[cancer] CEA levels are up, this is (probably) very bad news

Got this email from my oncologist yesterday, excerpted and edit slightly for clarity:

Your CEA is up slightly to 4.6. I think we should get a CT scan the week of Nov 19th to see what is going on.

This is not good news, and is probably very bad news.

For those who haven’t been following until recently, CEA is carcinoembryonic antigen. Per Wikipedia:

It is normally produced during fetal development, but the production of CEA stops before birth. It is not usually present in the blood of healthy adults, although levels are raised in heavy smokers. CEA is a glycosyl phosphatidyl inositol (GPI)-cell surface anchored glycoprotein whose specialized sialofucosylated glycoforms serve as functional colon carcinoma L-selectin and E-selectin ligands, which may be critical to the metastatic dissemination of colon carcinoma cells.

In other words, it’s a tumor marker associated with my kind of cancer, especially in its metastatic form.

CEAs can manifest for other reasons. Wiki mentions smoking. Severe bowel inflammation can also cause CEAs to be present.

In my case, while I certainly have bowel inflammation as a result of chemotherapy’s persistent ravaging of the cells lining my GI tract, my historical CEA levels over the past four years have not tracked with that problem. They have tracked inconsistently with the presence of tumor activity in my body. In brief, I’ve had low CEA levels during periods of tumor activity, but I’ve never had elevated CEA levels except during periods of tumor activity. That is to say, low CEAs are not an affirmative sign that I am cancer-free, but elevated CEAs are always associated with increased cancer activity.

Now, three rounds into my FOLFOX and Vectibix treatment, my CEAs are up to 4.6, about a 31% increase over the 3.5 measured last August when this metastatic presentation was first diagnosed. That would be what we in layman’s terms call a trend in the wrong direction.

CEA Levels as of 2012_11_08

The cut off for clinically significant CEAs is 3.1, anything below that is considered normal. For reference, my all time high CEA was 10.9, 5/21/2011 during the early phases of dealing with my liver metastasis. My low CEAs are 0.2 to 0.3 when there’s no tumor activity.

So, this likely doesn’t mean my cancer has gone into runaway train mode. What is does (probably) mean is that something is growing when it really, really shouldn’t be. My somewhat informed speculation as a long term cancer patient (over four and a half years with Stage IV colon cancer plus metastases) is that either the current multi-focal metastatic liver tumors (Bush, Cheney and Rumsfeld) are proving chemo-resistant and growing despite the current regimen, or that a new metastatic tumor or tumors have appeared elsewhere and are proving chemo-resistant.

Neither of these is a good thing, though I have no real notion which would be worse. “Worse” isn’t really a concept that applies in my world anymore. Everything’s bad, basically.

My special horror is that Rumsfeld, the tumor at the back of my liver adjacent to the peritoneum, has begun to interpenetrate the peritoneal wall, and that I now have peritoneal cancer as well. This is an issue I brought up with both my OHSU oncology team and my Johns Hopkins oncology team last summer, when I queried whether surgery could best come before chemo specifically to deal with that possibility, just in case this round of tumors proved chemo-resistant and continued to grow. All four oncologist I saw felt that chemo before surgery was a be a more responsible option.

If I was right, if this is peritoneal interpenetration generating the new spike in CEAs, I am going to have to ride myself my hard not to pitch a truly epic shit fit. It won’t do any good if I do, after all. And it’s not like anything in oncology can be stated with certainty. This is a medical specialty that relies almost entirely on statistical outcomes, and individual disease progression can only be observed in realtime, not forecast with sufficient accuracy.

My best guess now is that we’ll stop this chemo, have surgery in early to mid December, and pick up with the newly approved fourth chemo series, which is based around a drug known as Regorafenib. This would put me on chemo through June or July, most likely, and mean the past two months have been a waste of time.

My emotional landscape on this is complex but unsurprising. If we have to abandon Vectibix, that’s another year shaved off my already profoundly foreshortened life expectancy. If this is peritoneal disease (only one of a number of possibilities), it will not be the first time I’ve been right about something very important in which I was then overruled in by medical advice. No matter what it is, my fear and frustration and depression are all multiplied. I won’t know much about any of this until the CT scan results are interpreted and released to me, likely not for a week to a week and a half. Uncertainty, of course, is my greatest demon.

Whatever this means, I will adapt and adjust. I always do. But for now, I am very, very upset.

ETA: This post was written while still on the 5-FU pump in the current round of chemo. My apologies for the larger number of typos and misstatements than usual.

17 thoughts on “[cancer] CEA levels are up, this is (probably) very bad news

  1. --E says:

    Oh crap.
    As always, I’m hoping for the best. I admire your dignity and strength even through the depression and frustration.

  2. Damn it. Love to you, man.

  3. Sydney says:

    Hoping for the best of all possible outcomes.

  4. Harald Striepe says:

    First of all, I deeply feel for you.
    But I also think, you need to look at a way to deal with anger and depression, and move to more detachment and acceptance. Acceptance does not mean stopping the struggle, it means stopping the mental suffering. Consider meditation and mindfulness. Perhaps even review some of the basic buddhist philosophical concepts, but stripped of 2500 years of religious filigree added over the last 2500 years.

    1. Harald Striepe says:

      I wish, this comment section had the ability to edit, and would not display input in a tiny window. For some of us, the results can be embarrassing…

  5. alexis says:

    Sorry Jay.

  6. Cora says:

    Awfully sorry to hear this, Jay. Hugs and fuck cancer!

  7. MtnSk8tr says:

    I’m heartsick about this, Jay. Hugs to you and your family. Be sure to let me know if there’s anything I can do. ~S

  8. Ruthie says:

    I like your acerbic and irreverent posts. Someone has to be the anti-reverend. I’ll put you on our extreme unction healing prayer list. It’s a kind of magic. Hope you don’t mind. <3 *hugs*

  9. Stevie says:

    You need to engage your brain. At the moment you are feeling, not thinking, and the problem with that is that you are working yourself up into telling yourself that if you had had the surgery you wanted, when you wanted, you would be ok. That’s delusional.
    Surgeons like operating; that’s why they become surgeons. It’s what puts the spring in their step when they are walking into theatre, and why they get incredibly pissed off if they injure themselves snowboarding so they can’t operate. Surgeons do not become surgeons so that non-surgeons can tell them what to do, and they particularly do not become surgeons so that physicians can tell them what not to do.
    However much you want to believe otherwise, the reason the surgeons did not do what you wanted them to do is because it would very probably have killed you in the shorter term. You need to forget the stuff on Wiki about the marvellous regenerative power of the liver because Wiki isn’t about you.
    You need to recognise that fact; however much you want to believe that you understand all of this stuff the bottom line is that you have not spent a decade or two learning it.
    So get a grip; “I’m going to die and it’s all their fault” is not a good way of extending your life expectancy. In fact, it’s the reverse; you are coming perilously close to the emotional state of teenagers thinking about how sorry everybody will be for being unkind to them after they have killed themselves.
    And yes, I know you’ve got chemo fog which doesn’t help with the thinking bit but chemo fog isn’t a sufficient excuse for someone of your intelligence failing to engage your brain.
    It’s quite possible that you have other tumours; if the results come back and they are in places you haven’t even thought about are you going to be happy about it? I’m assuming that the answer to that question is no, in which case you would be in exactly the same position. You need to think because you will have decisions to make, and throwing hissy fits isn’t a substitute for thought.
    There is a wide spectrum between your current mindset and Candide; you might try moving a little way. Thus, however terrified you are, you know that a drug reliably knocks you out for ten hours or so. Instead of complaining about it you could consider what it would be like to be as afraid as you are with no way to turn it off. Who knows, you may even switch your mind back on in the process..

  10. Stevie says:

    I forgot to click the notify me of followup comments button when I posted the above.
    I should also add, speaking from experience, that you can lose a lot of lung and still survive.
    The NCI pages note that some individuals with metastasis to both liver and lung do survive provided the tumours are resectable. In the case of your liver your surgeons seem to have concluded that you lacked sufficient functional hepatic reserve for surgery of the type you wanted.
    The point of chemo is to shrink it so that your liver would have sufficient hepatic reserve to enable resection…

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