So confused after my visit with my SCT doctor at The James Cancer Center

Was diganoised with aggressive B cell Non-Hodgkin's Lymphoma w/bone marrow involvement. After my chemo treatments I had 2 pet scans and both came back clean. Oncologist (whom I do trust)wanted me to get a consultation with the SCT dr. She told me that she had reviewed all my paperwork including lab results. She said that I did not need the transplant and thought that I was cured. Not in remission, but cured. I think that I would like another bone marrow biospy for my own peace of mind. I do see my oncologist on the 24th.
Would apppreciate any feedback.

Thanks,
Carol

Comments

  • jimwins
    jimwins Member Posts: 2,107
    Hi Carol
    Hi Carol,

    I'm glad you had good results! Now, it's my understanding that
    in "cancer speak", cure is not really used until you are remission
    for 5 years. I may be wrong on this but that is what I understood.

    I would discuss it with your oncologist and particularly about the
    bone marrow biopsy. He/she can either agree or ease your mind about it.

    I hope you find peace of mind with all of this.

    Jim
  • vinny59
    vinny59 Member Posts: 1,036 Member
    precaution
    Hey Carol, I had the same thing happen to me with my B cell with bone marrow involvement. My oncologist sent me to University of Penn to speak with the SCT doctor. I believe its protocol to do this, since this would be the next preferred style of treatment if we would fall into relapse. Vinny
  • carolp99
    carolp99 Member Posts: 70
    vinny59 said:

    precaution
    Hey Carol, I had the same thing happen to me with my B cell with bone marrow involvement. My oncologist sent me to University of Penn to speak with the SCT doctor. I believe its protocol to do this, since this would be the next preferred style of treatment if we would fall into relapse. Vinny

    Precaution
    I'm doing everything my oncologist tells me to do, and I do understand seeing the SCT doctor. I did research her on the web(don't we all)and she is well respected in the medical field. Still don't understand why she said cure instead of remission. Just don't want to get my hopes up.
    Thanks for you response,
    Carol
  • carolp99
    carolp99 Member Posts: 70
    jimwins said:

    Hi Carol
    Hi Carol,

    I'm glad you had good results! Now, it's my understanding that
    in "cancer speak", cure is not really used until you are remission
    for 5 years. I may be wrong on this but that is what I understood.

    I would discuss it with your oncologist and particularly about the
    bone marrow biopsy. He/she can either agree or ease your mind about it.

    I hope you find peace of mind with all of this.

    Jim

    Hi Carol
    Jim, that is exactly what my oncologist told me about the 5 year remission period. I'll meet with him later this month and see what his opinion is.
    Thank you for responding,
    Carol
  • cure
    Carol,

    I too thought that oncologists used the word "cure" very carefully. It seems strange, but so exciting if true! Although you are the only person I have ever heard say they would like another bone marrow biopsy, I can certainly see why you would want to have some concrete answers.

    I hope you can find some peace of mind! Good luck!

    -Nathan
  • carolp99
    carolp99 Member Posts: 70
    jimwins said:

    Hi Carol
    Hi Carol,

    I'm glad you had good results! Now, it's my understanding that
    in "cancer speak", cure is not really used until you are remission
    for 5 years. I may be wrong on this but that is what I understood.

    I would discuss it with your oncologist and particularly about the
    bone marrow biopsy. He/she can either agree or ease your mind about it.

    I hope you find peace of mind with all of this.

    Jim

    Hi Carol
    Thanks Jim. When I first saw my oncolgist he also mentioned the 5 year cure date. That's why I don't understand why the SCT Dr. said I was cured. I guess I'll wait to see what my oncologist says. With cancer your life is in such turmoil anyway, and I just want some clear answers.

    Carol
  • carolp99
    carolp99 Member Posts: 70
    vinny59 said:

    precaution
    Hey Carol, I had the same thing happen to me with my B cell with bone marrow involvement. My oncologist sent me to University of Penn to speak with the SCT doctor. I believe its protocol to do this, since this would be the next preferred style of treatment if we would fall into relapse. Vinny

    Precaution
    Vinny, are you in remission now? I hope so! Hate the thought of going through chemo again, but it's better for me than a transplant.

    Carol
  • carolp99
    carolp99 Member Posts: 70
    unknown said:

    cure
    Carol,

    I too thought that oncologists used the word "cure" very carefully. It seems strange, but so exciting if true! Although you are the only person I have ever heard say they would like another bone marrow biopsy, I can certainly see why you would want to have some concrete answers.

    I hope you can find some peace of mind! Good luck!

    -Nathan

    Cure
    I certainly don't want a bone marrow biopsy, as I've had 2 already and they were so painful! But I'm so confused and I want know exactly where I am in my battle with cancer. My husband and I left the hospital so excited until I got home and thought about all I had read on this forum and other websites. Such a rollercoaster!
    Carol
  • vinny59
    vinny59 Member Posts: 1,036 Member
    carolp99 said:

    Precaution
    Vinny, are you in remission now? I hope so! Hate the thought of going through chemo again, but it's better for me than a transplant.

    Carol

    yes
    Hi Carol, yes I'm in remission now, going on two years! I still have a uptake of 2.5 on my left hip that they say is treatment related. I will take it.. It's like you said you have to listen to your oncologist he knows best...... Vinny
  • carolp99
    carolp99 Member Posts: 70
    vinny59 said:

    yes
    Hi Carol, yes I'm in remission now, going on two years! I still have a uptake of 2.5 on my left hip that they say is treatment related. I will take it.. It's like you said you have to listen to your oncologist he knows best...... Vinny

    Yes
    So happy for you Vinny! Praying it stays in remission.
    Carol