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Was Just told I had this

Forums General Melanoma Community Was Just told I had this

  • Post

    Went to the doctor with what I thought was swollen glands and now I have Melanoma and awaiting for them to get me into MD Anderson to get it removed. I don't have the stage but the PET scan says that it has remained in my neck. Anybody got a clue what I am facing the doctor seems to have abandoned me. It is very stressful

     

    Mack under the Knife

    Went to the doctor with what I thought was swollen glands and now I have Melanoma and awaiting for them to get me into MD Anderson to get it removed. I don't have the stage but the PET scan says that it has remained in my neck. Anybody got a clue what I am facing the doctor seems to have abandoned me. It is very stressful

     

    Mack under the Knife

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  • Replies
      washoegal
      Participant

      Mack, a little unclear from your post.  Did they find a mole (ie a primary)?  Sounds like you have it in the lymph nodes and they will remove at least the sentinel lymph nodes, maybe more if deemed necessary.  Pretty good prognosis if mel is confined to lymph nodes.  I didn't have it in the neck, mine were in the arm, so it's probably quite different but the surgery for me was fairly easy.  Many people here go to MD Anderson and are quite pleased, I hope you hear from them. 

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      washoegal
      Participant

      Mack, a little unclear from your post.  Did they find a mole (ie a primary)?  Sounds like you have it in the lymph nodes and they will remove at least the sentinel lymph nodes, maybe more if deemed necessary.  Pretty good prognosis if mel is confined to lymph nodes.  I didn't have it in the neck, mine were in the arm, so it's probably quite different but the surgery for me was fairly easy.  Many people here go to MD Anderson and are quite pleased, I hope you hear from them. 

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      Kevin from Atlanta
      Participant

      Your doctor is not abanding you but making sure you see the right people. Onocologist that deal mostly with melanoma. At the minimum surgery to remove the cancer and perhaps some of the surrounding lymph nodes. The staging will dictate the treatments. Fear of the unkown is always stressful and unfortunitly it will worsen as it get closer to the results. Please let us know the results.

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      Kevin from Atlanta
      Participant

      Your doctor is not abanding you but making sure you see the right people. Onocologist that deal mostly with melanoma. At the minimum surgery to remove the cancer and perhaps some of the surrounding lymph nodes. The staging will dictate the treatments. Fear of the unkown is always stressful and unfortunitly it will worsen as it get closer to the results. Please let us know the results.

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      dian in spokane
      Participant

      Mack,

      Welcome to the board. Sorry you have to face this shocking diagnosis. It sounds like they have not yet found a primary melanoma, and that your PET showed no organ involvement. That likely makes you stage III with an 'unknown primary' Though you can expect to have doctors inspecting you trying to find that primary. Right now, the primary or lack of one is less important that the acuality of your stage III disease.

      Don't worry about your doctor abandoning you. In my opinion,  one of the differences between a good doctor and a great one is the ability to recognise when one is out of one's depth. Melanoma originating in the head and neck is VERY serious, and sending you to MDA is the right call. Going directly to the big guns is what you need.

      Another thing you need is to read and get up to speed on this disease, which you might not have known a single thing about a few weeks ago. Despite the fact that MDA has great doctors, you still need to be deeply involved in your own treatment decisions.

      You may be facing more surgery, if they think they can get clear margins, and/or localizes radiation. They might discuss chemotherapy or some kind of biochemo, but MDA is also involved in several cutting edge clinical trials, and most would agree that, because of the poor treatment options availalbe for higher staged melanoma, I clinical trials hold the best hope.

      Having said all of this, I'd offer some encouragment too. You'll likely read a lot of really grim stats on the web, but right here at the MPIP, we've got quite a few success stories, people who've been living with melanoma for many years (my initial stage 1 diagnosis was in 1983.. I advanced to stage 3 in 03, and stage 4 in 08)

      and.. John McCain had melanoma centered in his neck..and still ran for president!

      Keep your spirits up. This is a fine site for support and educations and networking. If you have some sleepless nights, get on here and learn to search the archives and patnet to bring yourself up to speed.

      Good luck!

       

      dian in spokane

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      dian in spokane
      Participant

      Mack,

      Welcome to the board. Sorry you have to face this shocking diagnosis. It sounds like they have not yet found a primary melanoma, and that your PET showed no organ involvement. That likely makes you stage III with an 'unknown primary' Though you can expect to have doctors inspecting you trying to find that primary. Right now, the primary or lack of one is less important that the acuality of your stage III disease.

      Don't worry about your doctor abandoning you. In my opinion,  one of the differences between a good doctor and a great one is the ability to recognise when one is out of one's depth. Melanoma originating in the head and neck is VERY serious, and sending you to MDA is the right call. Going directly to the big guns is what you need.

      Another thing you need is to read and get up to speed on this disease, which you might not have known a single thing about a few weeks ago. Despite the fact that MDA has great doctors, you still need to be deeply involved in your own treatment decisions.

      You may be facing more surgery, if they think they can get clear margins, and/or localizes radiation. They might discuss chemotherapy or some kind of biochemo, but MDA is also involved in several cutting edge clinical trials, and most would agree that, because of the poor treatment options availalbe for higher staged melanoma, I clinical trials hold the best hope.

      Having said all of this, I'd offer some encouragment too. You'll likely read a lot of really grim stats on the web, but right here at the MPIP, we've got quite a few success stories, people who've been living with melanoma for many years (my initial stage 1 diagnosis was in 1983.. I advanced to stage 3 in 03, and stage 4 in 08)

      and.. John McCain had melanoma centered in his neck..and still ran for president!

      Keep your spirits up. This is a fine site for support and educations and networking. If you have some sleepless nights, get on here and learn to search the archives and patnet to bring yourself up to speed.

      Good luck!

       

      dian in spokane

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      Jackie W
      Participant

      When my husband was first diagnosed, we were also referred to MDA.  With MM, you need a specialist in that field and they have some of the tops.  I think your doctor did the best thing in referring you to them.  I can tell you, from personal experience, that they are wonderful.

       

      Best of luck.

       

      Jackie W 

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      Jackie W
      Participant

      When my husband was first diagnosed, we were also referred to MDA.  With MM, you need a specialist in that field and they have some of the tops.  I think your doctor did the best thing in referring you to them.  I can tell you, from personal experience, that they are wonderful.

       

      Best of luck.

       

      Jackie W 

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      Well thanks everybody. They are not sure if a mole removed from next to my ear years ago that was said to be clean hand cancer. The doctors are asking for the pathology reports. I keep reading all this stuff and I just realized that I forgot to add that I also suffer from Ulcerative colitis. I have been on Remicade for almost 8 years. Now this is just another thing in the string. I face everything with a positive outlook but the doctor I had made it difficult. He broke the news over the phone and when I questioned why he got irrate saying he knew what was best for me and I should just listen. Then nothing for several days. I have now been contacted by MDA and will go the sept 2nd. I am happy and nervous. I want this out of my body and I want to know what I can do to keep it gone

       

      Sounds like it will come back but this is a fight I intend to we

       

      Thanks everybody

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        gpayne68
        Participant

        Just read your post and it's been a couple of weeks since you posted.  How are you doing?  Have you made it into MD Anderson?  Keep us updated and keep fighting.  Better days are ahead.

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        gpayne68
        Participant

        Just read your post and it's been a couple of weeks since you posted.  How are you doing?  Have you made it into MD Anderson?  Keep us updated and keep fighting.  Better days are ahead.

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        Well This may not post the way I want but here goes. Thanks to all the people that replied and told me in nicer words to stop whinning and start finding things out. As I researched I found that more doctors give the news of cancer over the phone then face to face. I was amazed but have a better outlook now. I have been at M D Anderson on and of now for the past 2 weeks and it is an amazing place. They have a system like no other hospital. I was seen by several specialist in a single day. I found out that I have had this Melanoma since I had a mole was removed from the side of my face in 2006. The pathologist misread or did not read the slides. At the same site another mole the size of a pinhead was coming back so they have said this is stage 3 melanoma. They will do a right side neck dissection with lymph node removal on Monday Sept 20th. The doctor has said that I will be receiving Radiation after that, He has cautioned that the outlook is good but they will know more after surgery. My head is in a better place now that I have the information I need to understand the how and why's. I have started the paperwork to have the medical board look into the pathologist that reported the incorrect results. I am fine with the fact that I have cancer and I will continue to fight it and will win the battles I can and live through the ones I can't. Again I say thanks to all the strangers that have come into my life allowing me to hear their stories and to rejoice in their victories.

        Mack under the Knife</p>

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        dian in spokane
        Participant

        Mack! I'm so glad you posted. I"ve been wondering if you'd made it to MDA yet, and how things were going.

        I'm sorry you had to find out that someone dropped the ball on you back in 06, you'd be surprised how many times over the years that I've heard other such stories, some much worse.

        But…you are right not to let it weigh on you too much, nothing can be done to correct what's in the past..you ae in great hands now!

         

        Please keep us posted on how things proceed.

         

        Good luck with your surgery, recovery, and treatments.

         

        dian in spokane

        waltzing with melanoma since 1983

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        dian in spokane
        Participant

        Mack! I'm so glad you posted. I"ve been wondering if you'd made it to MDA yet, and how things were going.

        I'm sorry you had to find out that someone dropped the ball on you back in 06, you'd be surprised how many times over the years that I've heard other such stories, some much worse.

        But…you are right not to let it weigh on you too much, nothing can be done to correct what's in the past..you ae in great hands now!

         

        Please keep us posted on how things proceed.

         

        Good luck with your surgery, recovery, and treatments.

         

        dian in spokane

        waltzing with melanoma since 1983

        Loading spinner

        Well This may not post the way I want but here goes. Thanks to all the people that replied and told me in nicer words to stop whinning and start finding things out. As I researched I found that more doctors give the news of cancer over the phone then face to face. I was amazed but have a better outlook now. I have been at M D Anderson on and of now for the past 2 weeks and it is an amazing place. They have a system like no other hospital. I was seen by several specialist in a single day. I found out that I have had this Melanoma since I had a mole was removed from the side of my face in 2006. The pathologist misread or did not read the slides. At the same site another mole the size of a pinhead was coming back so they have said this is stage 3 melanoma. They will do a right side neck dissection with lymph node removal on Monday Sept 20th. The doctor has said that I will be receiving Radiation after that, He has cautioned that the outlook is good but they will know more after surgery. My head is in a better place now that I have the information I need to understand the how and why&#39;s. I have started the paperwork to have the medical board look into the pathologist that reported the incorrect results. I am fine with the fact that I have cancer and I will continue to fight it and will win the battles I can and live through the ones I can't. Again I say thanks to all the strangers that have come into my life allowing me to hear their stories and to rejoice in their victories.

        Mack under the Knife</p>

        Loading spinner

      Well thanks everybody. They are not sure if a mole removed from next to my ear years ago that was said to be clean hand cancer. The doctors are asking for the pathology reports. I keep reading all this stuff and I just realized that I forgot to add that I also suffer from Ulcerative colitis. I have been on Remicade for almost 8 years. Now this is just another thing in the string. I face everything with a positive outlook but the doctor I had made it difficult. He broke the news over the phone and when I questioned why he got irrate saying he knew what was best for me and I should just listen. Then nothing for several days. I have now been contacted by MDA and will go the sept 2nd. I am happy and nervous. I want this out of my body and I want to know what I can do to keep it gone

       

      Sounds like it will come back but this is a fight I intend to we

       

      Thanks everybody

      Loading spinner
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