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

carolp99
Posts: 70
Joined: Aug 2012

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

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

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

carolp99
Posts: 70
Joined: Aug 2012

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

carolp99
Posts: 70
Joined: Aug 2012

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

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

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
Posts: 70
Joined: Aug 2012

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
Posts: 70
Joined: Aug 2012

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

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

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
Posts: 70
Joined: Aug 2012

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

hiccup (not verified)

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
Posts: 70
Joined: Aug 2012

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

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