etc.  We were referred to a local oncologist and we went there once and then a couple of days later went to the specialist.  For us, this was the best decision we made.  A world of difference in everything that happened upon meeting the specialist.  So, from this meeting, a PET scan was scheduled, blood draws a complete look at her body from a dermatologist and a discussion with the surgical team.  That happened all within 2 days of our first visit with the specialist.  Thank God, her PET scan was clear and that is what we were hoping for.  I believe once you talk to your specialist, you will have a lot of questions answered and some direction.  We were told that same thing and it came true.  Trust the advice you receive on her and keep your attitude positive.  (that is coming from someone who couldn't do that one week ago)  Best wishes and stay in contact with these people…..

      Loading spinner
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The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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