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multiple nodes involved, can I survive??

Forums General Melanoma Community multiple nodes involved, can I survive??

  • Post
    Linda J
    Participant

    I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

    I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

    I am upset because the MRI showed that there are several lymph nodes involved and one of them is "deeper".  The deeper one is about 1cm.  Am I doomed because there are several lymph nodes involved???  Have other people had multiple lymph node involvments and still are doing well today??

    They are going to see if the tumor in my side reacts to any of the the inhibitors so that hopefully I can do a clinical trial.

    I am just so so so devestated right now.  I feel hopeless and I would really really like to hear that it is possible to survive a large tumor with multiple  and deeper lymph nodes involved. 

    Please respond.  Thank you

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  • Replies
      King
      Participant

      Linda,

      It is normal to feel overwhelmed as the bad news comes in.  However,  as you absorb this news, you must put on your fighting gear and think positive.  Anything is possible.  I can't comment on your specific area of mets nor your treatment plan.  However, there have been many times that scan results weren't looking good for me and I'm still here with a decent quality of life.  A tumor on my liver was 4.5 cm!  Your situation is far from hopeless and you have to believe that.

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Linda,

      It is normal to feel overwhelmed as the bad news comes in.  However,  as you absorb this news, you must put on your fighting gear and think positive.  Anything is possible.  I can't comment on your specific area of mets nor your treatment plan.  However, there have been many times that scan results weren't looking good for me and I'm still here with a decent quality of life.  A tumor on my liver was 4.5 cm!  Your situation is far from hopeless and you have to believe that.

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      Jerry from Cape Cod
      Participant

      The short answer is you're not doomed and yes there are survivors with multiple hot lymph nodes.

      I'm sure that many of them will post replies to you. 

      My course was a bit different than your's.  I never had the opportunity to catch the disease at the lymph nodes as I went from Stage I to Stage IV with multiple organ involvement.  I'm doing well, not clear of the disease, but fighting the battle with a great medical team.

      The unfortunate consequence of the new forum is that it is not easy for new visitors to see the depth of experiences that our members have.  I'm sure that you will hear from many of them

       

      Jerry from Cape Cod.

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      Jerry from Cape Cod
      Participant

      The short answer is you're not doomed and yes there are survivors with multiple hot lymph nodes.

      I'm sure that many of them will post replies to you. 

      My course was a bit different than your's.  I never had the opportunity to catch the disease at the lymph nodes as I went from Stage I to Stage IV with multiple organ involvement.  I'm doing well, not clear of the disease, but fighting the battle with a great medical team.

      The unfortunate consequence of the new forum is that it is not easy for new visitors to see the depth of experiences that our members have.  I'm sure that you will hear from many of them

       

      Jerry from Cape Cod.

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      washoegal
      Participant

      I had two lymph nodes involved and my Onc is very positive about my prognosis.  Of course it would have been nice to catch it before it traveled to the lymph nodes but as long as ther is no organ involvement we're ahead of the game from my point of view.  Attitude will have everything to do with how well you heal, so you really need to pull youself together and decide you are ready to do battle.

       

      Mary K

      Stage 3

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      washoegal
      Participant

      I had two lymph nodes involved and my Onc is very positive about my prognosis.  Of course it would have been nice to catch it before it traveled to the lymph nodes but as long as ther is no organ involvement we're ahead of the game from my point of view.  Attitude will have everything to do with how well you heal, so you really need to pull youself together and decide you are ready to do battle.

       

      Mary K

      Stage 3

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      DebbieH
      Participant

      Many of us have been where you are now and we understand how you're feeling.  It's just overwhelming and if I hadn't had this place I don't know what I would have done.  It was only when I saw others in my situation who were doing well years after their diagnosis that I was able to take a deep breath and start fighting.

      My lymph nodes were in the axillary area (armpit), and I had three positive nodes, however one had turned into a 6 centimeter mass and the extensions from another had engulfed a muscle in my back so that was also removed.  This put me at stage IIIC and all I was hearing was how there was "no cure" for this. 

      I'm still here, and WELL, nearly 9 years later.  I haven't seen a doctor in years and they've "cut me loose".  Since you never know with disease, I always just say – so far so good, but it's been a wonderful 9 years and I look forward to more.  I had surgery to remove all the nodes and then did interferon.  Others are doing well who've done other treatments and some who have done the watch and wait are also fine YEARS later. 

      Good luck to you.  Things WILL look better and take hope in those you see here who are doing well at every stage. 

      DebbieH

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      DebbieH
      Participant

      Many of us have been where you are now and we understand how you're feeling.  It's just overwhelming and if I hadn't had this place I don't know what I would have done.  It was only when I saw others in my situation who were doing well years after their diagnosis that I was able to take a deep breath and start fighting.

      My lymph nodes were in the axillary area (armpit), and I had three positive nodes, however one had turned into a 6 centimeter mass and the extensions from another had engulfed a muscle in my back so that was also removed.  This put me at stage IIIC and all I was hearing was how there was "no cure" for this. 

      I'm still here, and WELL, nearly 9 years later.  I haven't seen a doctor in years and they've "cut me loose".  Since you never know with disease, I always just say – so far so good, but it's been a wonderful 9 years and I look forward to more.  I had surgery to remove all the nodes and then did interferon.  Others are doing well who've done other treatments and some who have done the watch and wait are also fine YEARS later. 

      Good luck to you.  Things WILL look better and take hope in those you see here who are doing well at every stage. 

      DebbieH

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      KatyWI
      Participant

      Whenever I get freaked out, I go back an read this guy's story:

      http://clinicalresearch.nih.gov/stories_breidenbach.html 

      He had tumor involvement in HALF his liver.  That's really darn big.  It's not so much the treatment that encourages me, because people can and do have amazing responses to a range of treatments.  It's the reminder never to give up – some of us are blessedly lucky and some of us DO beat this thing.

      KatyWI, stage IV NED 4 months and trying very hard not to completely FREAK OUT about scans next week. surprise

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        JenC
        Participant

        KatyWI – I liked that story – thanks for posting!

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        JenC
        Participant

        KatyWI – I liked that story – thanks for posting!

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      KatyWI
      Participant

      Whenever I get freaked out, I go back an read this guy's story:

      http://clinicalresearch.nih.gov/stories_breidenbach.html 

      He had tumor involvement in HALF his liver.  That's really darn big.  It's not so much the treatment that encourages me, because people can and do have amazing responses to a range of treatments.  It's the reminder never to give up – some of us are blessedly lucky and some of us DO beat this thing.

      KatyWI, stage IV NED 4 months and trying very hard not to completely FREAK OUT about scans next week. surprise

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      JoanR
      Participant

      Might I suggest a PET/CT scan ? They are available in TO. Ontario lags far behind in Melanoma treatment, and my suggestions to you would be to call Dr.Micheal Smylie at the Cross Cancer centre in Edmonton. I believe him to be the foremost Melanoma specialist in Canada. At least talk to his office and see about a second opinion…Many Canadian patients on MPIP have either seen or talked to Dr.Smylie, he is remarkable..good luck and let us know what you decide.

      You have lots of options and most importantly many reasons to be very hopeful.

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      JoanR
      Participant

      Might I suggest a PET/CT scan ? They are available in TO. Ontario lags far behind in Melanoma treatment, and my suggestions to you would be to call Dr.Micheal Smylie at the Cross Cancer centre in Edmonton. I believe him to be the foremost Melanoma specialist in Canada. At least talk to his office and see about a second opinion…Many Canadian patients on MPIP have either seen or talked to Dr.Smylie, he is remarkable..good luck and let us know what you decide.

      You have lots of options and most importantly many reasons to be very hopeful.

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      Phyllis in IA
      Participant

      My husband had nearly 60 positive nodes in his armpit and up into his neck back in '98.  I know what you mean about feeling devastated.  From what we read, and the vibes we got from doctors, we didn't think there was much hope.  But amazingly enough, he has passed the 11-year mark being NED.  I even lost track and I think I posted a couple of months ago that it was 10 years, and later realized that another year had gone by.  So it doesn't consume our lives any more, though we do continue to be very grateful and realize how blessed we are.  Just hope this can give you some encouragement to not give up.  It is far from hopeless! 

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      Phyllis in IA
      Participant

      My husband had nearly 60 positive nodes in his armpit and up into his neck back in '98.  I know what you mean about feeling devastated.  From what we read, and the vibes we got from doctors, we didn't think there was much hope.  But amazingly enough, he has passed the 11-year mark being NED.  I even lost track and I think I posted a couple of months ago that it was 10 years, and later realized that another year had gone by.  So it doesn't consume our lives any more, though we do continue to be very grateful and realize how blessed we are.  Just hope this can give you some encouragement to not give up.  It is far from hopeless! 

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