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GreenWally

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      GreenWally
      Participant
        I’m not familiar with the type of melanoma you have described. I was diagnosed with superficial spreading melanoma .9mm mitotic rate 1, Clark level 4.

        I had a WLE and a SNLB which came back as one positive mode with a few micrometets. I had a CLND of my left auxiliary nodes. I chose no further treatment. I have been NED for 1 1/2 years.

        GreenWally
        Participant
          Thanks for the responses. I haven’t read a lot of people who have thin melanomas (less than 1mm) with 1 positive node of micromets. Anyone else in a similar situation? Anyforegoing adjuvant therapy? The oncologist I spoke with said interfuron may give me a 10 percent chance of not reoccuring. I was also told Ippi has been shown to cause bowel perforation, so that certainly didn’t sell that. The doctors feel my prognosis is more like a 3A with a 20-25 percent chance or reoccurrence the next 5 years.
          GreenWally
          Participant
            Thanks for the responses. I haven’t read a lot of people who have thin melanomas (less than 1mm) with 1 positive node of micromets. Anyone else in a similar situation? Anyforegoing adjuvant therapy? The oncologist I spoke with said interfuron may give me a 10 percent chance of not reoccuring. I was also told Ippi has been shown to cause bowel perforation, so that certainly didn’t sell that. The doctors feel my prognosis is more like a 3A with a 20-25 percent chance or reoccurrence the next 5 years.
            GreenWally
            Participant
              Thanks for the responses. I haven’t read a lot of people who have thin melanomas (less than 1mm) with 1 positive node of micromets. Anyone else in a similar situation? Anyforegoing adjuvant therapy? The oncologist I spoke with said interfuron may give me a 10 percent chance of not reoccuring. I was also told Ippi has been shown to cause bowel perforation, so that certainly didn’t sell that. The doctors feel my prognosis is more like a 3A with a 20-25 percent chance or reoccurrence the next 5 years.
              GreenWally
              Participant

                Although Melanoma is very scary and unpredictable at times.  I think based on your pathology, the prognosis is excellent.  Good luck in your melanoma journey.

                GreenWally
                Participant
                  My advice to you is to get the SNL done at the time of the WLE. I was a .9 bres low with mitotic rate of 1 and a Clark level 4. The chances of a positive lymph node were around 8 percent. I was 42 years old at the time. I had a positive node. Unfortunately someone falls in that low percentage category. I was that unfortunate person. Hopefully, you won’t be. I was diagnosed Stage 3B. I’m one year NED.
                  GreenWally
                  Participant

                    I was in a similar situation.  The melanoma clinic I was at offered CLND as it was the "standard of care". I also was one positive node with a few cells.  My dermatolgist recommended against it and cited the DECOG study which showed no advantage of the CLND.  It was a difficult decision.  My issue with DECOG was the study is scientifically underpowered and only shows a 3 year survival rate.  There is another study on going, but the results will not be in for a few more years.  I had to make a decision with what I know now.  Ultimately, I decided to do an auxillary lymph node disection.  The data just wasn't there in the long term to forego the surgery.  I was concerned that I could have left a microscopic amount of cells in the lymph node basin that years from now would grow and cause more problems.  All my nodes came back clear, but you should know that's for obvious signs of cancer.  They do no disect the nodes as finely as the sentinel nodes. You may have removed microscopic cells.  No one will know.  I have minor side effects with small amount of occasional nerve pain, totally bearable.  I have full mobility and live a normal life.  I am coming up on 1 year NED.  Make the decision you feel most confortable with and never look back.  The only right decision is the one you can be at peace with.  Good luck.

                    GreenWally
                    Participant
                      I was in a very similar situation as your fiance. My primary was .9mm with 1 mitosis and only a few micromets in one node. Technically, it’s stage 3b although with the new staging in January 2018, it’s Stage 3A.

                      As far as CLND, there is no right answer. There is data suggesting, the prognosis is the same without the surgery. The chances of additional nodes having metastisis is very low, but keep in mind those nodes are not scrutinized as finely as the sentinel nodes. So, the question is, did you remove micrometastis in other nodes? You will never know.

                      It is also fact that younger people tend to have a higher rate of positive sentinel nodes. Why is this? A theory is that younger people have a more active immune system. So, would those micromets have developed into further metastis? No one knows. They could be marked for destruction and never have caused any problems.

                      So, your fiance needs to make a decision and feel comfortable with it. The study on CLND won’t have results until 2019, so that doesn’t help now. I elected to do the surgery in my auxiliary. I experience some nerve pain, but no lymphedema. I have full mobility and I have very little negative effects from it.

                      As far as therapy, that is again another personal choice. Some people choose to, and others do not. The new immunotherapies do not go without side effects. Some people have none at all. Would your fiance ever metastesise without therapy? There is probably a 75 percent chance they would not. Keep in mind tumor thickness and tumor burden in the sentinel lymph nodes are strong predictors of progression to stage 4. Your fiance’s numbers are very low. As you said a “soft stage 3”. I was told “barely stage 3”. Can thinner melanomas metastise? Sure can. Most importantly make a decision you feel comfortable with and stick with it. In the end, there may be no right answer.

                      As for me, I’ve elected to live my life. I’m a healthy 42 year old. I’m just keeping an eye on things. Im only 8 months into this. I wish I had years of wisdom to pass on. I wish your fiance the best.

                      GreenWally
                      Participant
                        I was in a very similar situation as your fiance. My primary was .9mm with 1 mitosis and only a few micromets in one node. Technically, it’s stage 3b although with the new staging in January 2018, it’s Stage 3A.

                        As far as CLND, there is no right answer. There is data suggesting, the prognosis is the same without the surgery. The chances of additional nodes having metastisis is very low, but keep in mind those nodes are not scrutinized as finely as the sentinel nodes. So, the question is, did you remove micrometastis in other nodes? You will never know.

                        It is also fact that younger people tend to have a higher rate of positive sentinel nodes. Why is this? A theory is that younger people have a more active immune system. So, would those micromets have developed into further metastis? No one knows. They could be marked for destruction and never have caused any problems.

                        So, your fiance needs to make a decision and feel comfortable with it. The study on CLND won’t have results until 2019, so that doesn’t help now. I elected to do the surgery in my auxiliary. I experience some nerve pain, but no lymphedema. I have full mobility and I have very little negative effects from it.

                        As far as therapy, that is again another personal choice. Some people choose to, and others do not. The new immunotherapies do not go without side effects. Some people have none at all. Would your fiance ever metastesise without therapy? There is probably a 75 percent chance they would not. Keep in mind tumor thickness and tumor burden in the sentinel lymph nodes are strong predictors of progression to stage 4. Your fiance’s numbers are very low. As you said a “soft stage 3”. I was told “barely stage 3”. Can thinner melanomas metastise? Sure can. Most importantly make a decision you feel comfortable with and stick with it. In the end, there may be no right answer.

                        As for me, I’ve elected to live my life. I’m a healthy 42 year old. I’m just keeping an eye on things. Im only 8 months into this. I wish I had years of wisdom to pass on. I wish your fiance the best.

                        GreenWally
                        Participant
                          I was in a very similar situation as your fiance. My primary was .9mm with 1 mitosis and only a few micromets in one node. Technically, it’s stage 3b although with the new staging in January 2018, it’s Stage 3A.

                          As far as CLND, there is no right answer. There is data suggesting, the prognosis is the same without the surgery. The chances of additional nodes having metastisis is very low, but keep in mind those nodes are not scrutinized as finely as the sentinel nodes. So, the question is, did you remove micrometastis in other nodes? You will never know.

                          It is also fact that younger people tend to have a higher rate of positive sentinel nodes. Why is this? A theory is that younger people have a more active immune system. So, would those micromets have developed into further metastis? No one knows. They could be marked for destruction and never have caused any problems.

                          So, your fiance needs to make a decision and feel comfortable with it. The study on CLND won’t have results until 2019, so that doesn’t help now. I elected to do the surgery in my auxiliary. I experience some nerve pain, but no lymphedema. I have full mobility and I have very little negative effects from it.

                          As far as therapy, that is again another personal choice. Some people choose to, and others do not. The new immunotherapies do not go without side effects. Some people have none at all. Would your fiance ever metastesise without therapy? There is probably a 75 percent chance they would not. Keep in mind tumor thickness and tumor burden in the sentinel lymph nodes are strong predictors of progression to stage 4. Your fiance’s numbers are very low. As you said a “soft stage 3”. I was told “barely stage 3”. Can thinner melanomas metastise? Sure can. Most importantly make a decision you feel comfortable with and stick with it. In the end, there may be no right answer.

                          As for me, I’ve elected to live my life. I’m a healthy 42 year old. I’m just keeping an eye on things. Im only 8 months into this. I wish I had years of wisdom to pass on. I wish your fiance the best.

                          GreenWally
                          Participant
                            Mass General Ken Tannabe. Surgical Oncologist and Harvard Medical School. Amazing surgeon.
                            GreenWally
                            Participant
                              Mass General Ken Tannabe. Surgical Oncologist and Harvard Medical School. Amazing surgeon.
                              GreenWally
                              Participant
                                Mass General Ken Tannabe. Surgical Oncologist and Harvard Medical School. Amazing surgeon.
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