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“Iffy” pathology
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“Iffy” pathology

› Forums › General Melanoma Community › “Iffy” pathology

  • Post
    • September 5, 2014 at 9:52 pm
    5dives
    Participant

      Hello, 

      I'm almost two months post-op for my wle / slnb and I still don't really know if my node is positive. I was told that it was, then that it wasn't, then that it "might be" trace positive. I'm incredibly baffled by the fact that this well-regarded Chicago hospital can't seem to tell me if I have a positive node or not.

      Met the medical oncologist this week, who offered me 4 options, based on my "possibly positive" node: 

      1. Full groin dissection (he recommended against it) 

      2. A year of interferon (he said he could "go either way"with that, but that he wasn't going to push me in that direction)

      3. Five years low-dose interferon (never heard of it myself, I guess I need to do some reading)

      4. Do nothing

      I said I was inclined to do nothing because my node was possibly negative or barely positive. He asked me if I had thought about a second opinion. He said that if it were him or his wife in my situation, he'd go to Boston or New York. 

      I'm heading to Memorial Sloan-Kettering (after a PET scan) for a treatment consultation. I guess I'm mostly just venting here. I just can't believe that I can't get a clear answer on my stage. 

      I respect that the doctor admits my lab results are "iffy", but I am officially going crazy with worry. 

      If anybody has a thought about what I should do, I'm listening. 

       

       

    Viewing 8 reply threads
    • Replies
        • September 5, 2014 at 10:31 pm
        washoegal
        Participant

          I don't blame you for venting.  Good for you for getting a second opinion.  I don't see how it can be "iffy".  That would drive me crazy too!  I'd see if I could get the slide from the offending Node to take with me to S-K.  That's what I did when I went to the Clinic I did.

          Good Luck!

          Mary

          • September 5, 2014 at 10:31 pm
          washoegal
          Participant

            I don't blame you for venting.  Good for you for getting a second opinion.  I don't see how it can be "iffy".  That would drive me crazy too!  I'd see if I could get the slide from the offending Node to take with me to S-K.  That's what I did when I went to the Clinic I did.

            Good Luck!

            Mary

            • September 5, 2014 at 10:31 pm
            washoegal
            Participant

              I don't blame you for venting.  Good for you for getting a second opinion.  I don't see how it can be "iffy".  That would drive me crazy too!  I'd see if I could get the slide from the offending Node to take with me to S-K.  That's what I did when I went to the Clinic I did.

              Good Luck!

              Mary

              • September 5, 2014 at 11:29 pm
              Bubbles
              Participant

                Goodness, Elaine!  I know all this has been more than frustrating.  With unclear node results, it certainly causes even more difficulty in making additional decisions in an already murky situation.

                Here is a post/article that addresses the basic question you are asking:

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

                However, the lack of information/consensus on the positivity – or not – of your node makes things even harder to parse.  I certainly think getting a second opinion is a good idea.  Balch, from Dallas, co-author of study noted, is particularly known for his expertise in evaluating sentinel nodes and might be a great person to get to review your slides.

                As I've told folks here before…with even clearer results…whether you choose to do the CLD is very personal and whatever you choose has to be what you feel is right for YOU!!!

                I wish you my best.  Celeste

                  • September 6, 2014 at 12:06 am
                  Happy_girl
                  Participant

                    I understand how frustrating this is.  I had a similar situation.  When my node was first checked- it was said to be clear.  Through a series of events, we got a second opinion that said there was a miscroscopic cell in there.  From that point we did go to Sloan Kettering for a "third" opinion.  They did confirm that is was a melanoma cell in the lph node.  I did decide to do the clnd- I'm too much of a worrier not to.  I was definitely not pushed to do it- told they were ok with me going either way with the dissection.  I did just hear back yesterday that all other nodes were clear… Yippee!  I hope your situation is the opposite of mine- that yours is truly negative- but I do understand the frustration, fear, worry, etc.  

                     

                    * side note- did I see you are a teacher? I am too…. 3rd graders.  Have a 7 month old too. smiley

                    • September 6, 2014 at 3:12 am
                    momof4boys
                    Participant
                      this is my opinion I’ll just tell you I was diagnosed stage 3b. I have a lot of cancer in my family so I figured it was worth it for me to do the clnd. however I do think it matters where the melanoma is. mine was on my calf. my surgeon’s nurse told me how big of a surgery this was going to be but no one ever told me that it would completely change my life.when I say that I mean getting lymphedema. I did get lymphedema and it is kind of hard to manage at least for me. but at the same time I kept reading what stage four people are going through and I didn’t want to get there. so I chose the CL Andy and I probably wouldn’t have changed my mind if I had to do it all over again. this disease is wicked in for myself I felt I had to do everything necessary. I also have 4 kids and really for the most part have managed to get along just fine. things have definitely changed in my life but at least I’m here. research lymphedema before you make any decisions
                      • September 6, 2014 at 3:12 am
                      momof4boys
                      Participant
                        this is my opinion I’ll just tell you I was diagnosed stage 3b. I have a lot of cancer in my family so I figured it was worth it for me to do the clnd. however I do think it matters where the melanoma is. mine was on my calf. my surgeon’s nurse told me how big of a surgery this was going to be but no one ever told me that it would completely change my life.when I say that I mean getting lymphedema. I did get lymphedema and it is kind of hard to manage at least for me. but at the same time I kept reading what stage four people are going through and I didn’t want to get there. so I chose the CL Andy and I probably wouldn’t have changed my mind if I had to do it all over again. this disease is wicked in for myself I felt I had to do everything necessary. I also have 4 kids and really for the most part have managed to get along just fine. things have definitely changed in my life but at least I’m here. research lymphedema before you make any decisions
                        • September 6, 2014 at 3:12 am
                        momof4boys
                        Participant
                          this is my opinion I’ll just tell you I was diagnosed stage 3b. I have a lot of cancer in my family so I figured it was worth it for me to do the clnd. however I do think it matters where the melanoma is. mine was on my calf. my surgeon’s nurse told me how big of a surgery this was going to be but no one ever told me that it would completely change my life.when I say that I mean getting lymphedema. I did get lymphedema and it is kind of hard to manage at least for me. but at the same time I kept reading what stage four people are going through and I didn’t want to get there. so I chose the CL Andy and I probably wouldn’t have changed my mind if I had to do it all over again. this disease is wicked in for myself I felt I had to do everything necessary. I also have 4 kids and really for the most part have managed to get along just fine. things have definitely changed in my life but at least I’m here. research lymphedema before you make any decisions
                          • September 6, 2014 at 3:13 am
                          momof4boys
                          Participant
                            sorry for the typos I’m on my phone
                            • September 6, 2014 at 3:13 am
                            momof4boys
                            Participant
                              sorry for the typos I’m on my phone
                              • September 6, 2014 at 3:13 am
                              momof4boys
                              Participant
                                sorry for the typos I’m on my phone
                                • September 6, 2014 at 12:06 am
                                Happy_girl
                                Participant

                                  I understand how frustrating this is.  I had a similar situation.  When my node was first checked- it was said to be clear.  Through a series of events, we got a second opinion that said there was a miscroscopic cell in there.  From that point we did go to Sloan Kettering for a "third" opinion.  They did confirm that is was a melanoma cell in the lph node.  I did decide to do the clnd- I'm too much of a worrier not to.  I was definitely not pushed to do it- told they were ok with me going either way with the dissection.  I did just hear back yesterday that all other nodes were clear… Yippee!  I hope your situation is the opposite of mine- that yours is truly negative- but I do understand the frustration, fear, worry, etc.  

                                   

                                  * side note- did I see you are a teacher? I am too…. 3rd graders.  Have a 7 month old too. smiley

                                  • September 6, 2014 at 12:06 am
                                  Happy_girl
                                  Participant

                                    I understand how frustrating this is.  I had a similar situation.  When my node was first checked- it was said to be clear.  Through a series of events, we got a second opinion that said there was a miscroscopic cell in there.  From that point we did go to Sloan Kettering for a "third" opinion.  They did confirm that is was a melanoma cell in the lph node.  I did decide to do the clnd- I'm too much of a worrier not to.  I was definitely not pushed to do it- told they were ok with me going either way with the dissection.  I did just hear back yesterday that all other nodes were clear… Yippee!  I hope your situation is the opposite of mine- that yours is truly negative- but I do understand the frustration, fear, worry, etc.  

                                     

                                    * side note- did I see you are a teacher? I am too…. 3rd graders.  Have a 7 month old too. smiley

                                  • September 5, 2014 at 11:29 pm
                                  Bubbles
                                  Participant

                                    Goodness, Elaine!  I know all this has been more than frustrating.  With unclear node results, it certainly causes even more difficulty in making additional decisions in an already murky situation.

                                    Here is a post/article that addresses the basic question you are asking:

                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

                                    However, the lack of information/consensus on the positivity – or not – of your node makes things even harder to parse.  I certainly think getting a second opinion is a good idea.  Balch, from Dallas, co-author of study noted, is particularly known for his expertise in evaluating sentinel nodes and might be a great person to get to review your slides.

                                    As I've told folks here before…with even clearer results…whether you choose to do the CLD is very personal and whatever you choose has to be what you feel is right for YOU!!!

                                    I wish you my best.  Celeste

                                    • September 5, 2014 at 11:29 pm
                                    Bubbles
                                    Participant

                                      Goodness, Elaine!  I know all this has been more than frustrating.  With unclear node results, it certainly causes even more difficulty in making additional decisions in an already murky situation.

                                      Here is a post/article that addresses the basic question you are asking:

                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

                                      However, the lack of information/consensus on the positivity – or not – of your node makes things even harder to parse.  I certainly think getting a second opinion is a good idea.  Balch, from Dallas, co-author of study noted, is particularly known for his expertise in evaluating sentinel nodes and might be a great person to get to review your slides.

                                      As I've told folks here before…with even clearer results…whether you choose to do the CLD is very personal and whatever you choose has to be what you feel is right for YOU!!!

                                      I wish you my best.  Celeste

                                      • September 7, 2014 at 3:12 pm
                                      5dives
                                      Participant

                                        Thank you so much for your responses. I always find the responses on this board to be helpful and calming. Bubbles, thanks for the link! Happy_Girl, I teach high school French and I have three boys at home, ages 11, 13, and 17. 

                                        I'm obviously very concerned about lymphedema, but I'm unbelievably stressed about the idea that the cancer could be in my node basin. If I had clear results, I'd feel better, obviously, but the uncertainty of the whole thing is maddening. 

                                        I am glad I'll have a PET scan, which I think is warranted at this point, since I would have had it if I were officially stage 3. That might help with my nerves. I have decided that I will respect whatever the doctor at MSK (Dr. Michael Postow) tells me, otherwise there's really no point in going. 

                                        I am glad that my doctor here in Chicago was willing to admit that the results are "iffy". He encouraged me to dig deeper, which I appreciate. 

                                        Thanks for your input, 

                                        Elaine

                                        • September 7, 2014 at 3:12 pm
                                        5dives
                                        Participant

                                          Thank you so much for your responses. I always find the responses on this board to be helpful and calming. Bubbles, thanks for the link! Happy_Girl, I teach high school French and I have three boys at home, ages 11, 13, and 17. 

                                          I'm obviously very concerned about lymphedema, but I'm unbelievably stressed about the idea that the cancer could be in my node basin. If I had clear results, I'd feel better, obviously, but the uncertainty of the whole thing is maddening. 

                                          I am glad I'll have a PET scan, which I think is warranted at this point, since I would have had it if I were officially stage 3. That might help with my nerves. I have decided that I will respect whatever the doctor at MSK (Dr. Michael Postow) tells me, otherwise there's really no point in going. 

                                          I am glad that my doctor here in Chicago was willing to admit that the results are "iffy". He encouraged me to dig deeper, which I appreciate. 

                                          Thanks for your input, 

                                          Elaine

                                          • September 7, 2014 at 3:12 pm
                                          5dives
                                          Participant

                                            Thank you so much for your responses. I always find the responses on this board to be helpful and calming. Bubbles, thanks for the link! Happy_Girl, I teach high school French and I have three boys at home, ages 11, 13, and 17. 

                                            I'm obviously very concerned about lymphedema, but I'm unbelievably stressed about the idea that the cancer could be in my node basin. If I had clear results, I'd feel better, obviously, but the uncertainty of the whole thing is maddening. 

                                            I am glad I'll have a PET scan, which I think is warranted at this point, since I would have had it if I were officially stage 3. That might help with my nerves. I have decided that I will respect whatever the doctor at MSK (Dr. Michael Postow) tells me, otherwise there's really no point in going. 

                                            I am glad that my doctor here in Chicago was willing to admit that the results are "iffy". He encouraged me to dig deeper, which I appreciate. 

                                            Thanks for your input, 

                                            Elaine

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