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Lymph node question
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Lymph node question

› Forums › Cutaneous Melanoma Community › Lymph node question

  • Post
    • September 17, 2012 at 3:04 pm
    Mandi0280
    Participant

      Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything.

      Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything. 3 months ago we go in to get routine CAT scan results from dr and he says everythig looks good & that there are 2 lymph nodes in the neck showing up as "larger than normal" but they have been there ever since the very first PET scan that my husband had but do not "light up" on the scan as being cancer.  (we were never told until this last visit that those lymph nodes were "larger than normal") So he says that any person can have "larger than normal" lymph nodes that mean nothing …referring to anyone that has never even been diagnosed with melanoma. So he says that we will just keep a check on them to make sure they do not grow. I looked at the report and the nodes show "stable" .Has anyone ever herd of this before? Should I be asking for something more than just keeping a check on them? I like to think they are nothing since they don't light up on a PET but it makes me nervous. We go back for 3 months scans this Friday.

      Thanks,

      Mandi

    Viewing 8 reply threads
    • Replies
        • September 17, 2012 at 5:47 pm
        sharmon
        Participant

          Yes, Brent had a few lymph nodes that were put in the "to be watched" category and we not told by the first doctor, but later.  Keep your reports in an organized  file and each time you have a scan you keep track of the "to be watched" ones along with your doctor.  You didn't mention where you are being seen.  Is it a Melanoma Center of Excellence?

            • September 18, 2012 at 12:22 pm
            Mandi0280
            Participant

              He was being seen by a melanoma specialist at Vanderbilt in Nashville when he was first diagnosed and that Dr offered him the ipi/interferon trial. He did the trial but was given the option of doing it closer to our house (vanderbilt is about a 2 hour drive for us) so he done that trial at a cancer center that is affiliated with Vanderbilt about 30 miles from us…but the oncologists there are just general oncologists that do not specialize in malanoma. I know that is not always the best decision to see a general oncologist with melanoma  but my husband was bound and determined to not travel that far so that he could still work some..i guess in order to keep things as normal as possible for him. I couldn't change his mind. Going forward ( after taking only 2 rounds of ipi before being hospitalized and then 1 month of the high dose interferon) we are told that we just do scans every 3 months and see dermatologist. So as long as nothing shows up on scans i'm guessing this is the normal plan of action?  

              • September 18, 2012 at 12:22 pm
              Mandi0280
              Participant

                He was being seen by a melanoma specialist at Vanderbilt in Nashville when he was first diagnosed and that Dr offered him the ipi/interferon trial. He did the trial but was given the option of doing it closer to our house (vanderbilt is about a 2 hour drive for us) so he done that trial at a cancer center that is affiliated with Vanderbilt about 30 miles from us…but the oncologists there are just general oncologists that do not specialize in malanoma. I know that is not always the best decision to see a general oncologist with melanoma  but my husband was bound and determined to not travel that far so that he could still work some..i guess in order to keep things as normal as possible for him. I couldn't change his mind. Going forward ( after taking only 2 rounds of ipi before being hospitalized and then 1 month of the high dose interferon) we are told that we just do scans every 3 months and see dermatologist. So as long as nothing shows up on scans i'm guessing this is the normal plan of action?  

                • September 18, 2012 at 12:22 pm
                Mandi0280
                Participant

                  He was being seen by a melanoma specialist at Vanderbilt in Nashville when he was first diagnosed and that Dr offered him the ipi/interferon trial. He did the trial but was given the option of doing it closer to our house (vanderbilt is about a 2 hour drive for us) so he done that trial at a cancer center that is affiliated with Vanderbilt about 30 miles from us…but the oncologists there are just general oncologists that do not specialize in malanoma. I know that is not always the best decision to see a general oncologist with melanoma  but my husband was bound and determined to not travel that far so that he could still work some..i guess in order to keep things as normal as possible for him. I couldn't change his mind. Going forward ( after taking only 2 rounds of ipi before being hospitalized and then 1 month of the high dose interferon) we are told that we just do scans every 3 months and see dermatologist. So as long as nothing shows up on scans i'm guessing this is the normal plan of action?  

                • September 17, 2012 at 5:47 pm
                sharmon
                Participant

                  Yes, Brent had a few lymph nodes that were put in the "to be watched" category and we not told by the first doctor, but later.  Keep your reports in an organized  file and each time you have a scan you keep track of the "to be watched" ones along with your doctor.  You didn't mention where you are being seen.  Is it a Melanoma Center of Excellence?

                  • September 17, 2012 at 5:47 pm
                  sharmon
                  Participant

                    Yes, Brent had a few lymph nodes that were put in the "to be watched" category and we not told by the first doctor, but later.  Keep your reports in an organized  file and each time you have a scan you keep track of the "to be watched" ones along with your doctor.  You didn't mention where you are being seen.  Is it a Melanoma Center of Excellence?

                    • September 19, 2012 at 5:11 am
                    Dynasysman
                    Participant

                      Hi Mandi.  I am Stage 3a diagnosed in November, 2010, NED today.  I do not believe I have ever had a scan with no enlared lymph nodes…just part of life.  My most recent scan was Friday and revealed a coujple of small nodules in my left lung and one enlarged lymph nodes…but the nodules have been there forever and, as I say, I do not ever recall a scan without at least one enlarged lymph node.  Vandy is a good place, so I am sure you husband is getting excellent attention.

                        • September 19, 2012 at 12:42 pm
                        Mandi0280
                        Participant

                          Thanks for the reply. Makes me feel better that someone else has went through the enlarged lymph nodes… that according to the Dr probably do not have anything to do with the melanoma. I can tell just the fact that they are enlarged gives my husband some anxiety because I will see him rubbing his neck sometimes to make sure he can't feel them. So the nodules in your lung they do not think is melanoma? Also, after one year NED did they continue to do scans every 3 months or did you go to every 6 months?

                          • September 19, 2012 at 12:42 pm
                          Mandi0280
                          Participant

                            Thanks for the reply. Makes me feel better that someone else has went through the enlarged lymph nodes… that according to the Dr probably do not have anything to do with the melanoma. I can tell just the fact that they are enlarged gives my husband some anxiety because I will see him rubbing his neck sometimes to make sure he can't feel them. So the nodules in your lung they do not think is melanoma? Also, after one year NED did they continue to do scans every 3 months or did you go to every 6 months?

                            • September 19, 2012 at 12:42 pm
                            Mandi0280
                            Participant

                              Thanks for the reply. Makes me feel better that someone else has went through the enlarged lymph nodes… that according to the Dr probably do not have anything to do with the melanoma. I can tell just the fact that they are enlarged gives my husband some anxiety because I will see him rubbing his neck sometimes to make sure he can't feel them. So the nodules in your lung they do not think is melanoma? Also, after one year NED did they continue to do scans every 3 months or did you go to every 6 months?

                            • September 19, 2012 at 5:11 am
                            Dynasysman
                            Participant

                              Hi Mandi.  I am Stage 3a diagnosed in November, 2010, NED today.  I do not believe I have ever had a scan with no enlared lymph nodes…just part of life.  My most recent scan was Friday and revealed a coujple of small nodules in my left lung and one enlarged lymph nodes…but the nodules have been there forever and, as I say, I do not ever recall a scan without at least one enlarged lymph node.  Vandy is a good place, so I am sure you husband is getting excellent attention.

                              • September 19, 2012 at 5:11 am
                              Dynasysman
                              Participant

                                Hi Mandi.  I am Stage 3a diagnosed in November, 2010, NED today.  I do not believe I have ever had a scan with no enlared lymph nodes…just part of life.  My most recent scan was Friday and revealed a coujple of small nodules in my left lung and one enlarged lymph nodes…but the nodules have been there forever and, as I say, I do not ever recall a scan without at least one enlarged lymph node.  Vandy is a good place, so I am sure you husband is getting excellent attention.

                                • September 19, 2012 at 4:59 pm
                                awillett1991
                                Participant
                                  To me this sounds like no big deal ESP if they aren’t growing. I have stuff that lights up on PET then on CT they will say its nothing. Have gone through this multiple times, including this week.

                                  As long as they are watching it, sometimes that’s all you can do.

                                  “stable” to me is a beautiful word on a report.

                                    • September 19, 2012 at 5:49 pm
                                    Mandi0280
                                    Participant

                                      Thanks for the reply. We also have went through that before. Something lit up on his liver before and they said it was only a group of blood vessels. But you're right i will take a "stable" lymph node.

                                      • September 19, 2012 at 5:49 pm
                                      Mandi0280
                                      Participant

                                        Thanks for the reply. We also have went through that before. Something lit up on his liver before and they said it was only a group of blood vessels. But you're right i will take a "stable" lymph node.

                                        • September 19, 2012 at 5:49 pm
                                        Mandi0280
                                        Participant

                                          Thanks for the reply. We also have went through that before. Something lit up on his liver before and they said it was only a group of blood vessels. But you're right i will take a "stable" lymph node.

                                        • September 19, 2012 at 4:59 pm
                                        awillett1991
                                        Participant
                                          To me this sounds like no big deal ESP if they aren’t growing. I have stuff that lights up on PET then on CT they will say its nothing. Have gone through this multiple times, including this week.

                                          As long as they are watching it, sometimes that’s all you can do.

                                          “stable” to me is a beautiful word on a report.

                                          • September 19, 2012 at 4:59 pm
                                          awillett1991
                                          Participant
                                            To me this sounds like no big deal ESP if they aren’t growing. I have stuff that lights up on PET then on CT they will say its nothing. Have gone through this multiple times, including this week.

                                            As long as they are watching it, sometimes that’s all you can do.

                                            “stable” to me is a beautiful word on a report.

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