Totally Down in the Dumps!

edited March 2014 in Colorectal Cancer #1
I've had a few lousy days lately and haven't posted much simply cause I can't seem to stop crying...most be having more and more of these menopausal moments LOL.

Most of you know I've been so worried about Bert's diarrhea coming back as a result of more chemo to treat state III diagnosis in July 2003. So far, so good with that but I get home from work yesterday and hubby tells me that new onc's (I'll still call Dr. Lenz new onc for now as we've only been with him for a short period of time) office called to let him know that CEA test done 1/8/04 came back elevated and they want him back for a cat scan Tuesday. Mind you, he just, I mean just completed treatment of 5fu/leuc for stage III, with last six sets at reduced dosage from original dosage because of the severe, severe, diarrhea problems he was having. Anyway, last treatment was December 18...CEA was taken at old onc's office and it had gone from .9 in November to 2.0 on December 18. Now it's up to 7.7!!!! I contacted onc's office today and he got back to me right away. I asked him flat out his gut...he answered flat out that it could very well be a potential cancer recurrence and that it is very serious (AFTER 3 WEEKS OFF CHEMO...IF NOT ALREADY SOONER WHILE ON REDUCED DOSE). Bert is to come in for CT Scan and if no cancer is found, PET scan will be done as onc feels there is tumor growing and a plan needs to be in place!!!!

I'm shocked, depressed, devestated, and keep smiling through it all giving Bert prep talks. Outwardly, he's fine.....and I'll leave that as it is. Funny how things work, isn't it. I was so scared that the diarrhea would come back and plaque him and what MAY have come back COULD be much worse than diarrhea ever was. Gosh, I feel so bad and hurt so much for Bert, for my mom, for everone on this board and yes, a little for me too. I wash waiting for the shoe to why did it have to be a boot! (LOL)

Down and definitely in the dumbs in L.A.



  • Pewter
    Pewter Member Posts: 24
    The rise in CEA is worrisome, and I will certainly pray for the best and hope Bert's CT scan reveals nothing. Will they also be doing a PET scan?

    My CEA was normal after surgery (2.0), it went up to 7 during my chemo with 5F/U, and never really came back to normal, so I get very nervous about CEA levels, though all scans have been clear. My onc cautiously says that sometimes "this happens".

    I know you will keep us updated.
  • pjenks57
    pjenks57 Member Posts: 112
    I never know exactly what to say but always want to reply. All I can say is keep the positive attitude and pray with all your might. We will pray for you and Bert too. You have a right to be afraid but please hang in there. You have friends and folks praying for you and Bert. All will be fine. This will all pass (even menopause, I hope since I too am dealing with that and hubby;s cancer and heart problems.) You will prevail.
    Hugs and friendship.
  • andreae
    andreae Member Posts: 236
    Dear Monika,

    Hi sweetheart. I'm so sorry about the news... I know rise in CEA levels can be worrisome. However, I do have a friend that was diagnosed years ago with two seperate cancers that were both advanced (one being colorectal and one being stomach). He underwent treatment and was given 3% chance of survival. Almost every single time he went to the doctors his CEA levels had skyrocketed to 7-8. And every single time he underwent numerous tests... And every single time everything came back negative... He is alive, healthy and thriving today - and just graduated the five year mark this summer. I don't mean to give you false hope or shrug off your fear - cancer, CEA, metastases - this is all terrifying stuff. But try to hang on, take it one day at a time and remember that we are all thinking of you and Bert. Also, keep in mind that CEA levels are really known to be sketchy predictors at best. All our fingers are crossed and keep us posted.

  • spongebob
    spongebob Member Posts: 2,565 Member
    Ahoy, Moloka & Bert -

    The CEA test is so prone to different results. I recently asked my doctor at the Coast Guard clinic to pull a CEA on me and he balked. He related a story about how different labs can come up with wildly different results and gave me an example of how he pulled two CEAs on one patient the same day and sent them to different labs and came back with two very different results. He strongly suggested I get the CEA pulled at Bethesda wher I get it done all the time (read as: another trip around the Beltway in DC traffic)

    I know you guys recently changed providers; you probably also changed labs at the same time. Hang in there and don't let the CEA results get you freaked out. Rely on the CT scan - and even then look for a second opinion if those results come back hot - I saw something on TV just yesterday about a lung cancer patient who was dx-ed with mets, when, in fact, she just had the flu.

    Medicine is an imperfect science so don't go gettin' all gloom and doom on me here! Keep us posted, and I'll say a little prayer for you (did you just hear Dionne Warwick?) anyway.

    Best regards

    - SB
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    Hi Monika...

    I don't blame you for feeling overwhelmed (TO SAY THE ABSOLUTE LEAST!!!!!). And I'm sure Bert is feeling kinda cheated as he's trying to "play by the rules" and take his chemo like a man, and still can't get a break. I will only echo what everyone else has stated (so well, might I add!)...

    (1) Still try to maintain that optimistic "half-full" rather than "half-empty" attitude. Throwing in the towel certainly won't help, and may even hurt...

    (2) CEA levels aren't the best measure of anything. Think of it as just a number...obviously look into things if that number spirals out of control, but don't think of it as the sole indicator of anything.

    (3) Pray, pray, and then maybe just pray a little more! Regardless of your religion, it's a spiritual thing...use it to keep you strong!

    All the best...and then some more!

  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    I feel very blessed after reading this that my tumor did not give off markers so I never go through the CEA nightmare.

    Secondly, there are actions you can take on your end to work on Bert's recovery. These are my opinions (and you ALL know I got 'em!!) :-) but I would go out and get Bert a juicer and start jucing him fresh veggies and adding a Barley Green Powder (I prefer "Perfect Food) (

    Get the book "Beating Cancer With Nutrition" by Dr. Patrick Quillin.

    I am a person who needs to take action during a challenge so this is what I would do. It's a wonderful way to help your honey.

    Just a thought. And we all go through those days of sagging spirits. I surely had my crying moments....hours....days....


    peace, emily who is the juicing broken record!
  • jsabol
    jsabol Member Posts: 1,145 Member
    Dear Monika,
    I'm sorry to hear about this latest scare for you. From what others have posted, it sure seems that CEA's are difficult to interpret at best. Hang in there; I hope you have someone nearby who can give you a hug; you are being so brave for Bert; I know you will find a way to continue to manage. Keep us all posted and good luck with the scan. Judy