The plan is in place

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
Well, we have a plan. So, I sometimes make fun of my stepdad who always wants a plan. He'll ask, "What's the plan?" or "Do we have a plan?" He needs plans. I'm more go with the flow, most of the time. But in this case I have really wanted and needed a plan! I've been going crazy.

Next Tuesday I will have a PET/CT scan to see if there is any reason that can be found for why my CEA has suddenly risen to 8 after being 2 since last December, and still 2 in May. I know the amount of radiation I've had in the last year is too much. But I'd rather risk it than possibly be letting cancer grow somewhere. The timing is kind of scarey. August 31 last year is the day that forever changed my life - the day the big obstructing cancerous tumor was discovered. I'm hoping this year on August 31, it is a big bust - NO tumors to be found.

I have my next appointment with my oncologist scheduled already for two months from now. I'm not on our original schedule anymore. Instead of 3 month labs and 6 months scans, we scan now, and repeat labs in 2 months. I am supposed to get my labs before I see him again so we have the numbers for my appointment. We are going on the assumption that my scan will be clear. Then it wouldn't make sense to even check CEA for a while because we can't scan again for at least two months. If there is something growing that is too small to see now, it needs time to grow large enough to find. If my scan is clear and my CEA is 9 or lower in two months, we wait two more months and re-check. I'll be on a 2 month lab schedule for a while. If it jumps up to 12 or more we'll re-scan. 10 or 11 is kind of a grey area for now.

He is giving the nurse the permission to discuss my scan with me. I will call them next Wednsday and she'll let me know. If they see anything we'll make an appointment to see the oncologist - if not, then I'm all set till the end of October.

So, I really don't have any answers yet, but I do have a plan! And that is at least a little comforting to me. Maybe I understand my stepdad a little more now. :)

Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
    Kathryn,
    I am glad you a
    Kathryn,

    I am glad you a plan + here's hoping for great scan results!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
    glad you have a plan
    Hi Kathryn,

    Glad there's a plan in place! That's always one step in feeling like things are being managed. I do hope that nothing shows on the scan, but it's a good thing to find out. My scan is on Monday as my CEA has shot up to 81 now.
    I know you'll let us all know when you find out your results, as will I. I'll have my results on Tuesday.

    Best wishes,
    Lisa
  • ktlcs
    ktlcs Member Posts: 358
    #4
    lisa42 said:

    glad you have a plan
    Hi Kathryn,

    Glad there's a plan in place! That's always one step in feeling like things are being managed. I do hope that nothing shows on the scan, but it's a good thing to find out. My scan is on Monday as my CEA has shot up to 81 now.
    I know you'll let us all know when you find out your results, as will I. I'll have my results on Tuesday.

    Best wishes,
    Lisa

    Kathryn
    Having a plan at least gets you one step closer to the answer. Good Luck on a clean scan

    Kathy
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    ktlcs said:

    Kathryn
    Having a plan at least gets you one step closer to the answer. Good Luck on a clean scan

    Kathy

    good luck
    Your scan will be clear you will see!!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #6
    lisa42 said:

    glad you have a plan
    Hi Kathryn,

    Glad there's a plan in place! That's always one step in feeling like things are being managed. I do hope that nothing shows on the scan, but it's a good thing to find out. My scan is on Monday as my CEA has shot up to 81 now.
    I know you'll let us all know when you find out your results, as will I. I'll have my results on Tuesday.

    Best wishes,
    Lisa

    Lisa
    Good luck with your scan as well.
  • slamb58
    slamb58 Member Posts: 31
    #7
    Praying for a clear scan..
    Plans are definitely and good thing, especially for all of us fighting this hateful disease. I am praying for a clear scan for you, and the rise in the CEA is just nothing more than a fluking thing going on.
  • sasjourney
    sasjourney Member Posts: 395 Member
    #8
    Great Plan!
    It is great to have a plan in place. We'll wait to hear the good results. Stay positive!

    Hugs,
    Sara
  • HollyID
    HollyID Member Posts: 946 Member
    #9
    Kathryn,
    glad that there is a plan in place.

    Hoping and praying that your scan is negative.

    Love and Hugs,

    Holly
  • grammadebbie
    grammadebbie Member Posts: 464
    #10
    Kathryn, I will be praying
    Kathryn, I will be praying for you and am happy you have a plan. It seems to help settle my mind a little if I have some idea what is going on and what I'm going to do.

    Big Hugs and Prayers,

    Debbie
  • PGLGreg
    PGLGreg Member Posts: 731
    #11
    All your other friends here
    All your other friends here seem to agree with your stepdad. Gotta have a plan. And you do have one --- sounds great!

    --Greg
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #12
    Good to have a plan
    With all medical things it is good to have a plan.

    Here is hoping that the CEA stays steady or goes down and that 8/31/2010 becomes a great day for you to remember when the scan is all clear!

    Please keep us posted on how the plan goes.

    Marie who loves kitties
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #13
    grammadebbie said:

    Kathryn, I will be praying
    Kathryn, I will be praying for you and am happy you have a plan. It seems to help settle my mind a little if I have some idea what is going on and what I'm going to do.

    Big Hugs and Prayers,

    Debbie

    Kathryn
    In college I was that crazy girl that had a plan for everything. I had my daily To-Do list and at bedtime there I was making my list for the next day. Looking back now I can saw I had a little OCD!!LOL Anyways, I love your plan! I hope that all will be well with your scan and the rise in the CEA is just a fluke. -Melissa
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #14
    Good plan
    Excellent! Hope it comes out all clear!!! I know you're anxious about it. I'll be praying for you!

    *hugs*
    Gail
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #15
    Thanks Anne
    Thanks for the good scan wishes, too. :)

    Lisa
  • SandyL
    SandyL Member Posts: 218
    #16
    lisa42 said:

    Thanks Anne
    Thanks for the good scan wishes, too. :)

    Lisa

    It's good
    to have a plan (Stan). Just kidding, of course you are not Stan! I hope the best scan possible for you and also for Lisa. It's always good to have a plan. And I sure hope that yours will be clear.
    Sandy
  • Paula G.
    Paula G. Member Posts: 596
    #17
    SandyL said:

    It's good
    to have a plan (Stan). Just kidding, of course you are not Stan! I hope the best scan possible for you and also for Lisa. It's always good to have a plan. And I sure hope that yours will be clear.
    Sandy

    A good luck on both of your
    A good luck on both of your scans Kathryn and Lisa. Keep up informed and I'm thinking of you. Paula
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #18
    lisa42 said:

    glad you have a plan
    Hi Kathryn,

    Glad there's a plan in place! That's always one step in feeling like things are being managed. I do hope that nothing shows on the scan, but it's a good thing to find out. My scan is on Monday as my CEA has shot up to 81 now.
    I know you'll let us all know when you find out your results, as will I. I'll have my results on Tuesday.

    Best wishes,
    Lisa

    Lisa
    You've ridden the CEA rollercoaster more than most of us. I hope your scans show no new growth. I know CEA can go up during treatments as cancer cells die off too. It is such a crazy marker that has so many variables, but still it can be helpful in finding new growth and making or changing the attack plan if needed.

    I complain about my worry of my CEA at 8, and yours is 10 times mine. That puts it back in perspective for me. I only had to worry about mine when it was rising last fall. Since December I stayed at 2. I haven't been on the rollercoaster ride.

    Please let me know your results on Tuesday. I'm praying for no new growth for you.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #19
    Thanks everyone
    Yep - sometimes just having a plan takes away a lot of anxiety. I feel like if something has started growing again, or does start to grow, we'll be on top of it for sure. This is a fairly aggressive follow-up schedule now. As aggressive as we can be.

    A guy in my support group has the same onc and is a couple years younger than me. He was a stage III patient at the start also. Our onc is known for being very aggressive with his younger patients. And after we are done with treatment, he does labs and scans a little more often than some of the other oncs. Brian was NED for a year after FOLFOX. But the onc kept him on the 6 month scan schedule. And just one lymph node lit up. It was malignant. They caught it very early and did FOLFIRI and he is NED again. So at least if something grows again, we should catch it very early.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #20
    Kathryn_in_MN said:

    Thanks everyone
    Yep - sometimes just having a plan takes away a lot of anxiety. I feel like if something has started growing again, or does start to grow, we'll be on top of it for sure. This is a fairly aggressive follow-up schedule now. As aggressive as we can be.

    A guy in my support group has the same onc and is a couple years younger than me. He was a stage III patient at the start also. Our onc is known for being very aggressive with his younger patients. And after we are done with treatment, he does labs and scans a little more often than some of the other oncs. Brian was NED for a year after FOLFOX. But the onc kept him on the 6 month scan schedule. And just one lymph node lit up. It was malignant. They caught it very early and did FOLFIRI and he is NED again. So at least if something grows again, we should catch it very early.

    Kathryn.....
    I am sorry that you have to worry about this but the best thing about something like this if it is something then it is quick found and quickly taken care of...We are monitored so close that hardly nothing goes on with us for very long that's not caught. If there is a bright side to all this mess it is because we are monitored so closely....Hang in there and go with the flow, and don't read anything into it until there is something to worry about. Cover all bases to satisfy Numero Uno....you, and it will be ok...and so will you...Love to you and yours.....Buzz

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