lvitelli

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      lvitelli
      Participant

        Are you still out there Mary? Just wondering if you had a chance to read my response to you.

        lvitelli
        Participant

          Are you still out there Mary? Just wondering if you had a chance to read my response to you.

          lvitelli
          Participant

            thanks for the response Mary. I'm having a hard time finding anyone in my same situation believe it or not.  When did this all occur for you? I just had the ultra. When the doctor removed the remainder of the cancer in my arm, she did the SNB. That is when they found the microscopic cluster in one node. Its funny how I comfort myself by saying it was a microscopic cluster and i"m a stage 3A. Makes me feel better. Anyway, I have the remaining nodes still in me. I just had an ultra and it was clear. My doctor said 7 even 5 years ago the option would have been surgery but its trending away from that. Did you get a second opinion? Are you suffering any negative effects from the full node removal?

            lvitelli
            Participant

              thanks for the response Mary. I'm having a hard time finding anyone in my same situation believe it or not.  When did this all occur for you? I just had the ultra. When the doctor removed the remainder of the cancer in my arm, she did the SNB. That is when they found the microscopic cluster in one node. Its funny how I comfort myself by saying it was a microscopic cluster and i"m a stage 3A. Makes me feel better. Anyway, I have the remaining nodes still in me. I just had an ultra and it was clear. My doctor said 7 even 5 years ago the option would have been surgery but its trending away from that. Did you get a second opinion? Are you suffering any negative effects from the full node removal?

              lvitelli
              Participant

                So you had all of your lymph nodes removed? I"m not sure I follow. I had my sentinel node and two others biospied. The microscopic cluster was found in the sentinel node. My doctor doesn't recommend removing the remaining nodes. She feels its not any advantage to me. I am not saying the lymph nodes are any sort of a barrier. But to me, the way you described them just made me think of them as a barrier. You said something to the effect that you would rather use your nodes as a line of defense. I too never knew the depth and true nature of our lymphatic system.

                I"m normally a very nervouse person. I have a young child and want to see her grow up. But for some reason, I'm not rushing to have the surgery.  I would just loose it if it turns out that there was something in my nodes and I didn't do anything about it.

                lvitelli
                Participant

                  So you had all of your lymph nodes removed? I"m not sure I follow. I had my sentinel node and two others biospied. The microscopic cluster was found in the sentinel node. My doctor doesn't recommend removing the remaining nodes. She feels its not any advantage to me. I am not saying the lymph nodes are any sort of a barrier. But to me, the way you described them just made me think of them as a barrier. You said something to the effect that you would rather use your nodes as a line of defense. I too never knew the depth and true nature of our lymphatic system.

                  I"m normally a very nervouse person. I have a young child and want to see her grow up. But for some reason, I'm not rushing to have the surgery.  I would just loose it if it turns out that there was something in my nodes and I didn't do anything about it.

                  lvitelli
                  Participant

                    I really never thought of it that way. I had no idea that it would be better or even possible to the cancer to go to the lymph nodes before going to another part of my body. I agree that finding something in my lungs, liver, etc is far worse for me and what I have to worry about more now than finding in my nodes. I didnt know nodes are a barrier??

                    lvitelli
                    Participant

                      I really never thought of it that way. I had no idea that it would be better or even possible to the cancer to go to the lymph nodes before going to another part of my body. I agree that finding something in my lungs, liver, etc is far worse for me and what I have to worry about more now than finding in my nodes. I didnt know nodes are a barrier??

                      lvitelli
                      Participant

                        thanks for your response Nicki. It sounds as if you are doing well? I was not told that stage 3A is advanced. I was actually told that being a 3A is closer to Stage 2 than stage 3B. Whatever that all may mean.  There is no proof that having the full lymph node removal will improve my survival rate or stop the spread of any future cancer. Plus, there is only a 5% chance that any of the remaining nodes have the cancer. But you do bring up a good point that living with the side or negative effects or far better than a possible alternative. Hence my dilema.

                        lvitelli
                        Participant

                          thanks for your response Nicki. It sounds as if you are doing well? I was not told that stage 3A is advanced. I was actually told that being a 3A is closer to Stage 2 than stage 3B. Whatever that all may mean.  There is no proof that having the full lymph node removal will improve my survival rate or stop the spread of any future cancer. Plus, there is only a 5% chance that any of the remaining nodes have the cancer. But you do bring up a good point that living with the side or negative effects or far better than a possible alternative. Hence my dilema.

                          lvitelli
                          Participant

                            I will have to ask about the clinical trial. Thanks for letting me know. I have an appointment with my immunologist next month. Your comment that most people don't have the melanoma is exactly why my doctor has not recommended it. I know that I have to be comfortable. Thatis why I am having such a dilema. At first, I was all about the surgery. How could I not do everyting possible to ensure I can live as long as possible?? I asked myself over and over. But weeks passed and I had a PET which was negative, I had an ultra sound which was negative. And then, at my last appointment, I thought my doctor and I would discuss surgery, but she didn't even bring it up. All she said was "seey ou in four months". She again reiterated her beliefs for treatment. You are also correct that is has not been proven that LND improves overall survival. This would not prevent future spread of the disease. So, do I take the risks for uncertain or unnecessary rewards???

                            Thanks for your thoughts

                            lvitelli
                            Participant

                              I will have to ask about the clinical trial. Thanks for letting me know. I have an appointment with my immunologist next month. Your comment that most people don't have the melanoma is exactly why my doctor has not recommended it. I know that I have to be comfortable. Thatis why I am having such a dilema. At first, I was all about the surgery. How could I not do everyting possible to ensure I can live as long as possible?? I asked myself over and over. But weeks passed and I had a PET which was negative, I had an ultra sound which was negative. And then, at my last appointment, I thought my doctor and I would discuss surgery, but she didn't even bring it up. All she said was "seey ou in four months". She again reiterated her beliefs for treatment. You are also correct that is has not been proven that LND improves overall survival. This would not prevent future spread of the disease. So, do I take the risks for uncertain or unnecessary rewards???

                              Thanks for your thoughts

                              lvitelli
                              Participant

                                I was told that total removal of the lymph nodes could result is severe swelling of my left arm permently along with drainage issues. The dilema is that we don't know if there is any cancer in the remaining nodes. According to my doctor, there is only a 5% chance.

                                lvitelli
                                Participant

                                  I was told that total removal of the lymph nodes could result is severe swelling of my left arm permently along with drainage issues. The dilema is that we don't know if there is any cancer in the remaining nodes. According to my doctor, there is only a 5% chance.

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