Oh, Oh. New Question

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  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    cathyp said:

    Oh, I see!  You were asking

    Oh, I see!  You were asking about PET scans!  Well, hopefully we'll all be symptom free and never have either one again!

    Yes !!!!!

    Yes...That is the bottom line for us all. I just feel so bad for the ones that have this to look forward to in the future. We weren't the first and we darn sure will not be the last. The good thing is they are coming up with advances everyday it seems. John

  • COBRA666 said:

    THANK YOU !!!!

      Hey Members,

       I went to the Onc.Dr. today for a follow up appt. I go every 3 months as a routine. They did blood work and other lab work. I then saw the Dr. and I asked him this question. He said," If you have any active cells in your body anywhere the isotope and sugar mixture that you drink about an hour beforehand will make any cancerous cell in your body light up like a Xmas tree." I then said that kind of puts us a step ahead since early detection is the key. He said it sure does, but you don't want to have the scans too often. They are not healthy. Then he said all your blood work looks good like it has for 2  years now so we are going to cut you back to once a year for scans.  John 

    CT/PET Scans

    If only your MD was right for all cancers. He is mostly correct for fast growers. However many indolent lymphomas light up very little and are difficult to differentiate from background. The "brightest" node on my PET scan was 2.4 SUV while my normal healthy liver was 2.0 . Large B-cell, Hodgkins or other fast growing lymphomas show 15 SUV  or even higher. This is doubly true for slow growing cancers in the bone marrow - very hard to detect with PET. I had 26% cancerous cells in my marrow but nothing glowed in the PET scan. They were not sure anything was wrong with me and in fact they told me I probably did not have cancer. I heard that story for 3 years. After a biopsy some months after my PET I was found to have Stage IV FNHL with bone marrow involvement. I will always insist on biopsies in the future. Also unfortunately for me, early dtection does not increase overall survival rate for FNHL patients. Its a disease that can be managed but not cured. I am very thankful for Rituxan even though I am having some serious side effects. I still have my life and am enjoying it. Next scan is a CT with oral contrast on March 1st.

  • allmost60
    allmost60 Member Posts: 3,178 Member
    unknown said:

    CT/PET Scans

    If only your MD was right for all cancers. He is mostly correct for fast growers. However many indolent lymphomas light up very little and are difficult to differentiate from background. The "brightest" node on my PET scan was 2.4 SUV while my normal healthy liver was 2.0 . Large B-cell, Hodgkins or other fast growing lymphomas show 15 SUV  or even higher. This is doubly true for slow growing cancers in the bone marrow - very hard to detect with PET. I had 26% cancerous cells in my marrow but nothing glowed in the PET scan. They were not sure anything was wrong with me and in fact they told me I probably did not have cancer. I heard that story for 3 years. After a biopsy some months after my PET I was found to have Stage IV FNHL with bone marrow involvement. I will always insist on biopsies in the future. Also unfortunately for me, early dtection does not increase overall survival rate for FNHL patients. Its a disease that can be managed but not cured. I am very thankful for Rituxan even though I am having some serious side effects. I still have my life and am enjoying it. Next scan is a CT with oral contrast on March 1st.

    Me too...

    Hi GKH,

     I will be getting a CT with contrast also around the first of March. I'll keep you in my prayers and think positive thoughts for both of us to have clean scan reports! Hang in there...waiting for the scan and results is always a bummer, but we do what we have to do to get through this. Stay strong....best wishes...Sue

    (FNHL-grd2-stg3-typA-Dx6/10-age62)