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High CEA levels

Ei Member Posts: 1
I want to move out of the zone where my CEA levels rise, scans are done, results coming in and the wait causes stress, which causes cancer, supposedly. It's a rut. It's like a bad job. Waiting for the news. I want to reduce doctor appointments to maximum of 2x/year. CEA goes up and down. We can't worry and ruminate every time the levels rise above 5. Then, what if the levels are way up but nothing shows up in the scans? Keep worrying? Stop worrying? What do others do?


  • PhillieG
    PhillieG Member Posts: 4,866
    Hi Ei,
    This is my opinion and my method for dealing with cancer. We all have our own ways of handling this.

    I've been living with stage IV colon cancer for over 7 years. Ever since I heard those words "you've got cancer" my life has been a series of what I call new normals. I had a 6 month new normal of just FOLFOX/Avastin, then surgery for a colon resection, liver resection, gall bladder removal, HAI pump installed, and a few lymph nodes removed. That gave me a new, new normal.

    Then I had 6 months of recovery, a bowel obstruction repair, some other cocktail that was given systemically along with the targeted chemo my HAI pump gave me. Another new normal.
    July of 2005 I started Erbitux with CPT11 that was followed by removal of some spots in my lungs via wedge resections. Then I seemed to have yearly lung wedge resections for the next 2 years while staying on Erbitux and CPT11 (three more new normals).

    Then things went to RFA (Radio Frequency Ablations) where they insert a needle into the small tumors and heat them until they are well done. Three of those in three years. A piece of cake as far as this stuff goes. The procedure done in the morning and home that night. Each time followed by Erbitux with CPT11 and yes, new normals. I had my last RFA done at the end of 2009 and I've been on Erbitux since then ranging from every 2 weeks with the CPT11 to the current Erbitux only every 3 weeks for the past 9+ months. So now this is normal.

    All of the time I've been having CT scans every three months along with my CEA being checked. It's up, it's down, it's the same. Scans show spots, small spots, big spots.
    See Spot run! Run Spot run!! Run the "F" out of my body ;-)

    I worry as little as I can. NOTHING is written in stone as far as this stuff goes. What works one time may not work another time. I was supposed to be in the hospital for 5-9 days the first time. I was there for 16 or 17. That was my first experience with "hey, this is going like they said!!!" Silly to think it would since we are all different. It was an eye-opener and gave me a new and I feel better attitude with it all. Things happen when they do and not before. I'm on chemo until I am no longer on chemo. I have procedures done when I need to have them done, and worrying about things does not do anything that is helpful for me. Do I get scanxiety during the week between scans and results? Yes, about 1-2 days before I get my results I get a little anxious but otherwise I try to keep it out my mind or at least way in the back of my mind. It's even behind "did I put out our recycling today?".

    I will never be what I was pre-cancer. I think I worried about stuff that had nothing to do with my health more then than I worry about cancer now. There is nothing at all that says I will die from cancer. Odds are probably as great that I could die just driving into NYC for my appointments than they are as dying from my cancer. I do consider myself VERY fortunate to have a very good medical team behind me as well as friends and family that are real supportive. I have a good wife and 2 great kids, food on the table, a place to live, and a warm place to go to the bathroom.

    For many, this would not suffice. Some people want nothing to do with cancer once it's gone. No reminders, no LIVESTRONG wristbands...nothing. I can understand why they might feel that way but cancer has not been all bad for me. While it hasn't been the best thing that ever happened to me it certainly could be a hell of a lot worse.
    As Alfred E. Neuman put it "What? Me worry?"

    That's what I do.
    I hope there's something in here that is helpful for you