NED NED.... or not so NED Today

Yolllmbs Member Posts: 360 Member

Its certainly a roller coaster ride.  Yesterday, we wer celebrating NED (no evidence of disease).  I receive a call from my surgeion this morning who is referring me to the oncology surgeon.  The mass is the size of a grapefruit.  It was not there last year when they did the ct scan.  The biopsy came back benign but my surgeon's fears are that the area they biopsied was benign but perhaps the whole mass isn't.  Her concern is in how fast it has grown.  My CEA has not raised.  I ased if it was in any of my organs.  She said it was not n the organs but was touching many of my internal organs.  My next appointment is March 30.  Until then, we run the gambit from everything is terrific to oh **** now what.   I HATE THE WAITING GAME!  We did celebrate last night. Let's hope it wasn't prematurely.




  • Trubrit
    Trubrit Member Posts: 5,800 Member
    No celebration is wasted

    You were happy last night, so a celebration was warrented. 

    I am so SOOOOO sorry to hear this news, though I was wondering if they were going to do anything with your 'mass' benign or not. Get it removed one way or the other, you're better off without it. And think of all the weight you will lose. Its surprising how a growth can distort your body. You'll be looking all slim and sexy when its gone. 

    I'm with you on the wait. 30th March seems an age away. Maybe you can push to get it moved closer. Give it a try. 

    HUGS HUGS and more HUGS  image .

    Sue - Trubrit


  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Yolanda,

    In my opinion a grapefruit size of anything is not a joke. Of course it's better is benign than cancerous, but it needs attention. Let's hope for a quick resolution for you. I wish you strength and patience until the 30th.


  • NewHere
    NewHere Member Posts: 1,427 Member

    Thoughts with you on this.  The back and forth is so rough.  

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    OMG, this is more than a

    OMG, this is more than a rollercoaster ride. I will continue to pray for you.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    I am sorry to hear that. We

    I am sorry to hear that. We ride the biggest fastest scariest roller coaster in the world. Get the mass removed no matter what ASAP. It is true that there can be benign cells mixed in. That is why they don't like to do biopsies on smaller tumors in fear they will keep getting benign cells.

  • LindaK.
    LindaK. Member Posts: 506 Member

    Boy, what a shock for you.  I'm so sorry your first call did not give you some warning about the size of the mass.  Well, I'm glad you were able to celebrate, now on to the next battle.  Surgeons and oncologists seems to live in different worlds.  When my husband had his first recurrence, the surgeon told us late that night "We got it all and it was all dead tissue" which I took to mean as good news.  When the stupid former onc finally came to see him 5 days later (and his office is connected to the hospital my husband was in) he dropped the Stage IV bomb and gave him the 2 year outlook.  We were quite frankly shocked and had no idea.  I wish they would get on the same page.  They blamed each other's staff for not getting messages to each other and claimed they called each other 2 times.  I don't believe them.  I agee with janderson, get that thing out ASAP and hopefully you'll be NED still.  Best of luck, but waiting for the 30th does seem cruel.  Maybe you can call and get in sooner.  Best of luck


  • BillO60
    BillO60 Member Posts: 72
    Best Wishes for the Best Possible Outcome


    You have my wishes for the best possible outcome. I'm starting to understand that this is like playing Texas Holdem poker. You never know what your hand is going to be until the final card is turned over.  Always celebrate all the hands you've won and only worry about the next hand after its been dealt.  Here's hoping you draw a royal flush. 

    Okay, sorry for all the poker references, I just binge watched the complete season 12 of the world poker tour...


  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I really hope it all turns out ok...

    it's just so painful dealing with all this uncertainty.  Are they going to be removing the mass?