My NED is gone, I think

AnneO1965
AnneO1965 Member Posts: 182
edited December 2020 in Colorectal Cancer #1

So... Does anyone remember in July when I said my onc said there was a tiny nodule on my upper left lung? Well, I had the follow up scan last week, and it's grown. I'll have a PET scan this coming week, followed by a visit with my onc, and then more than likely a biopsy.  She seems fairly confident that it is cancerous and that biopsy will tell us whether is metastatic or a secondary cancer.

I feel like I've been smacked in the face, spit on and then kicked a couple of times. 

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Comments

  • NewHere
    NewHere Member Posts: 1,390 Member
    edited December 2020 #2
    KR-P

    So sorry to see that.  Fingers crossed for good news still for you.  

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    edited December 2020 #3
    One of the drawbacks of being NED

    Is finding out you're no longer in that blessed catagory. 

    When I had my first clear scan, I was grateful for an Oncologist who told me that it meant nothing, and he was right. When my next scan showed spread to the liver, even though I was definitely devestated, I am sure it wasn't as bad as it could have been, had I 'though' I was in the clear. 

    You descirbe the feeling well. Too many of us have been there and done that, and wish we could make it all better for you. 

    But, you know there is still positive things in your future. Just get this little niggle taken care of, and get back to being NED. 

    We're here beside you, all the way. 

    Tru

  • Melanie67
    Melanie67 Member Posts: 24
    Hi. Hope it is not cancer.

    Hi. Hope it is not cancer. But if it is, hoping they can remove it with VATS. I just had my second VATS on November 30th.  One night in the hospital and some mild pain. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited December 2020 #5
    Sorry

    I'm so sorry to hear that.  It has to be difficult to hear this news after thinking you were NED.  Let's hope that there is a good option for follow up.  Wishing you the best.

    Kim

  • Canadian Sandy
    Canadian Sandy Member Posts: 725 Member
    edited December 2020 #6
    Sorry to hear this. I also

    Sorry to hear this. I also may be losing my Ned status. You described it perfectly. Good luck.

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    Hi Annie, where is it located

    Hi Annie, where is it located and size?

    What will the plan be if cancer?

    I have one thats been there all along, it just sits there, very small.

  • darcher
    darcher Member Posts: 304 Member
    edited December 2020 #8
    The "Here we go again"

      I know the feeling all too well.  You think you're out of the woods and, Oh wait, what's this?, another tumor! After getting the exhaust taken care of they found one near the intake.At least it's been caught early enough they will get it taken care of quicly so you might want to look on the bright side, so to speak. Regarldess, it's part of this mess we felll into. Let us know how this goes and trust that we're all pulling for you.  

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member
    Boy, do I know that feeling,

    Boy, do I know that feeling, twice for real after slow changes over years, rising numbers CT's with regular PET's to follow. Even after the third and final cancer surgery; scans, biopsies, needle effusions pulling liters out of the one lung. Scary mind messing stuff. Yet here I am, NED 13+ years later. It's a hard mental/emotional ride that even if you're good at compartmentalizing, it still comes back up on calendars and appointments, regularly. Not intending to worsen your concerns, I'm just saying it's a longer roller coaster than most of us ever imagined, wanting to be clear, and feeling it pull you back, again. Have faith they'll get it, and that you can still find those good times in between things, until it finally lets go a bit. I'm clear, but will never feel totally over it, I no longer trust that state of mind. I'm at peace through the mindfulness and stoicism I had to learn to cope with it all. I hope it turns out to be nothing, or is very treatable, and you get back to a more comfortable state of mind, Anne. Find whatever can bring you a mental peace, even if it only comes in 'chunks', and enjoy the holidays. I'm rooting for you..........................................Dave 

  • abita
    abita Member Posts: 1,114 Member

    Boy, do I know that feeling,

    Boy, do I know that feeling, twice for real after slow changes over years, rising numbers CT's with regular PET's to follow. Even after the third and final cancer surgery; scans, biopsies, needle effusions pulling liters out of the one lung. Scary mind messing stuff. Yet here I am, NED 13+ years later. It's a hard mental/emotional ride that even if you're good at compartmentalizing, it still comes back up on calendars and appointments, regularly. Not intending to worsen your concerns, I'm just saying it's a longer roller coaster than most of us ever imagined, wanting to be clear, and feeling it pull you back, again. Have faith they'll get it, and that you can still find those good times in between things, until it finally lets go a bit. I'm clear, but will never feel totally over it, I no longer trust that state of mind. I'm at peace through the mindfulness and stoicism I had to learn to cope with it all. I hope it turns out to be nothing, or is very treatable, and you get back to a more comfortable state of mind, Anne. Find whatever can bring you a mental peace, even if it only comes in 'chunks', and enjoy the holidays. I'm rooting for you..........................................Dave 

    What are the needle effusions

    What are the needle effusions pulling liters from one lung? And I ask only because I see on my scan reports they mention something like effusions around my lung tuors.

  • AnneO1965
    AnneO1965 Member Posts: 182
    edited December 2020 #11
    Update

    Ok, so it is cancer, goodbye NED. What kind of cancer? We don't know yet. My oncologist is sending me to a lung doctor to have a look.  If it's a secondary lung cancer, it's probably a cut it out with the likelihood of no chemo... If it's metastatic crc, it's cut it out with at least 6 months of chemo.. Probably folfox again...

    So, as weird is this may sound, if you all could offer up prayers that it is lung cancer, I'd greatly appreciate it..

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    AnneO1965 said:

    Update

    Ok, so it is cancer, goodbye NED. What kind of cancer? We don't know yet. My oncologist is sending me to a lung doctor to have a look.  If it's a secondary lung cancer, it's probably a cut it out with the likelihood of no chemo... If it's metastatic crc, it's cut it out with at least 6 months of chemo.. Probably folfox again...

    So, as weird is this may sound, if you all could offer up prayers that it is lung cancer, I'd greatly appreciate it..

    We do weird here

    You have my sinceres thoughts and prayers.  

    The though of a second round with FOLFOX has got to be duanting. Le'ts hope it is just a matter of snip, snip and off home you go. 

    Tru

  • Melanie67
    Melanie67 Member Posts: 24
    AnneO1965 said:

    Update

    Ok, so it is cancer, goodbye NED. What kind of cancer? We don't know yet. My oncologist is sending me to a lung doctor to have a look.  If it's a secondary lung cancer, it's probably a cut it out with the likelihood of no chemo... If it's metastatic crc, it's cut it out with at least 6 months of chemo.. Probably folfox again...

    So, as weird is this may sound, if you all could offer up prayers that it is lung cancer, I'd greatly appreciate it..

    If it is CRC could you do

    If it is CRC could you do  xeloda.  I did six months after my first VATS and just had my second VATS. I will do three months of Xeloda this time. I find Xeloda much easier than FOLFOX. 

  • NewHere
    NewHere Member Posts: 1,390 Member
    edited December 2020 #14
    AnneO1965 said:

    Update

    Ok, so it is cancer, goodbye NED. What kind of cancer? We don't know yet. My oncologist is sending me to a lung doctor to have a look.  If it's a secondary lung cancer, it's probably a cut it out with the likelihood of no chemo... If it's metastatic crc, it's cut it out with at least 6 months of chemo.. Probably folfox again...

    So, as weird is this may sound, if you all could offer up prayers that it is lung cancer, I'd greatly appreciate it..

    I Was In That Boat

    A spot on my lung, which was there from the beginning in all likelihood, but did not grow until after I was done with chemo.

    It was still small, so when I met with the lung surgeon I was told it could be (a) benign, (b) lung cancer or (c) a met to the lung.  I was told that was the preferable order.  That lung cancer would be easier/better than a met to the lung.  It was a met.  But I did not have chemo after.  

    I am still hoping somehow it winds up being benign for you.  But otherwise, yes I hope it is lung cancer. (And it feels really weird saying that to you.  But I understand why.)

  • abita
    abita Member Posts: 1,114 Member
    edited December 2020 #15
    NewHere said:

    I Was In That Boat

    A spot on my lung, which was there from the beginning in all likelihood, but did not grow until after I was done with chemo.

    It was still small, so when I met with the lung surgeon I was told it could be (a) benign, (b) lung cancer or (c) a met to the lung.  I was told that was the preferable order.  That lung cancer would be easier/better than a met to the lung.  It was a met.  But I did not have chemo after.  

    I am still hoping somehow it winds up being benign for you.  But otherwise, yes I hope it is lung cancer. (And it feels really weird saying that to you.  But I understand why.)

    Do you still have it? 

    Do you still have it? 

  • NewHere
    NewHere Member Posts: 1,390 Member
    edited December 2020 #16
    abita said:

    Do you still have it? 

    Do you still have it? 

    Abita, I Think You Were Asking Me?

    Was not sure, I think it was in reply to my post?  Was not sure...and did not want to answer for someone else.  The lung met?

  • abita
    abita Member Posts: 1,114 Member
    NewHere said:

    Abita, I Think You Were Asking Me?

    Was not sure, I think it was in reply to my post?  Was not sure...and did not want to answer for someone else.  The lung met?

    yes

    yes

  • NewHere
    NewHere Member Posts: 1,390 Member
    abita said:

    yes

    yes

    LOL

    I am on chemo this week and next, so let's blame chemo for my dumbness, shall we?  :)  

    I had surgery on the lung back in 2016 (same surgeon as the one who did the surgery on Ruth Bader Ginsberg).  The biopsy showed it was a met of CRC.  Was not too shocked.  By the time the found my CRC and had the surgery, it was in 12 of the 21 lymph nodes that were removed.  This was there from the beginning on scans, just too small to tell.  It may have shrunk a tad on FOLFOX (but was real small, so hard to tell), then when off FOLFOX it started getting bigger.  Resected part of the left lung.  But the horse was long out of the barn based on the lymph nodes it seems. 

  • abita
    abita Member Posts: 1,114 Member
    edited December 2020 #19
    NewHere said:

    LOL

    I am on chemo this week and next, so let's blame chemo for my dumbness, shall we?  :)  

    I had surgery on the lung back in 2016 (same surgeon as the one who did the surgery on Ruth Bader Ginsberg).  The biopsy showed it was a met of CRC.  Was not too shocked.  By the time the found my CRC and had the surgery, it was in 12 of the 21 lymph nodes that were removed.  This was there from the beginning on scans, just too small to tell.  It may have shrunk a tad on FOLFOX (but was real small, so hard to tell), then when off FOLFOX it started getting bigger.  Resected part of the left lung.  But the horse was long out of the barn based on the lymph nodes it seems. 

    Plus, I ask a lot over and

    Plus, I ask a lot over and over about lung mets too. Chemo shrinks my liver mets, but the lung mets are so much harder. The fact that they are relatively stable is a good thing. and I want them to GO!. I also don't understand the preference of lung cancer. My aunt was diagnosed with lung cancer, went on a chemo drug and immunotherapy, and died within a year.

  • AnneO1965
    AnneO1965 Member Posts: 182
    This is what I understood,

    This is what I understood, but I could be completely wrong.  If it's lung cancer, it's small enough that they can cut it all out with little to no complications.. If it's a mets, it means the original cancer has spread, so the chemo and everything else didn't kill it all so it's almost like starting over...as I said, I could be wrong...

  • abita
    abita Member Posts: 1,114 Member
    edited December 2020 #21
    AnneO1965 said:

    This is what I understood,

    This is what I understood, but I could be completely wrong.  If it's lung cancer, it's small enough that they can cut it all out with little to no complications.. If it's a mets, it means the original cancer has spread, so the chemo and everything else didn't kill it all so it's almost like starting over...as I said, I could be wrong...

    I see . It isn't the type of

    I see . It isn't the type of cancer, it is the difference between the crc being stage 4, and lung would be stage 1. Thanks.