MRF-Logo2019-Horizontal-RGB
Rate of Recurrence?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Rate of Recurrence?

› Forums › General Melanoma Community › Rate of Recurrence?

  • Post
    • October 26, 2014 at 4:03 pm
    5dives
    Participant

      Hi all,

      I am 45 years old, and I have recently moved from stage 1B to 3A because of a second opinion at Memorial Sloan-Ketterting that helped clarify some very iffy pathology results. The MSK doc called me T1bN1aM0, but did not want to say "3A". He preferred to say T1bN1a. To be honest, I don't understand his reluctance to say 3A, but I want you to have the full picture. My one lymph node had micro, not macro metastasis. The MSK doc said if it was a macro amount he would recommend CLND, but for my situation and my age, he thought it would be overkill. MSK does not do interferon. 

      Overall, I felt very reassured by my visit to MSK and am oddly comforted by being told I'm T1bN1a instead of "just" stage 1b, because the MSK doc recommended 6 month scans. He also recommended being careful with brain scans as melanoma rarely goes to the brain without going somewhere else first. He said my oncologist at Loyola in Chicago could choose what scans he would like to do. 

    Viewing 2 reply threads
    • Replies
        • October 26, 2014 at 4:06 pm
        5dives
        Participant

          Sorry! I clicked "post" before I was done! 

           

          My question: The doc at MSK told me to avoid 5 year prognosis statistics because he feels there have been so many positive changes in melanoma treatment and the 5 year stats are no longer really accurate. I agree, and I am trying not to think of those stats at all. 

          Does anybody here have a good source for recurrence rates? In other words, how likely is a stage 3A melanoma it recur as compared to a 1B melanoma? Or stats about how long a melanoma is likely to stay away before it recurs? 

          Thanks for any information you may have.

          Best, 

          Elaine

          • October 26, 2014 at 4:06 pm
          5dives
          Participant

            Sorry! I clicked "post" before I was done! 

             

            My question: The doc at MSK told me to avoid 5 year prognosis statistics because he feels there have been so many positive changes in melanoma treatment and the 5 year stats are no longer really accurate. I agree, and I am trying not to think of those stats at all. 

            Does anybody here have a good source for recurrence rates? In other words, how likely is a stage 3A melanoma it recur as compared to a 1B melanoma? Or stats about how long a melanoma is likely to stay away before it recurs? 

            Thanks for any information you may have.

            Best, 

            Elaine

              • October 26, 2014 at 4:19 pm
              Squash
              Participant

                Stage 3 recurrence is around 2 years on average I think but there are so many variables that I dont know how valuable that information is in your case especially as you are barely stage 3.

                I would just take this as a wake up call and start looking at ways to improve your diet , reduce stress look at supplements etc and hopefully you wont have to deal anymore with it.

                 

                • October 26, 2014 at 4:19 pm
                Squash
                Participant

                  Stage 3 recurrence is around 2 years on average I think but there are so many variables that I dont know how valuable that information is in your case especially as you are barely stage 3.

                  I would just take this as a wake up call and start looking at ways to improve your diet , reduce stress look at supplements etc and hopefully you wont have to deal anymore with it.

                   

                  • October 26, 2014 at 4:19 pm
                  Squash
                  Participant

                    Stage 3 recurrence is around 2 years on average I think but there are so many variables that I dont know how valuable that information is in your case especially as you are barely stage 3.

                    I would just take this as a wake up call and start looking at ways to improve your diet , reduce stress look at supplements etc and hopefully you wont have to deal anymore with it.

                     

                    • October 26, 2014 at 11:56 pm
                    Happy_girl
                    Participant

                      Which doc did you talk to at mskcc?  I spoke with dr coit- he is also the one who did my surgery.  

                      • October 26, 2014 at 11:56 pm
                      Happy_girl
                      Participant

                        Which doc did you talk to at mskcc?  I spoke with dr coit- he is also the one who did my surgery.  

                        • October 26, 2014 at 11:56 pm
                        Happy_girl
                        Participant

                          Which doc did you talk to at mskcc?  I spoke with dr coit- he is also the one who did my surgery.  

                          • October 27, 2014 at 12:13 am
                          5dives
                          Participant

                            Happy_girl, 

                            I saw Dr. Postow. I really liked his manner and approach to my situation. I also appreciate that he said my case was being handled very well by my Chicago doc. He explained that I can consider myself his patient and can always schedule an appointment at MSKCC, but should feel comfortable in Chicago. He said he sees plenty of mismanaged cases (what a shame!) but mine isn't one of them. That was reassuring. 

                            It's good to hear you're in good hands, right? 

                            Best, 

                            Elaine

                            • October 27, 2014 at 12:13 am
                            5dives
                            Participant

                              Happy_girl, 

                              I saw Dr. Postow. I really liked his manner and approach to my situation. I also appreciate that he said my case was being handled very well by my Chicago doc. He explained that I can consider myself his patient and can always schedule an appointment at MSKCC, but should feel comfortable in Chicago. He said he sees plenty of mismanaged cases (what a shame!) but mine isn't one of them. That was reassuring. 

                              It's good to hear you're in good hands, right? 

                              Best, 

                              Elaine

                              • October 27, 2014 at 1:27 am
                              Emcjones1
                              Participant

                                Elaine

                                You and I are in the same boat, I am getting the same advice, different doctor and hospital, although they are still calling mine 3a. I am having the genetics diagnosed, to understand what profile is if it should come back. The recurrence rate for folks under 50 is not very well studied to date, although there are both prospective and retrospective studies underway. I am getting a body scan to establish a baseline and then go from there. 

                                I wish you the best

                                Genie

                                • October 27, 2014 at 1:27 am
                                Emcjones1
                                Participant

                                  Elaine

                                  You and I are in the same boat, I am getting the same advice, different doctor and hospital, although they are still calling mine 3a. I am having the genetics diagnosed, to understand what profile is if it should come back. The recurrence rate for folks under 50 is not very well studied to date, although there are both prospective and retrospective studies underway. I am getting a body scan to establish a baseline and then go from there. 

                                  I wish you the best

                                  Genie

                                  • October 27, 2014 at 3:36 am
                                  5dives
                                  Participant

                                    Genie, 

                                    i had a full body PET / CT in preparation for the MSKCC appointment and it came back clean. That helped my anxiety quite a bit. I hope you get the same results. 

                                    I see my surgical oncologist on November 6th, and I'm going to ask him about the nodes one more time since I haven't seen him since before New York. Then. I'm probably just going to have to deal with some uncertainty.

                                    I'm going to keep an eye on you, Genie. Good luck in your next steps.

                                    Best, 

                                    Elaine

                                    • October 27, 2014 at 3:36 am
                                    5dives
                                    Participant

                                      Genie, 

                                      i had a full body PET / CT in preparation for the MSKCC appointment and it came back clean. That helped my anxiety quite a bit. I hope you get the same results. 

                                      I see my surgical oncologist on November 6th, and I'm going to ask him about the nodes one more time since I haven't seen him since before New York. Then. I'm probably just going to have to deal with some uncertainty.

                                      I'm going to keep an eye on you, Genie. Good luck in your next steps.

                                      Best, 

                                      Elaine

                                      • October 27, 2014 at 3:36 am
                                      5dives
                                      Participant

                                        Genie, 

                                        i had a full body PET / CT in preparation for the MSKCC appointment and it came back clean. That helped my anxiety quite a bit. I hope you get the same results. 

                                        I see my surgical oncologist on November 6th, and I'm going to ask him about the nodes one more time since I haven't seen him since before New York. Then. I'm probably just going to have to deal with some uncertainty.

                                        I'm going to keep an eye on you, Genie. Good luck in your next steps.

                                        Best, 

                                        Elaine

                                        • October 27, 2014 at 1:27 am
                                        Emcjones1
                                        Participant

                                          Elaine

                                          You and I are in the same boat, I am getting the same advice, different doctor and hospital, although they are still calling mine 3a. I am having the genetics diagnosed, to understand what profile is if it should come back. The recurrence rate for folks under 50 is not very well studied to date, although there are both prospective and retrospective studies underway. I am getting a body scan to establish a baseline and then go from there. 

                                          I wish you the best

                                          Genie

                                          • October 27, 2014 at 1:11 pm
                                          sharon0803
                                          Participant

                                            Happy Girl,

                                             

                                            Hi, I too am near Chicago and stage 3A.  I am/was a late stage 3A.  Some said I was 3B.  I will be three years clean come 11/14/14.  Are you seeing Dr. Clark?  I had a GREAT surgeon over at Loyala.  

                                            • October 27, 2014 at 1:11 pm
                                            sharon0803
                                            Participant

                                              Happy Girl,

                                               

                                              Hi, I too am near Chicago and stage 3A.  I am/was a late stage 3A.  Some said I was 3B.  I will be three years clean come 11/14/14.  Are you seeing Dr. Clark?  I had a GREAT surgeon over at Loyala.  

                                              • October 27, 2014 at 1:27 pm
                                              5dives
                                              Participant

                                                Hi Sharon, 

                                                I'm at Loyola with Dr. Clark, Dr. Godellas (surgeon), Dr. Cimino (plastic surgeon), and Dr. Winterfield (derm). I feel like it's a great team. 

                                                Thank you for the encouraging news about your three years clean! Right now I'm dealing with fear. Trying not to, but am struggling. 

                                                Thanks,

                                                Elaine

                                                • October 27, 2014 at 1:27 pm
                                                5dives
                                                Participant

                                                  Hi Sharon, 

                                                  I'm at Loyola with Dr. Clark, Dr. Godellas (surgeon), Dr. Cimino (plastic surgeon), and Dr. Winterfield (derm). I feel like it's a great team. 

                                                  Thank you for the encouraging news about your three years clean! Right now I'm dealing with fear. Trying not to, but am struggling. 

                                                  Thanks,

                                                  Elaine

                                                  • October 27, 2014 at 5:10 pm
                                                  sharon0803
                                                  Participant

                                                    I had Dr. Godellas, he is the BEST!  The best of luck to you!

                                                    • October 27, 2014 at 5:10 pm
                                                    sharon0803
                                                    Participant

                                                      I had Dr. Godellas, he is the BEST!  The best of luck to you!

                                                      • October 28, 2014 at 10:54 am
                                                      Happy_girl
                                                      Participant

                                                        I'm actually in Ohio.  I go to university hospital- and will go to mskcc once a year to keep them informed.  IT will be 8 months since my original results soon.  Seems so long ago- yet not really.  I understand the fear.  Holding my daughter when she was 6 weeks old-I remember thinking I will never see her go to kindergarten.  Now she is rolling all over the place:).  

                                                        I appreciate you all sharing your thoughts and feelings!  Glad to have people who "get it."  My family and friends are amazing- but it doesnt replace how important it is to talk with people in similar situations.

                                                        • October 28, 2014 at 10:54 am
                                                        Happy_girl
                                                        Participant

                                                          I'm actually in Ohio.  I go to university hospital- and will go to mskcc once a year to keep them informed.  IT will be 8 months since my original results soon.  Seems so long ago- yet not really.  I understand the fear.  Holding my daughter when she was 6 weeks old-I remember thinking I will never see her go to kindergarten.  Now she is rolling all over the place:).  

                                                          I appreciate you all sharing your thoughts and feelings!  Glad to have people who "get it."  My family and friends are amazing- but it doesnt replace how important it is to talk with people in similar situations.

                                                          • October 28, 2014 at 10:54 am
                                                          Happy_girl
                                                          Participant

                                                            I'm actually in Ohio.  I go to university hospital- and will go to mskcc once a year to keep them informed.  IT will be 8 months since my original results soon.  Seems so long ago- yet not really.  I understand the fear.  Holding my daughter when she was 6 weeks old-I remember thinking I will never see her go to kindergarten.  Now she is rolling all over the place:).  

                                                            I appreciate you all sharing your thoughts and feelings!  Glad to have people who "get it."  My family and friends are amazing- but it doesnt replace how important it is to talk with people in similar situations.

                                                            • October 27, 2014 at 5:10 pm
                                                            sharon0803
                                                            Participant

                                                              I had Dr. Godellas, he is the BEST!  The best of luck to you!

                                                              • October 27, 2014 at 1:27 pm
                                                              5dives
                                                              Participant

                                                                Hi Sharon, 

                                                                I'm at Loyola with Dr. Clark, Dr. Godellas (surgeon), Dr. Cimino (plastic surgeon), and Dr. Winterfield (derm). I feel like it's a great team. 

                                                                Thank you for the encouraging news about your three years clean! Right now I'm dealing with fear. Trying not to, but am struggling. 

                                                                Thanks,

                                                                Elaine

                                                                • October 27, 2014 at 1:11 pm
                                                                sharon0803
                                                                Participant

                                                                  Happy Girl,

                                                                   

                                                                  Hi, I too am near Chicago and stage 3A.  I am/was a late stage 3A.  Some said I was 3B.  I will be three years clean come 11/14/14.  Are you seeing Dr. Clark?  I had a GREAT surgeon over at Loyala.  

                                                                  • October 27, 2014 at 12:13 am
                                                                  5dives
                                                                  Participant

                                                                    Happy_girl, 

                                                                    I saw Dr. Postow. I really liked his manner and approach to my situation. I also appreciate that he said my case was being handled very well by my Chicago doc. He explained that I can consider myself his patient and can always schedule an appointment at MSKCC, but should feel comfortable in Chicago. He said he sees plenty of mismanaged cases (what a shame!) but mine isn't one of them. That was reassuring. 

                                                                    It's good to hear you're in good hands, right? 

                                                                    Best, 

                                                                    Elaine

                                                                  • October 26, 2014 at 4:06 pm
                                                                  5dives
                                                                  Participant

                                                                    Sorry! I clicked "post" before I was done! 

                                                                     

                                                                    My question: The doc at MSK told me to avoid 5 year prognosis statistics because he feels there have been so many positive changes in melanoma treatment and the 5 year stats are no longer really accurate. I agree, and I am trying not to think of those stats at all. 

                                                                    Does anybody here have a good source for recurrence rates? In other words, how likely is a stage 3A melanoma it recur as compared to a 1B melanoma? Or stats about how long a melanoma is likely to stay away before it recurs? 

                                                                    Thanks for any information you may have.

                                                                    Best, 

                                                                    Elaine

                                                                Viewing 2 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                Popular Topics