Follow-ups and counting

carich
carich Member Posts: 25 Member
edited December 2022 in Uterine/Endometrial Cancer #1

I'm wondering when the actual counting of "how many months NED" begins. Is it the day after surgery? After the "no residual cancer" report shows up after a post-surgical PET scan (which I received "out of an abundance of caution")? After post-surgical treatment wraps up? Or at the first follow-up appointment after treatment? Where to begin? I bet it's different for everyone.

Thanks in advance. It's the little things that lets me relax. I love this group.

Carol

Comments

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #2

    My doctors count it from after the last chemo or radiation and then you get a clear scan as NED. So for me my last chemo was October 25, 2018, I had the scan about November 15th 2018, and was declared NED after that. I just passed my four year mark and they finally noted that I was "in remission", which they had not declared before and I don't know if that was just their own way of noting it or it was getting past the 4 year mark. I will officially be "cured" if I make to the 5 year mark and they "graduate" me, according to my last checkup. I would assume that there is some standard regarding NED but also would not be surprised that different institutions and doctors have different definitions.

    Denise

  • cmb
    cmb Member Posts: 1,001 Member
    #3

    My doctor uses date of last treatment. But in reading medical research articles, I’ve read that some researchers start “counting” from the date when initial treatment began.

    Personally, I keep two dates in mind: the date of my surgery (initial treatment) and the date I finished radiation (my last treatment).

  • carich
    carich Member Posts: 25 Member
    #4
    https://csn.cancer.org/discussion/comment/1701819#Comment_1701819

    Denise/BluebirdOne,

    This is very helpful, thanks. It'll be a bit different for me, I think, because more scans aren't recommended until 3-4 months after radiation is complete. My last treatment was November 14, 2022. I did have a PET/CT scan around September 29 that showed "no (active) cancer." That was two weeks before radiation started. It's all so confusing.

    If one has (had) cancer, patience is a virtue!

    Congratulations on your remission status! That makes me smile. You're doing great!

    Carol

  • carich
    carich Member Posts: 25 Member
    #5
    https://csn.cancer.org/discussion/comment/1701820#Comment_1701820

    cmb,

    That's helpful. They are so far apart...July 29, 2022 and November 14. Always etched into my memory!

    Carol

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #6
    https://csn.cancer.org/discussion/comment/1701821#Comment_1701821

    Now that I thought about this for a bit, NED also depends upon the treatment plan you have, some do not even have chemo and/or radiation or the same chemo schedule. As time goes on, the few months difference from when they start counting at the start or end of treatment or scans doesn't matter as long as you are consistent.

    Denise

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,512 Member
    #7

    My onc told me it is from the last day of treatment. It makes sense. Since I had the sandwich (chemo/radiation/chemo) I know the date and remember ringing the bell that last day.

  • carich
    carich Member Posts: 25 Member
    edited November 2022 #8

    NoTimeForCancer,

    Thanks! I felt joy when I read you "remember ringing the bell that last day." Truly wonderful.

  • dailyprayer
    dailyprayer Member Posts: 4 Member
    #9

    Hi, I'm new here, having been diagnosed Nov 2 and having surgery Nov 28. My scan didn't show any spread of disease, but I will still have to have chemo because of the type and grade I have. Any tips or helpful hints you can share would be so greatly appreciated. I feel thrust into a very foreign environment, not really understanding what my future holds.

  • cmb
    cmb Member Posts: 1,001 Member
    #10
    https://csn.cancer.org/discussion/comment/1701944#Comment_1701944

    I’m sorry you had to find your way here, but glad that you found this site early in your treatment. You’re at the start of a process that most of us have found new, sometimes confusing and often stressful. You might find the topic “Tips for surgery and after?” helpful now, but please feel free to ask any questions that you might have. We’re here to support you during this difficult time.

  • carich
    carich Member Posts: 25 Member
    #11
    https://csn.cancer.org/discussion/comment/1701819#Comment_1701819

    Congratulations! You're well on the way. I hope to join you there eventually! I'm still only into my third week after my last treatment. But I had an "all clear" PET/CT in late September, so that counts for something! My 23 radiation treatments were given because of a suspicion that some dormant cancer cells escaped into the vessels that once led to my removed lymph nodes. There was a tumor that invaded 100% into the uterine wall in that spot. The rest was invaded by 75%. I loved the comment by my surgeon and Ob/Gyn onc that the PET was done with an abundance of caution. Good docs. I guess I'll find out my official NED standing at my first true follow-up in two weeks.

    Thanks for listening. I guess "too much information" isn't a thing here! Sharing feels great.

    Carol

  • carich
    carich Member Posts: 25 Member
    #12
    https://csn.cancer.org/discussion/comment/1701944#Comment_1701944

    dailyprayer,

    It's great that your scan showed no signs of spread. It's something you can truly hold onto as you navigate your future. How are you doing today? It's been just three days since your surgery, right? How are you managing your meds, nausea, etc? Have you been on your daily walk today? I find it really helps! Sending support and love,

    Carol

  • dailyprayer
    dailyprayer Member Posts: 4 Member
    #13
    https://csn.cancer.org/discussion/comment/1701964#Comment_1701964
    https://csn.cancer.org/discussion/comment/1701964#Comment_1701964

    Thank you very much. I'm very grateful for this site to connect with other survivors.

  • dailyprayer
    dailyprayer Member Posts: 4 Member
    #14
    https://csn.cancer.org/discussion/comment/1701964#Comment_1701964
    https://csn.cancer.org/discussion/comment/1701964#Comment_1701964


  • dailyprayer
    dailyprayer Member Posts: 4 Member
    #15
    https://csn.cancer.org/discussion/comment/1701964#Comment_1701964

    I'm doing well, thank you. Getting comfortable sleeping is a problem as I don't like sleeping on my back and have had pain in my shoulder from the gas, but don't sweat the small stuff, right. Other than that, so far so good. I have a treadmill I will be using since walking outside isn't always an option where I live. I will find out more at my follow up appt. Thanks for the support.

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