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Melanoma found in lymph node – Lymphectomy, Pet Scan next

Forums General Melanoma Community Melanoma found in lymph node – Lymphectomy, Pet Scan next

  • Post
    Renate
    Participant

    Hello!  I am brand new to this forum.  I was diagnosed with Melanoma 2 weeks ago – 1.3mm invasive spindle cell melanoma on my thigh.  I had surgery last week and they were successful at removing it all but did find microscopic melanoma cells in 1 lymph node.  Having Pet Scan and MRI on Friday and see DR on Monday.  He said I will need to remove the lymph nodes in my groin.  Im trying to stay present and not let my mind race – I have to beautiful boys to raise.  Can anyone tell me what to expect – I know i need those scans back.  Im most curiious about how will my leg be affected – do I have to wera a sleeve?  Do I have to trake interferon?  Should I?  Is this a life sentence now?  Thank you for any input.  I know Ill have to wait and see but trying to be proactive.

Viewing 11 reply threads
  • Replies
      Renate
      Participant

      Sorry for all the typos!!!  I was impatient – any way to edit a post? lol

       

      Renate
      Participant

      Sorry for all the typos!!!  I was impatient – any way to edit a post? lol

       

        jmm1052
        Participant

        Hi, 

        My husband was just diagnosed also- he had a swollen lymph node in his groin and finally was diagnosed with Melanoma- no evidence of where or when it began. He had the lymph node ( large one) plus 11 others removed. He is having some fluid retention issues and the incision isn't healing as quickly as we had hoped because of the internal pressure from the fluid. He wears a sleeve on that leg and still has a drain. It's been 2 1/2 weeks so really not too concerning yet. 

        His surgeon said the only way to be sure all the micro cells have been removed is to take out the whole section in one large piece. It was a 4 hr procedure and he did great. He has told him he is NED because of this so we are thrilled. He starts the ipi March 10. Before you put off the surgery, check all the sources you can to make your decision. 

         

        jmm1052
        Participant

        Hi, 

        My husband was just diagnosed also- he had a swollen lymph node in his groin and finally was diagnosed with Melanoma- no evidence of where or when it began. He had the lymph node ( large one) plus 11 others removed. He is having some fluid retention issues and the incision isn't healing as quickly as we had hoped because of the internal pressure from the fluid. He wears a sleeve on that leg and still has a drain. It's been 2 1/2 weeks so really not too concerning yet. 

        His surgeon said the only way to be sure all the micro cells have been removed is to take out the whole section in one large piece. It was a 4 hr procedure and he did great. He has told him he is NED because of this so we are thrilled. He starts the ipi March 10. Before you put off the surgery, check all the sources you can to make your decision. 

         

        jmm1052
        Participant

        Hi, 

        My husband was just diagnosed also- he had a swollen lymph node in his groin and finally was diagnosed with Melanoma- no evidence of where or when it began. He had the lymph node ( large one) plus 11 others removed. He is having some fluid retention issues and the incision isn't healing as quickly as we had hoped because of the internal pressure from the fluid. He wears a sleeve on that leg and still has a drain. It's been 2 1/2 weeks so really not too concerning yet. 

        His surgeon said the only way to be sure all the micro cells have been removed is to take out the whole section in one large piece. It was a 4 hr procedure and he did great. He has told him he is NED because of this so we are thrilled. He starts the ipi March 10. Before you put off the surgery, check all the sources you can to make your decision. 

         

      Renate
      Participant

      Sorry for all the typos!!!  I was impatient – any way to edit a post? lol

       

      jennunicorn
      Participant

      Hi Renate,

      Sorry to hear about your recent diagnosis. There is always a ton of questions in the beginning, wondering what the best path to take is. First, I am wondering why your doctor wants to go back in and take all of the lymph nodes? It is quite an invasive surgery, just getting the SLNB (sentinal lymph node biopsy) is invasive enough. I had my SLNB in November, had 4 lymph nodes removed and 3 had microscopic melanoma. No one ever suggested a full removal, nor would I have agreed to it. There is just no need in my opinion.

      As far as treatment, the options presented to me were watch and wait or Yervoy. Now that Yervoy (ipi) is approved for adjuvant treatment, Interferon is not even an option (as far as doctors in my area are concered anyway). Your oncologist will go over your options with you and lay out pros and cons. 

      Is this a life sentence? You can look at it that way, but it sounds really scary that way too. Yes, we will need to be aware of new moles or changing moles, get skin checks often, and we will need scans once in a while to make sure we stay NED (no evidence of disease). I know you haven't had your scans yet, so your final stage really hasn't been given to you, but hearing you only had 1 lymph node involvement at the microscopic level, it's a good possibility that nothing will show up in your scans, just like nothing showed up in mine. 

      Hope I helped a little bit. 

      All the best,
      Jenn

      jennunicorn
      Participant

      Hi Renate,

      Sorry to hear about your recent diagnosis. There is always a ton of questions in the beginning, wondering what the best path to take is. First, I am wondering why your doctor wants to go back in and take all of the lymph nodes? It is quite an invasive surgery, just getting the SLNB (sentinal lymph node biopsy) is invasive enough. I had my SLNB in November, had 4 lymph nodes removed and 3 had microscopic melanoma. No one ever suggested a full removal, nor would I have agreed to it. There is just no need in my opinion.

      As far as treatment, the options presented to me were watch and wait or Yervoy. Now that Yervoy (ipi) is approved for adjuvant treatment, Interferon is not even an option (as far as doctors in my area are concered anyway). Your oncologist will go over your options with you and lay out pros and cons. 

      Is this a life sentence? You can look at it that way, but it sounds really scary that way too. Yes, we will need to be aware of new moles or changing moles, get skin checks often, and we will need scans once in a while to make sure we stay NED (no evidence of disease). I know you haven't had your scans yet, so your final stage really hasn't been given to you, but hearing you only had 1 lymph node involvement at the microscopic level, it's a good possibility that nothing will show up in your scans, just like nothing showed up in mine. 

      Hope I helped a little bit. 

      All the best,
      Jenn

        Renate
        Participant

        Hi Jenn!  Thank you so much for the quick reply!  I did not even know it was an option not to remove the lympnh nodes!  This is such unchartered territory –  thi definitely helps!  Thank you!!!!

        Renate
        Participant

        Hi Jenn!  Thank you so much for the quick reply!  I did not even know it was an option not to remove the lympnh nodes!  This is such unchartered territory –  thi definitely helps!  Thank you!!!!

        jennunicorn
        Participant

        You're very welcome. Some surgeons are just all about cutting into people and don't think enough about the effects it has on our bodies afterward. I'd definitely find a Melanoma specialist in your area as they will have all of the newest information available for everything involving Melanoma. 

        jennunicorn
        Participant

        You're very welcome. Some surgeons are just all about cutting into people and don't think enough about the effects it has on our bodies afterward. I'd definitely find a Melanoma specialist in your area as they will have all of the newest information available for everything involving Melanoma. 

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        Renate
        Participant

        Wow – I had NO idea.  I am so glad I came on here!  I will definielty get a second opinion.  Thank you both!!!!!

        Renate
        Participant

        Wow – I had NO idea.  I am so glad I came on here!  I will definielty get a second opinion.  Thank you both!!!!!

        Renate
        Participant

        Wow – I had NO idea.  I am so glad I came on here!  I will definielty get a second opinion.  Thank you both!!!!!

        Marianne quinn
        Participant

        There is a lot of controversy regarding lymphendectomy, especially with a small positive node. A complete dissection of the groin is major surgery with long term side effects. Please get another opinion .

        jennunicorn
        Participant

        You're very welcome. Some surgeons are just all about cutting into people and don't think enough about the effects it has on our bodies afterward. I'd definitely find a Melanoma specialist in your area as they will have all of the newest information available for everything involving Melanoma. 

        Renate
        Participant

        Hi Jenn!  Thank you so much for the quick reply!  I did not even know it was an option not to remove the lympnh nodes!  This is such unchartered territory –  thi definitely helps!  Thank you!!!!

      jennunicorn
      Participant

      Hi Renate,

      Sorry to hear about your recent diagnosis. There is always a ton of questions in the beginning, wondering what the best path to take is. First, I am wondering why your doctor wants to go back in and take all of the lymph nodes? It is quite an invasive surgery, just getting the SLNB (sentinal lymph node biopsy) is invasive enough. I had my SLNB in November, had 4 lymph nodes removed and 3 had microscopic melanoma. No one ever suggested a full removal, nor would I have agreed to it. There is just no need in my opinion.

      As far as treatment, the options presented to me were watch and wait or Yervoy. Now that Yervoy (ipi) is approved for adjuvant treatment, Interferon is not even an option (as far as doctors in my area are concered anyway). Your oncologist will go over your options with you and lay out pros and cons. 

      Is this a life sentence? You can look at it that way, but it sounds really scary that way too. Yes, we will need to be aware of new moles or changing moles, get skin checks often, and we will need scans once in a while to make sure we stay NED (no evidence of disease). I know you haven't had your scans yet, so your final stage really hasn't been given to you, but hearing you only had 1 lymph node involvement at the microscopic level, it's a good possibility that nothing will show up in your scans, just like nothing showed up in mine. 

      Hope I helped a little bit. 

      All the best,
      Jenn

      BrianP
      Participant

      Renate,

      Did you have a SNB (sentinel node biopsy)?  I'm assuming you did since you said they found microscopic melanoma cells in one of your lymph nodes. 

      Traditionally doctors have recommended CLND (complete lymph node disection) if any melanoma was found during a SNB.  There seems to be a movement away from that.  Dr. Luke talks a little bit about that in the video I recommended in your other thread.  

      Here's another video on the subject.

      http://www.oncologypractice.com/specialty-focus/melanoma-skin-cancers/single-article-page/video-lymphadenectomies-dont-boost-survival-in-melanoma-with-sln-micrometastases/547bb9845da8b36d339c9f66303ad940.html

      Hang in there.  I know there's a lot of information.  It get's better.  Don't rush into anything.  There's an overwhelming urge to take action immediately but that really isn't necessary.  Do your research and make the decision you think is best for you.  If it takes a few weeks to do this that is perfectly fine.

      Brian

       

      BrianP
      Participant

      Renate,

      Did you have a SNB (sentinel node biopsy)?  I'm assuming you did since you said they found microscopic melanoma cells in one of your lymph nodes. 

      Traditionally doctors have recommended CLND (complete lymph node disection) if any melanoma was found during a SNB.  There seems to be a movement away from that.  Dr. Luke talks a little bit about that in the video I recommended in your other thread.  

      Here's another video on the subject.

      http://www.oncologypractice.com/specialty-focus/melanoma-skin-cancers/single-article-page/video-lymphadenectomies-dont-boost-survival-in-melanoma-with-sln-micrometastases/547bb9845da8b36d339c9f66303ad940.html

      Hang in there.  I know there's a lot of information.  It get's better.  Don't rush into anything.  There's an overwhelming urge to take action immediately but that really isn't necessary.  Do your research and make the decision you think is best for you.  If it takes a few weeks to do this that is perfectly fine.

      Brian

       

        Renate
        Participant

        Thank you Brian – that is great advice and I just sighed becuase that is exactly what i was doing – trying to get it out asap.  I am going to do the research.  i do feel so hopeful knowing that there are options!

        Thanks again

        Renate
        Participant

        Thank you Brian – that is great advice and I just sighed becuase that is exactly what i was doing – trying to get it out asap.  I am going to do the research.  i do feel so hopeful knowing that there are options!

        Thanks again

        Renate
        Participant

        Thank you Brian – that is great advice and I just sighed becuase that is exactly what i was doing – trying to get it out asap.  I am going to do the research.  i do feel so hopeful knowing that there are options!

        Thanks again

      BrianP
      Participant

      Renate,

      Did you have a SNB (sentinel node biopsy)?  I'm assuming you did since you said they found microscopic melanoma cells in one of your lymph nodes. 

      Traditionally doctors have recommended CLND (complete lymph node disection) if any melanoma was found during a SNB.  There seems to be a movement away from that.  Dr. Luke talks a little bit about that in the video I recommended in your other thread.  

      Here's another video on the subject.

      http://www.oncologypractice.com/specialty-focus/melanoma-skin-cancers/single-article-page/video-lymphadenectomies-dont-boost-survival-in-melanoma-with-sln-micrometastases/547bb9845da8b36d339c9f66303ad940.html

      Hang in there.  I know there's a lot of information.  It get's better.  Don't rush into anything.  There's an overwhelming urge to take action immediately but that really isn't necessary.  Do your research and make the decision you think is best for you.  If it takes a few weeks to do this that is perfectly fine.

      Brian

       

      gregor913
      Participant
      Sorry on your recent diagnosis. I’m also
      Stage 3 and the first few months are the
      Hardest. My melanoma was in my left armpit and I did the clnd. 11 taken out and all negative for cancer. I do know the hip region is very invasive surgery. Looking back would I change anything . No. Either way there is no wrong decision. The German study has been saying that ultrasound is the way to go.
      Just concentrate on the bright points when going through this. You had micro in your node so the melanoma was very minimal and hopefully all was taken out after the slnb. Greg
      gregor913
      Participant
      Sorry on your recent diagnosis. I’m also
      Stage 3 and the first few months are the
      Hardest. My melanoma was in my left armpit and I did the clnd. 11 taken out and all negative for cancer. I do know the hip region is very invasive surgery. Looking back would I change anything . No. Either way there is no wrong decision. The German study has been saying that ultrasound is the way to go.
      Just concentrate on the bright points when going through this. You had micro in your node so the melanoma was very minimal and hopefully all was taken out after the slnb. Greg
        Renate
        Participant

        Thank you!!!  I am so anxious to hear what the dr recommends Monday – Had Pet Scan and MRI yesterday.

        Renate
        Participant

        Thank you!!!  I am so anxious to hear what the dr recommends Monday – Had Pet Scan and MRI yesterday.

        Renate
        Participant

        Thank you!!!  I am so anxious to hear what the dr recommends Monday – Had Pet Scan and MRI yesterday.

      gregor913
      Participant
      Sorry on your recent diagnosis. I’m also
      Stage 3 and the first few months are the
      Hardest. My melanoma was in my left armpit and I did the clnd. 11 taken out and all negative for cancer. I do know the hip region is very invasive surgery. Looking back would I change anything . No. Either way there is no wrong decision. The German study has been saying that ultrasound is the way to go.
      Just concentrate on the bright points when going through this. You had micro in your node so the melanoma was very minimal and hopefully all was taken out after the slnb. Greg
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