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[cancer] A bit more on me and CEA levels - Lakeshore — LiveJournal
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Jay Lake
Date: 2013-04-11 05:11
Subject: [cancer] A bit more on me and CEA levels
Security: Public
Tags:cancer, health, personal
I was asked several times yesterday about how my current CEA levels compare to my historic levels. I think this question had two intents, depending on the asker. One intent was trying to understand my very gloomy assessment of this week's test results in my own historical context. The other intent was in reference to the fact that elevated CEA levels are not considered affirmatively diagnostic of metastatic colon cancer. While normally healthy adults have little to no measurable CEA level, there are causes other than cancer, including heavy smoking or various forms of bowel inflammation. I've never been a smoker in my life, but bowel inflammation is a regular feature of my lower GI tract.

Except in my case, without exception, I have always and only experienced elevated CEA levels when tumor activity was present. Specifically in my liver. See this chart of my lifetime CEA levels.

Jay Lake CEA Levels over Lifetime (annotated)
  1. Initial colon cancer presentation

  2. First metastatic presentation, a single-focus, single-site tumor in my left lung

  3. Second metastatic presentation, a single-focus, single-site tumor in my liver

  4. Third metastatic presentation, single-focus, multi-site tumors in my liver

  5. Fourth metastatic presentation, addition tumor in my liver while on pre-operative chemotherapy for third presentation

  6. Fifth metastatic presentation, multi-focus, multi-site tumors in my diaphragm and omentum

  7. Current state of elevated CEA levels, but no diagnostic medical imaging yet

When I first presented with my primary colon cancer in April of 2008, my CEA levels were 0.2 to 0.3. When I presented with the metastatic tumor in my left lung in April of 2009, my CEA levels were 0.7. But when I started presenting liver metastases, they shot up. Every time I've presented a liver metastasis, my CEA levels have been elevated. Right now they are higher than they were last summer when I had three metastatic tumors in my liver growing with a four-week doubling rate.

In other words, while checking my CEA levels can produce a false negative, i.e., low CEA levels while I have an active tumor, it has not ever produced a false positive, i.e., elevated CEA levels with no corresponding active tumor.

Hence my deep sense of dread now. Despite years of dealing with this, despite gaining a lot of ground with acceptance in my own begrudging way, despite knowing the implications of the January findings and being formally classed as incurable, this is still a horrifying shock.

I have a number of thoughts about treatment paths, lifestyle issues and mortality, but they're all essentially speculative until we do the CT on May 7th, and I see my oncologist again on May 8th. I'll probably share them here in the near future, with the caveat that I'm projecting from insufficient (but not inconclusive) data rather than reacting to a formal clinical diagnosis and treatment plan.

Post A Comment | 9 Comments | | Link

User: Jeff P
Date: 2013-04-11 12:39 (UTC)
Subject: (no subject)

There's no way through a mere blog post I can truly know what you're experiencing and feeling. That said, your posts here present you as being far more calm, thoughtful and clear than anyone I know would be in a similar situation.

Your sharing of this experience is helpful to some of us. Thank you for being present enough to share it.
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User: cathshaffer
Date: 2013-04-11 14:34 (UTC)
Subject: (no subject)
I'm very sorry to hear that your CEA levels are headed in the wrong direction, Jay. And I'm sorry you have to wait until May 7 for any further information. That seems unacceptably long.
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Jay Lake
User: jaylake
Date: 2013-04-11 14:37 (UTC)
The wait has to do with the minimum interval between CT scans, FYI.
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User: cathshaffer
Date: 2013-04-11 14:48 (UTC)
Subject: Re:
Ah, shoot. Maybe they should have held off on the CEA testing, then, until a scan was possible. Nothing would have been different, unless your doc is thinking of discontinuing or changing chemo on the basis of CEA alone, which seems unlikely. Anyway, you have all of my sympathies and support waiting for the next round of news.
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User: a_cubed
Date: 2013-04-11 13:31 (UTC)
Subject: (no subject)
I'm almost in tears at this. As you say, the prognosis from January is consistent with how further metastases soon and quickly, but just how soon and how quickly things are now looking is deeply horrifying. Sob!
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User: keikaimalu
Date: 2013-04-11 14:28 (UTC)
Subject: (no subject)
I'm so sorry, Jay.
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User: joycemocha
Date: 2013-04-11 15:07 (UTC)
Subject: (no subject)
I don't have words.

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Renegade Vagabond: Long Hair
User: khaybee
Date: 2013-04-11 20:21 (UTC)
Subject: (no subject)
Keyword:Long Hair
You are my sunshine. Love.
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Matthew S. Rotundo: Radioactive
User: matthewsrotundo
Date: 2013-04-12 13:10 (UTC)
Subject: (no subject)
Yeah. Fucking hell.
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