Got some answers

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
in Colorectal Cancer #1
I asked my colon cancer nurse navigator to assist me in getting more info from the radiologist that read my last two PET/CT scans. They talked about a node in my chest, and 2 in my abdomen that were still enlarged and active (but shrinking and getting less active). But with the abdomen, the wording was "for instance" before talking about just two. So I had no idea if there were 2, 3, or 20 active nodes in my abdomen.

The radiologist was on vacation two weeks ago, so the navigator left him a message to call me and speak to me directly when he returned. He never called. My navigator was on vacation last week. She called me now and said that she spoke with the radiologist.

I have just the one node in my chest, and 3 or 4 in my abdomen. He said he can't be sure about the 4th node - due to placement and the angle of the scan, he can't tell if it is 1 or 2 nodes. I've never heard of this. Has anyone else? (Especially since that is the answer for two scans in a row.)

I am relieved to know that at most I have 5 nodes with cancer right now, and not 20!!! I've had a partial response to chemo, but not a full response, but I can live with that too. It is shrinking, and not spreading, even though it is shrinking slower than usual this time. My onc is happy with stable, although I'd like to see the illusion of NED again...

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    The Illusion of NED
    Indeed, Kat:)

    I'm currently under that spell at this time - but don't really expect it to last. The words are real nice, but I'd rather trade them in for what's behind door #2?

    I like that phrase and that may be a paragraph where I can tie that phrase in, hmmm. I'm rewriting the "chemo wars" chapter right now. I'm going to study on it some.

    And just like Ma Bell used to tell us, "Stable - it's the next best thing to being there."

    Hey, I like that one, too:)

    -Craig
  • kristasplace
    kristasplace Member Posts: 957 Member
    #3
    Sundanceh said:

    The Illusion of NED
    Indeed, Kat:)

    I'm currently under that spell at this time - but don't really expect it to last. The words are real nice, but I'd rather trade them in for what's behind door #2?

    I like that phrase and that may be a paragraph where I can tie that phrase in, hmmm. I'm rewriting the "chemo wars" chapter right now. I'm going to study on it some.

    And just like Ma Bell used to tell us, "Stable - it's the next best thing to being there."

    Hey, I like that one, too:)

    -Craig

    The nodes know
    I'm also glad it's not 20 nodes! Thank goodness you've gotten answers. it can be really frustrating when our health care professionals seem so complacent with us. Many times i think they are! Keep it up Kathryn; you'll hear the words NED someday, and it will remain so!

    Good to see you Craig! I know i'm not on here very often. I hear you're writing the book? Congrats on that. Writing a book isn't easy, i know!

    Love to you both!
    Krista

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