does this mean i am stage 4 now ? need some prayers and rainbows

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
in Colorectal Cancer #1
Dear friends,

its back, my old enemy must have been hiding!

i have had a few tears recently. I don't want to be a downer but where else can i go.
I guess I am on the cea bandwagon now.

The conference was fantastic, a wonderful, educational and inspiring weekend.
I got home and had my regular blood tests and cat scan.

I got some challenging news, my cea was 6 and previously its always been nil since surgery 14 months ago.

The cat scan was clear, nothing found anywhere. so i suspect i have a small crc somewhere, thats not visible on the cat. the joys of crc.

So tomorrow i have a pet scan, send me a rainbow if you can. I have had a few tears as
now i am back in the cancer game of life for real.

My surgeon and onc seemed very concerned and just put me in for the pet immediately.

My surgeon indicated that if surgery is an option it will be early january.

Still meditating, juicing, taking supplements, tcm and exercising. I am the healthiest and
strongest I have ever been and now its time for the second set.

I still have faith that my alternatives have helped me. Anyway tomorrow is another day
I can rest and take it easy and get pet scanned. at least now i can meditate for the few hours the test takes.

A few kind thoughts and prayers coming my way would be appreciated.

God bless us all.

hugs,
pete
«13

Comments

  • janie1
    janie1 Member Posts: 753 Member
    #2
    sorry Pete
    Sorry that the cea is causing concern. If it is something, knock it out, cut it out, whatever it takes and keep doing what you are doing. You'll be the winner
  • taraHK
    taraHK Member Posts: 1,952 Member
    #3
    feed the faith
    Hey Pete. Sorry to hear about the CEA. Your doctors and you are, of course, completely right in taking the rise in CEA seriously and in thoroughly investigating. However, I'm still going to consider it a "blip" until more information comes in!! The wonderful expression I learned on this board "Feed the faith, starve the fear"....If it turns out to be not-so-good, I know you will tackle it with your usual style and determination -- and, I hope, with the love and support of our loving friends on this board. Until then -- keep breathing in and out!

    Love,
    Tara
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #4
    Act, contain, watchful wait, and snip, as needed
    Pete, hopefully it will be a transient mystery meat elevation.
    -------------------------
    Near this point we ramped up from inadequate stage III daily chemo (nominally CIM-300mg UFT-PSK) to a stage IV dose including leucovorin (at last) CIM-UFT-LV-PSK, along with mostly natural adjuvants between "checkerboarding targets" and "kitchen sink". The idea, +- stop/slow growth of the exisiting met is good, to prevent more mets is crucial. We chose daily treatment, 24x365 no breaks - not too bad with supplements and special diet, as our best way to inhibit new metastases based on the literature.

    It's nerve racking, because you hope you've got it contained correctly, where for one reason or another you have to wait. In your case, either the CEA turns out to be a fart elevation (hope, hope, hope), or something eventually swims into view after so many months, so it can be cut out. In our case the wait was the argy-bargy of getting a surgeon that would do the job, "We've got it contained, now cut the smokin' thing out. Please!". We pay for our own CA19-9 blood tests - we didn't have time to educate the (measly) insurers or oncs. COX2 tissue marker has been slower for us, but we hit COX2 anyway, mostly naturally. The first CA19-9 test is the most important one, preferably before first surgery.

    We focus on tight spaced CBC, ESR, CA19-9 and CEA for "progress reports." Out of our pocket. Btw, to implement the plan, we would up using other doctors rather than oncs.
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #5
    tanstaafl said:

    Act, contain, watchful wait, and snip, as needed
    Pete, hopefully it will be a transient mystery meat elevation.
    -------------------------
    Near this point we ramped up from inadequate stage III daily chemo (nominally CIM-300mg UFT-PSK) to a stage IV dose including leucovorin (at last) CIM-UFT-LV-PSK, along with mostly natural adjuvants between "checkerboarding targets" and "kitchen sink". The idea, +- stop/slow growth of the exisiting met is good, to prevent more mets is crucial. We chose daily treatment, 24x365 no breaks - not too bad with supplements and special diet, as our best way to inhibit new metastases based on the literature.

    It's nerve racking, because you hope you've got it contained correctly, where for one reason or another you have to wait. In your case, either the CEA turns out to be a fart elevation (hope, hope, hope), or something eventually swims into view after so many months, so it can be cut out. In our case the wait was the argy-bargy of getting a surgeon that would do the job, "We've got it contained, now cut the smokin' thing out. Please!". We pay for our own CA19-9 blood tests - we didn't have time to educate the (measly) insurers or oncs. COX2 tissue marker has been slower for us, but we hit COX2 anyway, mostly naturally. The first CA19-9 test is the most important one, preferably before first surgery.

    We focus on tight spaced CBC, ESR, CA19-9 and CEA for "progress reports." Out of our pocket. Btw, to implement the plan, we would up using other doctors rather than oncs.

    hey pete
    sorry to hear about your rising cea.try not to think about the worst and hope for the best.prayers are with you and yes keep the faith....Godbless....johnnybegood
  • tko683
    tko683 Member Posts: 264 Member
    #6
    sending prayers your way
    Pete,
    You have an amazing attitude....and it sounds like you are doing all the right things...I will pray for good results with your PET. Hugs, Teri
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #7
    Pete
    Maybe or maybe not, Pete...

    The CT is clear. Even if the PET lights up, that's not an absolute indicator of cancerous activity. Perhaps, but not definitive.

    I had a situation where the CT showed a mass - the PET lit up with a high SVU value - we did surgery and biopsied - and that tumor was benign. The only one that has been, but still....all the tests leaned one way and when we cut it out, it was a complete 180. My CEA was raised as well, but not outrageously so.

    So, even if the PET lights up, you have to ask yourself do you really want to do the surgery at this moment? Or give it another scan cycle to check growth and monitor your CEA to see if rises?

    If it's not seen on the CT, then it's too small to biopsy - and even if you could, would you be able to trust the findings one way or the other? Biopsies are 'hit and miss' anyway, but especially when they are this tiny.

    I'll hope that this is something else right now, but agree that getting things looked at is a good idea. If things become what we don't want them to be, I'll talk with you some more - but for now, I'll table what I wanted to tell you, if or when, we get to that spot.

    It won't rain in Texas, so I can't send a rainbow, but will send good thoughts your way.

    As your countrymen say, "No worries, mate."

    -Craig
  • toyfox
    toyfox Member Posts: 158 Member
    #8
    Need some prayers
    I cried when I read this. I'm praying for the best for you.
    Linda
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #9
    toyfox said:

    Need some prayers
    I cried when I read this. I'm praying for the best for you.
    Linda

    Pete my mate! CEA at 6 and clear scans still gives you a big
    chance to be NED, y pray for that I'm sure it's only a false alarm!.
    Hugs my dear Friend!
  • geotina
    geotina Member Posts: 2,111 Member
    #10
    Pete:
    George and I know very well the kick in the gut feeling you are experiencing now. Sometimes, even when we do everything we possibly can, that sneaky cell decides to act up. Rising CEA is concerening but 6 is still low. Sounds like your docs are on top of it. Craig gave you some very good advise. Take it one day at a time, one test at a time and do whatever is necessary and what is right for you.

    Take care - Tina
  • laurettas
    laurettas Member Posts: 372
    #11
    geotina said:

    Pete:
    George and I know very well the kick in the gut feeling you are experiencing now. Sometimes, even when we do everything we possibly can, that sneaky cell decides to act up. Rising CEA is concerening but 6 is still low. Sounds like your docs are on top of it. Craig gave you some very good advise. Take it one day at a time, one test at a time and do whatever is necessary and what is right for you.

    Take care - Tina

    Aw, Pete,
    how nerve-racking for you. I agree with everyone to keep breathing until you know something for sure. Maybe you just have an infection or inflammation somewhere. We will be praying for that. You have worked so hard--keep up the positive outlook and we'll be cheering for you!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #12
    Scan
    You are in my thoughts and prayers for a clean PET. 6 is not very high as the high normal is 5 so you are only 1 point above normal. Hopefully it was a misreading. I'm thinking it was NanaB whose CEA kept going up and she had a PET and it showed nothing. Sometimes it just goes up. Good luck and keep the faith.

    Hugs! Kim
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #13
    Hi Pete,this is definitely
    Hi Pete,this is definitely not the news we want for you,especially in this holiday season.I hope this is going to be a minor problem and the doctors can take good care of it.You are in my prayers.Best wishes to you.
  • jasminsaba
    jasminsaba Member Posts: 157 Member
    #14
    Praying for you ...
    Pete - I'm praying for you. I hope that the rise in CEA is nothing and that you continue on your path to a full recovery. Blessings to you and yours.
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #15
    Rachel
    Has had her cea rising up and down, thankfully she's ok. I hope and pray there is nothing sinister going on. Cea is also used to test inflammation in the body, could be anything, might be a virus. 6 isn't a huge increase, but can definitely understand your fears. It's good your medical team are being proactive.
  • tommycat
    tommycat Member Posts: 790 Member
    #16
    The news all of us
    The news all of us fear....................holding you very tight right now Pete.
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #17
    Sending good thoughts and

    Sending good thoughts and prayers your way...

    God bless you as well.

    Cyn
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    #18
    LivinginNH said:

    Sending good thoughts and

    Sending good thoughts and prayers your way...

    God bless you as well.

    Cyn

    Hang in there Pete.
    Good
    Hang in there Pete.
    Good that CT scan showed nothing. My last one showed small nodules on lungs so I'll be getting a PET scan also. (29th)
    Praying with you bud.
  • dmdwins
    dmdwins Member Posts: 454 Member
    #19
    Kenny H. said:

    Hang in there Pete.
    Good
    Hang in there Pete.
    Good that CT scan showed nothing. My last one showed small nodules on lungs so I'll be getting a PET scan also. (29th)
    Praying with you bud.

    Holdin out hope!
    Hi Pete,

    My case may be different from yours in the fact that CEA has never been a good indicator for me but I wanted to share this with you because that CEA can do quirky things.(and drive us crazy)

    Even though my CEA was normal at diagnosis of Stage 4 (3.9) my onc has always still tested it since I currently have no evidence of disease so we really have nothing else to go on but scans every 6 months. It has ranged from a low of 1.7(post chem) to the high at diagnosis of 3.9...until last December it was 6.0 (had it tested the day I came back from my visiting my very ill grandfather) ...of course I was a little freaked out to say the least....I had a CT ...nothing.....had a Pet ....nothing....I too thought where is it lurking...there was nothing else to do but wait and retest my CEA (though I think if I had really pushed my colorectal surgeon might have scoped me....my onc was NOT on board with that HAHA) so we waited and repeated...next time 4.1 ....next time 3.7 and I was not in any treatment. So I am holding out hope that your CEA is just doing a quirky thing!!

    Dawn
  • karen40
    karen40 Member Posts: 211 Member
    #20
    Sorry
    I'm so sorry to hear about the rise in your cea. I'm praying that it's nothing and that only happy rainbows come your way. Smile.
    Karen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #21
    Pete,
    Pete,
    Of course I am holding you in my prayers. We had a beautiful rainbow over the island this morning and I believe it is for you. Be strong my friend. Yes, the tool of meditation will be good in the scan.

    Aloha,
    Kathleen

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