Rate of Recurrence?
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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 4:06 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 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 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 1:11 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 1:11 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 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 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.

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