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Lakeshore - [cancer] Surgery outcomes, the simple (and lucid) version
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Jay Lake
Date: 2013-01-27 08:34
Subject: [cancer] Surgery outcomes, the simple (and lucid) version
Security: Public
Tags:cancer, health, personal
This is a slightly more lucid (I hope) recap of my last blog post, with a few more thoughts added.

Surgery went well from a procedural perspective. There have been no complications, post-operative healing has gone well, the incision is looking good without inflammation, bleeding and drainage. As my surgical oncologist has said, I tolerate surgery well.

The bad surprise was the discovery of unexpected tumors outside the liver. My surgical oncologist's initial comment to me on that was, "What we're supposed to do when we open you up and find unexpected tumors is just close you back up. I knew that wasn't the right answer for you."

I still have not seen either the surgical report or the pathology report, so this is not full and final data, but my current understanding is that there were four small tumors in my lesser omentum and one in my thoracic diaphragm, which was more or less interpenetrated with my liver via a bridge of adhered scar tissue.

All tumors were resected or ablated, and I am currently in No Evidence of Disease status. This is not a remission or cure, this just means there are no detectable tumors at this time. Considering the fact that the omentum tumors were not detected prior to surgery, this is not exactly confidence inspiring.

I'll be making a longer, more complex blog post about what this all means for my health, my likely paths forward, and what happens next. Essentially, things have gotten more urgent and dire than they were looking pre-operatively with the Ashcroft tumor question. Also, the overage on the fundraiser is going straight to the additional testing and consultations which are being sparked by these new findings.

So, yeah, not so good. The good news is they got everything they found. The bad news is there were tumors to be found outside my liver. I have now experienced metastases in four locations outside my original colon presentation. I have now experienced multiple metastases in various sites. I have now experienced metastases that apparently presented while I was under chemotherapy. Like I said, not so good.

I won't be seeing my medical oncologist until probably next week, as they are awaiting the surgical report and the pathology reports, as well as the meeting of the Tumor Board, which happens on Thursdays. Plus we're waiting for the tumor gene sequencing results, which even on a rush basis will be another two weeks or so.

More to come, once I have a bit more mental clarity to discuss. Meanwhile, I am expecting to be discharged from the hospital today. Pain is controlled and my body is functioning reasonably well.

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fjm
User: fjm
Date: 2013-01-27 16:52 (UTC)
Subject: (no subject)
It's bloody determined. Not sure what to say but sending you love.
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alumiere
User: alumiere
Date: 2013-01-27 17:24 (UTC)
Subject: (no subject)
I wish this weren't "not so good", and hope the tests show something that has a better chance of helping. I'm 'listening' but often have no idea what to say. But I am thinking of you.
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zyzyly
User: zyzyly
Date: 2013-01-27 17:48 (UTC)
Subject: (no subject)
I think the comment that your surgical oncologist made: "What we're supposed to do..." kind of sums up your courage in facing this.

It really sucks that you keep having to go through it.

My thoughts are with you.
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barbarienne
User: barbarienne
Date: 2013-01-27 17:53 (UTC)
Subject: (no subject)
I think your cancer must share some traits with you. It, too, produces in Lake Units.

(Yes, I am here for all your moribund humor needs.)

Continuing to hope that the genome sequencing will reveal something useful.
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Keikaimalu
User: keikaimalu
Date: 2013-01-27 18:21 (UTC)
Subject: (no subject)
Cancer is a vicious bastard.

But -- why are surgeons supposed to close you up when they find unexpected tumors, instead of removing/addressing them, as they did? I'm puzzled.

Much, much luck to you, Jay.
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Jay Lake
User: jaylake
Date: 2013-01-27 22:46 (UTC)
Subject: (no subject)
I think it's because the assumption is that if there's additional undetected metastasis which wasn't accounted for in the surgical plan, disturbing those met tumors without sufficient knowledge of their extent could cause more harm than good.
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joycemocha
User: joycemocha
Date: 2013-01-27 19:05 (UTC)
Subject: (no subject)
This sucks. Hopefully there will be further enlightenment from the tumor gene sequencing, and it's just a matter of Not Quite The Right Drugs For What It Really Is, and it turns out to be something that can be knocked down easily with the right drugs.

But yeah. Gotta agree--not so good.

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Diana Pharaoh Francis
User: difrancis
Date: 2013-01-27 19:18 (UTC)
Subject: (no subject)
Why is it that they are supposed to close you up if they find more? Doesn't it help to remove the tumors that they can find? I mean, in terms of managing the disease (if cancer can be managed), wouldn't it help?

I have a feeling I'm missing something here.
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Jay Lake
User: jaylake
Date: 2013-01-27 22:46 (UTC)
Subject: (no subject)
I think it's because the assumption is that if there's additional undetected metastasis which wasn't accounted for in the surgical plan, disturbing those met tumors without sufficient knowledge of their extent could cause more harm than good.
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martianmooncrab
User: martianmooncrab
Date: 2013-01-27 21:24 (UTC)
Subject: (no subject)
awaiting the surgical report and the pathology reports,

fingers, claws and tentacles crossed in that they will have some very solid information from pathology.

I say we name the new infestation of tumors Haliburton, because of their modus operandi.
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Lethran: Angel
User: gwyd
Date: 2013-01-28 04:21 (UTC)
Subject: (no subject)
Keyword:Angel
I have nothing clever to say. Ouch.
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Jenny Rae Rappaport
User: eiriene
Date: 2013-01-28 07:17 (UTC)
Subject: (no subject)
A somewhat naive question:

Because you keep having metastases in locations not expected, is this indicative that your cancer is not colon cancer? Can the weird locations of the metastases be a clue? I know the genome sequencing will help, but this seems awfully aggressive. =(
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Jay Lake
User: jaylake
Date: 2013-01-28 13:51 (UTC)
Subject: (no subject)
Well, sort of. And the question isn't naive. The problem, fundamentally, is that I've about outlived the clinical data. Most people with my cancer are either cured or dead after five years. So it's hard to tell what's going on. Is this weird or normal? We're really hoping for some good clues from the genomic testing.
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torreybird
User: torreybird
Date: 2013-01-28 16:01 (UTC)
Subject: (no subject)
"Neither cured nor dead" seems to be your inverse Scylla and Charybdis.

I'm hoping for your successful navigation of this wretchedly ambiguous path. Best wishes.
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