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New to this and wondering what’s next

› Forums › Cutaneous Melanoma Community › New to this and wondering what’s next

  • Post
    • October 14, 2011 at 7:01 pm
    Jeannie C
    Participant

      I was diagnosed July this year with stage 2 melanoma. on the side of my nose. I just had a third surgery Oct 12th, undoing  the forhead flap graph. Now i have a few cosmetic procedures to follow, but I'm concerned about the melanoma recurring. I was treated at Sloan Kettering in NYC, and I'm wondering why no one there mentioned cat scans as part of future screening. I was led to believe skin examination every 3 months would be sufficient. Sentinel lymph node biopsy came back negative, so I figured I was in the clear. ????

      I was diagnosed July this year with stage 2 melanoma. on the side of my nose. I just had a third surgery Oct 12th, undoing  the forhead flap graph. Now i have a few cosmetic procedures to follow, but I'm concerned about the melanoma recurring. I was treated at Sloan Kettering in NYC, and I'm wondering why no one there mentioned cat scans as part of future screening. I was led to believe skin examination every 3 months would be sufficient. Sentinel lymph node biopsy came back negative, so I figured I was in the clear. ???? I always thought melanoma was an "external" cancer, not something that could affect the brain, lungs etc??? Do I need to seek out another doctor?

    Viewing 8 reply threads
    • Replies
        • October 14, 2011 at 8:37 pm
        jackiewin
        Participant

          Scans are not usually done for Stage 2 melanoma,  just the skin checks.  You went to one of the top cancer hospitals, but if it will make you feel better, you can go for another opinion.

          Good luck.

          Jackie W

           

          • October 14, 2011 at 8:37 pm
          jackiewin
          Participant

            Scans are not usually done for Stage 2 melanoma,  just the skin checks.  You went to one of the top cancer hospitals, but if it will make you feel better, you can go for another opinion.

            Good luck.

            Jackie W

             

            • October 14, 2011 at 8:37 pm
            jackiewin
            Participant

              Scans are not usually done for Stage 2 melanoma,  just the skin checks.  You went to one of the top cancer hospitals, but if it will make you feel better, you can go for another opinion.

              Good luck.

              Jackie W

               

                • October 14, 2011 at 8:53 pm
                Jeannie C
                Participant

                  Thank You Jackie! I feel much better already. It's just so much to take in. When I was first diagnosed, it was by a nurse practioner in a dermatolagists office. Reading that it was a very aggressive cancer I immediately put myself in the hands of Sloan Kettering. Now that the major surgeries are over, I'm catching my breathe and looking into what lies ahead. I want to be pro-active, but not anal about it either. So is it safe to say that with stage ll, melanoma is not likely to show up other than as a mole. Do I have to worry about it showing up internally?

                  • October 14, 2011 at 8:53 pm
                  Jeannie C
                  Participant

                    Thank You Jackie! I feel much better already. It's just so much to take in. When I was first diagnosed, it was by a nurse practioner in a dermatolagists office. Reading that it was a very aggressive cancer I immediately put myself in the hands of Sloan Kettering. Now that the major surgeries are over, I'm catching my breathe and looking into what lies ahead. I want to be pro-active, but not anal about it either. So is it safe to say that with stage ll, melanoma is not likely to show up other than as a mole. Do I have to worry about it showing up internally?

                    • October 14, 2011 at 8:53 pm
                    Jeannie C
                    Participant

                      Thank You Jackie! I feel much better already. It's just so much to take in. When I was first diagnosed, it was by a nurse practioner in a dermatolagists office. Reading that it was a very aggressive cancer I immediately put myself in the hands of Sloan Kettering. Now that the major surgeries are over, I'm catching my breathe and looking into what lies ahead. I want to be pro-active, but not anal about it either. So is it safe to say that with stage ll, melanoma is not likely to show up other than as a mole. Do I have to worry about it showing up internally?

                    • October 14, 2011 at 10:28 pm
                    Jamietk
                    Participant

                      Hi Jeannie,

                      Unfortunately, melanoma is very much something that can spread to internal organs and your brain. I am borderline stage IB/IIA, depending on which path you go by. I was only scheduled for chest xray and bloodwork until I had some symptoms, discovered lots of spots in many organs, and had to follow them. They turned out to be benign. Had I not had symptoms, I don't believe I would have had all these scans at my stage. I go to MD Anderson so I trust they know what they're doing. Most hospitals don't do regular scans at stage II. As Jackie said, you are at a top center at Sloan so you should feel good about it. Stage II is a weird place to be. You're not considered early, but there are no treatments or much to do for prevention. I guess its a good problem to have. Best of luck to you. I am going next week for my official 6 year NED checkup for Stage IIA. I am back to chest xray and bloodwork only, once a year.

                        • October 14, 2011 at 10:41 pm
                        Jeannie C
                        Participant

                          Hi Jamie,

                          Thanks for replying. I am starting to feel a bit less apprehensive. It is what it is, and all the worrying in the world won't change a thing, in fact,  worrying is stressful and stress is never good for the body.  I'll keep up with the 3 month body scans for the time being, and, aside from avoiding the sun (sob!) I'm not going to let it get me down.

                           

                          Thanks!

                           

                          ~Peace~  Jeannie C

                          • October 14, 2011 at 10:41 pm
                          Jeannie C
                          Participant

                            Hi Jamie,

                            Thanks for replying. I am starting to feel a bit less apprehensive. It is what it is, and all the worrying in the world won't change a thing, in fact,  worrying is stressful and stress is never good for the body.  I'll keep up with the 3 month body scans for the time being, and, aside from avoiding the sun (sob!) I'm not going to let it get me down.

                             

                            Thanks!

                             

                            ~Peace~  Jeannie C

                            • October 14, 2011 at 10:41 pm
                            Jeannie C
                            Participant

                              Hi Jamie,

                              Thanks for replying. I am starting to feel a bit less apprehensive. It is what it is, and all the worrying in the world won't change a thing, in fact,  worrying is stressful and stress is never good for the body.  I'll keep up with the 3 month body scans for the time being, and, aside from avoiding the sun (sob!) I'm not going to let it get me down.

                               

                              Thanks!

                               

                              ~Peace~  Jeannie C

                              • October 16, 2011 at 12:05 am
                              LynnLuc
                              Participant

                                Yes I agree- it addresses only the outside-…I had regular skin checks..but I had from around  my initial removal of my freckle on my neck..around 92 or so,  then it reappeared around 96-97 and had it removed in 2000 with a half dozen lymph nodes ( all clear) until I was found stage 4 with a 6.8 cent melanoma at its widest base..kissing my aorta in 2009. There was no other "outside" clues.Amazing how one "spot" can change your life….whatever stage a person is…its never going to 100% relief….it comes back when you least expect it . When it was removed I never gave it much thought..I also thought…it was only a spot…they should be a better way then skin exams but thats all they offered me too…

                                • October 17, 2011 at 1:10 pm
                                Jeannie C
                                Participant

                                  Thanks for sharing Lynn. I am going to switch dermatogogists. My current doctor seems to specialize in making money on botox, chemical peels and the like. As soon as the disgnosis came back melanoma, they called to tell me they don't handle that type of skin cancer, and, thankfully, referred me to Sloan Kettering.  they coudn't answer any of my initial questions , yet they've called me several times since my first surgury to set up future appointments. I am going to find a doctor affiliated with Sloan Kettering in New Jersey, which is an easier trip than trying to get into NYC on any given day.

                                   

                                  I wish yoy well!

                                  ~Peace~

                                  Jeannie

                                  • October 17, 2011 at 1:10 pm
                                  Jeannie C
                                  Participant

                                    Thanks for sharing Lynn. I am going to switch dermatogogists. My current doctor seems to specialize in making money on botox, chemical peels and the like. As soon as the disgnosis came back melanoma, they called to tell me they don't handle that type of skin cancer, and, thankfully, referred me to Sloan Kettering.  they coudn't answer any of my initial questions , yet they've called me several times since my first surgury to set up future appointments. I am going to find a doctor affiliated with Sloan Kettering in New Jersey, which is an easier trip than trying to get into NYC on any given day.

                                     

                                    I wish yoy well!

                                    ~Peace~

                                    Jeannie

                                    • October 17, 2011 at 1:10 pm
                                    Jeannie C
                                    Participant

                                      Thanks for sharing Lynn. I am going to switch dermatogogists. My current doctor seems to specialize in making money on botox, chemical peels and the like. As soon as the disgnosis came back melanoma, they called to tell me they don't handle that type of skin cancer, and, thankfully, referred me to Sloan Kettering.  they coudn't answer any of my initial questions , yet they've called me several times since my first surgury to set up future appointments. I am going to find a doctor affiliated with Sloan Kettering in New Jersey, which is an easier trip than trying to get into NYC on any given day.

                                       

                                      I wish yoy well!

                                      ~Peace~

                                      Jeannie

                                      • October 16, 2011 at 12:05 am
                                      LynnLuc
                                      Participant

                                        Yes I agree- it addresses only the outside-…I had regular skin checks..but I had from around  my initial removal of my freckle on my neck..around 92 or so,  then it reappeared around 96-97 and had it removed in 2000 with a half dozen lymph nodes ( all clear) until I was found stage 4 with a 6.8 cent melanoma at its widest base..kissing my aorta in 2009. There was no other "outside" clues.Amazing how one "spot" can change your life….whatever stage a person is…its never going to 100% relief….it comes back when you least expect it . When it was removed I never gave it much thought..I also thought…it was only a spot…they should be a better way then skin exams but thats all they offered me too…

                                        • October 16, 2011 at 12:05 am
                                        LynnLuc
                                        Participant

                                          Yes I agree- it addresses only the outside-…I had regular skin checks..but I had from around  my initial removal of my freckle on my neck..around 92 or so,  then it reappeared around 96-97 and had it removed in 2000 with a half dozen lymph nodes ( all clear) until I was found stage 4 with a 6.8 cent melanoma at its widest base..kissing my aorta in 2009. There was no other "outside" clues.Amazing how one "spot" can change your life….whatever stage a person is…its never going to 100% relief….it comes back when you least expect it . When it was removed I never gave it much thought..I also thought…it was only a spot…they should be a better way then skin exams but thats all they offered me too…

                                        • October 14, 2011 at 10:28 pm
                                        Jamietk
                                        Participant

                                          Hi Jeannie,

                                          Unfortunately, melanoma is very much something that can spread to internal organs and your brain. I am borderline stage IB/IIA, depending on which path you go by. I was only scheduled for chest xray and bloodwork until I had some symptoms, discovered lots of spots in many organs, and had to follow them. They turned out to be benign. Had I not had symptoms, I don't believe I would have had all these scans at my stage. I go to MD Anderson so I trust they know what they're doing. Most hospitals don't do regular scans at stage II. As Jackie said, you are at a top center at Sloan so you should feel good about it. Stage II is a weird place to be. You're not considered early, but there are no treatments or much to do for prevention. I guess its a good problem to have. Best of luck to you. I am going next week for my official 6 year NED checkup for Stage IIA. I am back to chest xray and bloodwork only, once a year.

                                          • October 14, 2011 at 10:28 pm
                                          Jamietk
                                          Participant

                                            Hi Jeannie,

                                            Unfortunately, melanoma is very much something that can spread to internal organs and your brain. I am borderline stage IB/IIA, depending on which path you go by. I was only scheduled for chest xray and bloodwork until I had some symptoms, discovered lots of spots in many organs, and had to follow them. They turned out to be benign. Had I not had symptoms, I don't believe I would have had all these scans at my stage. I go to MD Anderson so I trust they know what they're doing. Most hospitals don't do regular scans at stage II. As Jackie said, you are at a top center at Sloan so you should feel good about it. Stage II is a weird place to be. You're not considered early, but there are no treatments or much to do for prevention. I guess its a good problem to have. Best of luck to you. I am going next week for my official 6 year NED checkup for Stage IIA. I am back to chest xray and bloodwork only, once a year.

                                            • October 15, 2011 at 12:58 am
                                            Janner
                                            Participant

                                              Scans are controversial for every stage, but not typically for stage I or II unless there are symptoms.  Question:  Do you know the depth of your lesion?  If you had ulceration?  Mitosis?  Just making sure you are stage II and not Clark's Level II.  Those two designations are often confused in the newly diagnosed.  One denotes depth of the lesion and the other is related to prognosis.  However, since you had the sentinel node biopsy, I am assuming you are really stage II.  Even with a negative SNB, melanoma can return.  There are no guarantees, although having a negative SNB is a good sign.  MSKCC certainly treats a lot of melanoma patients, but if you are unhappy with your doctor's communication, please find another specialist.  People who have stage I and II are kind of in limbo.  They don't really get scans, just skin checks.  There aren't really any treatment options for them either.  So frequent monitoring is just about the norm.

                                              Sorry you had to join us here.

                                              Best wishes,

                                              Janner

                                              • October 15, 2011 at 12:58 am
                                              Janner
                                              Participant

                                                Scans are controversial for every stage, but not typically for stage I or II unless there are symptoms.  Question:  Do you know the depth of your lesion?  If you had ulceration?  Mitosis?  Just making sure you are stage II and not Clark's Level II.  Those two designations are often confused in the newly diagnosed.  One denotes depth of the lesion and the other is related to prognosis.  However, since you had the sentinel node biopsy, I am assuming you are really stage II.  Even with a negative SNB, melanoma can return.  There are no guarantees, although having a negative SNB is a good sign.  MSKCC certainly treats a lot of melanoma patients, but if you are unhappy with your doctor's communication, please find another specialist.  People who have stage I and II are kind of in limbo.  They don't really get scans, just skin checks.  There aren't really any treatment options for them either.  So frequent monitoring is just about the norm.

                                                Sorry you had to join us here.

                                                Best wishes,

                                                Janner

                                                • October 15, 2011 at 12:58 am
                                                Janner
                                                Participant

                                                  Scans are controversial for every stage, but not typically for stage I or II unless there are symptoms.  Question:  Do you know the depth of your lesion?  If you had ulceration?  Mitosis?  Just making sure you are stage II and not Clark's Level II.  Those two designations are often confused in the newly diagnosed.  One denotes depth of the lesion and the other is related to prognosis.  However, since you had the sentinel node biopsy, I am assuming you are really stage II.  Even with a negative SNB, melanoma can return.  There are no guarantees, although having a negative SNB is a good sign.  MSKCC certainly treats a lot of melanoma patients, but if you are unhappy with your doctor's communication, please find another specialist.  People who have stage I and II are kind of in limbo.  They don't really get scans, just skin checks.  There aren't really any treatment options for them either.  So frequent monitoring is just about the norm.

                                                  Sorry you had to join us here.

                                                  Best wishes,

                                                  Janner

                                                    • October 15, 2011 at 12:40 pm
                                                    MichaelFL
                                                    Participant

                                                      Profile says 1.2 mm. Betting stage II.

                                                      • October 15, 2011 at 12:40 pm
                                                      MichaelFL
                                                      Participant

                                                        Profile says 1.2 mm. Betting stage II.

                                                        • October 15, 2011 at 12:40 pm
                                                        MichaelFL
                                                        Participant

                                                          Profile says 1.2 mm. Betting stage II.

                                                          • October 15, 2011 at 1:27 pm
                                                          Jeannie C
                                                          Participant

                                                            Thanks Janner. I haven't seen the dermatologist at MSKCC since late July. I'm due for a check up and I'm now armed with a long list of questions, thanks to everyone's help on this board. Once I have a better understanding of the original diagnosis and the prognosis, I plan on doing my own research as to the best way to deal with this. I know the first step is a much needed change in diet. I am a lover of all foods that aren't neccessarily the best for one's health.!

                                                            Thank you again

                                                             

                                                            ~Peace~ Jeannie C

                                                            • October 15, 2011 at 1:27 pm
                                                            Jeannie C
                                                            Participant

                                                              Thanks Janner. I haven't seen the dermatologist at MSKCC since late July. I'm due for a check up and I'm now armed with a long list of questions, thanks to everyone's help on this board. Once I have a better understanding of the original diagnosis and the prognosis, I plan on doing my own research as to the best way to deal with this. I know the first step is a much needed change in diet. I am a lover of all foods that aren't neccessarily the best for one's health.!

                                                              Thank you again

                                                               

                                                              ~Peace~ Jeannie C

                                                              • October 15, 2011 at 1:27 pm
                                                              Jeannie C
                                                              Participant

                                                                Thanks Janner. I haven't seen the dermatologist at MSKCC since late July. I'm due for a check up and I'm now armed with a long list of questions, thanks to everyone's help on this board. Once I have a better understanding of the original diagnosis and the prognosis, I plan on doing my own research as to the best way to deal with this. I know the first step is a much needed change in diet. I am a lover of all foods that aren't neccessarily the best for one's health.!

                                                                Thank you again

                                                                 

                                                                ~Peace~ Jeannie C

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