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[cancer] Now the wheels of heaven stop (bad news, indeed) - Lakeshore
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Jay Lake
Date: 2013-01-05 05:08
Subject: [cancer] Now the wheels of heaven stop (bad news, indeed)
Security: Public
Tags:cancer, family, friends, health, personal
Thursday's MRI scan was ambiguous-to-good. The PET scan, not so much to the good. Rather nastily bad, actually. Which was quite surprising, as I'd started to feel pretty good about my progress through this chemo series. More fool me.

Here's the summary from the radiologists' report:
A single new mildly PET avid liver lesion is present. The previously seen liver lesions are not significantly changed.

What this means as a first order effect is that Rumsfeld (tumor #3) is not as gone as December's CT and this past Thursday's MRI had led us to believe. Also, more importantly, that a new tumor, Ashcroft (tumor #4), has appeared. My oncologist believes that there is some ambiguity on the PET about tumor #4, so it's slightly possible this is a false positive.

As for second order effects, I really don't know what this means yet. I'll be seeing my oncologist Monday morning, which meeting should give me some additional insight, but I believe they want to take this to the Tumor Board at my cancer center before giving me what passes for definitive answers in oncology. That is a medical specialty that runs on statistics and post hoc analysis, so definitive answers are notoriously thin on the ground.

Possibilities and questions include:

  • What does it mean for the chemo series if one tumor shrinks (Rumsfeld) and another grows (Ashcroft)? These are simultaneously the most positive and the most negative results we've ever seen from chemo for me. How can the chemo be both effective and ineffective at the same time?


  • Do we abandon this chemo sequence (FOLFOX with Vectibix) and start on the next (as-yet-unknown-to-me substrate with Stivarga)? Which would mean another six months of chemo going forward from here.


  • Now that we have four surgical targets in three disparate locations in my liver, is surgery still an option? (That's actually a question for my surgical oncologist, who I'm seeing in a week and a half.) Is it effective to do a resection and leave some diseased tissue in place? One of the issues here is that because I've had two prior liver resections, my liver is rather structurally compromised. My surgical oncologist has already expressed an opinion to me that he wants to be very conservative on this go round to avoid risk of surgically-induced liver failure. It's unclear to me how we reconcile this requirement for a conservative approach with the continued spread of my tumors.


  • How much closer does this move me to a terminal diagnosis?


It's hard to see how this isn't quite grim, unless there's some other way to interpret the PET results. I don't really know what to think yet. At the moment, I'm mostly very angry and confused, and also very concerned for the impact of this news on those around me whom I love.

More when I have it.

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cathshaffer
User: cathshaffer
Date: 2013-01-05 13:18 (UTC)
Subject: (no subject)
Gah. Urgh.
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a_cubed
User: a_cubed
Date: 2013-01-05 13:52 (UTC)
Subject: (no subject)
Ack. Hug!
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Beth
User: casacorona
Date: 2013-01-05 14:15 (UTC)
Subject: (no subject)
Jay. I am so sorry. I think you need to wait for the oncologist's interpretation before despairing.

But yeah, new tumor is very upsetting.
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joycemocha
User: joycemocha
Date: 2013-01-05 14:56 (UTC)
Subject: (no subject)
Crap. Hugs.
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Lioness
User: elisem
Date: 2013-01-05 15:01 (UTC)
Subject: (no subject)
Grr. A basket of hug-like things for you.
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beth_bernobich
User: beth_bernobich
Date: 2013-01-05 15:20 (UTC)
Subject: (no subject)
*offers hugs*
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MG Ellington
User: xjenavivex
Date: 2013-01-05 15:33 (UTC)
Subject: (no subject)
I am so sorry. How will they verify whether Ashcroft is a false positive and is this more definitive results about Rumsfeld's shrinkage rate than the last tests?
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Jay Lake
User: jaylake
Date: 2013-01-05 15:35 (UTC)
Subject: (no subject)
I frankly don't know. I'm not even sure how you'd get a false positive in this situation. What I do know is that my oncologist is uncertain.
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MG Ellington
User: xjenavivex
Date: 2013-01-05 15:40 (UTC)
Subject: (no subject)
::hugs:: Can you manage the fear until you have more certainties or is worst-case kicking your butt?
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Jay Lake
User: jaylake
Date: 2013-01-05 15:43 (UTC)
Subject: (no subject)
I'll cope. I always do.
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fjm
User: fjm
Date: 2013-01-05 15:53 (UTC)
Subject: (no subject)
HUgs.
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threeoutside
User: threeoutside
Date: 2013-01-05 15:56 (UTC)
Subject: (no subject)
*hugs* dood. Sorry for this alarming news.

The worst days of my life don't hold a candle to yours, but I got through them by focusing intensely on One Minute at a Time. I even use that in the dentist's chair. But of course, mine are trivial and short-duration scary times. I wish there was some way all your friends could collect health coupons and lay 'em on ya. But all I can do is say, again, I'm thinking about you every day. Oh heck here, have some more *hugs* too.
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fledgist
User: fledgist
Date: 2013-01-05 16:01 (UTC)
Subject: (no subject)
Oh boy. Hugs.
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Debbie N.
User: wild_irises
Date: 2013-01-05 16:21 (UTC)
Subject: (no subject)
*sigh*
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daveraines
User: daveraines
Date: 2013-01-05 16:57 (UTC)
Subject: (no subject)
I'm sorry, Jay.
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alumiere
User: alumiere
Date: 2013-01-05 18:22 (UTC)
Subject: (no subject)
I'm sorry to see this. Wish there were something other than online support I could offer.
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We're flat broke, but hey - we do it in style....: Fuck Cancer
User: kshandra
Date: 2013-01-05 18:35 (UTC)
Subject: (no subject)
Keyword:Fuck Cancer
*is reading and hoping*
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melissajm
User: melissajm
Date: 2013-01-05 19:29 (UTC)
Subject: (no subject)
Oh no. I'm so sorry.
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chris_gerrib
User: chris_gerrib
Date: 2013-01-05 21:35 (UTC)
Subject: (no subject)
There are times your medical posts remind me of the old He Haw song about "if it weren't for bad luck he'd have no luck at all."

I wish I could do more than direct good thoughts your way.
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Leela
User: leela_cat
Date: 2013-01-05 21:57 (UTC)
Subject: (no subject)
Damn it.

I've got no words for you, just *hugs* and *love*
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mmegaera
User: mmegaera
Date: 2013-01-05 22:19 (UTC)
Subject: (no subject)
Health coupons. Yes. Now that's what I'd like to see you receive. A few decades' worth, and given the number of friends and family you have, well, I suspect you'd have enough to share.

Good thoughts seem so -- inadequate in comparison. But they're what I've got and I'm sending 'em.
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anghara
User: anghara
Date: 2013-01-05 22:30 (UTC)
Subject: (no subject)
oh, Jay, Jay, Jay, DAMMITALL.
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Rhonda Parrish
User: rhondaparrish
Date: 2013-01-05 23:25 (UTC)
Subject: (no subject)
Keeping you in my thoughts.
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dinogrl: heart balloon
User: dinogrl
Date: 2013-01-06 00:23 (UTC)
Subject: (no subject)
Keyword:heart balloon
Words fail me.
All I can send is LOVE.
F***, F***, F***, F***, F*** Cancer!

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Lethran: Derringer
User: gwyd
Date: 2013-01-06 09:23 (UTC)
Subject: (no subject)
Keyword:Derringer
I was just thinking about you today.

I am terribly sorry about Ashcroft. I very much hope it's a false posative.
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Msconduct
User: msconduct
Date: 2013-01-06 11:51 (UTC)
Subject: (no subject)
Well, this sucks. However, although I'm sure your grasp of the implications of PET scans is better than mine, since my understanding is that they have a high false positive rate and given that your oncologist thinks there may be some ambiguity there too, I will remain cautiously optimistic until further notice that it's a false hit.
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farmgirl1146
User: farmgirl1146
Date: 2013-01-06 18:20 (UTC)
Subject: (no subject)
I am devastated to read this. I have the greatest admiration for you and your courage. If not, I wouldn't say this: "Desperate time call for desperate measures."

Make of it what you will, for you know the situation and I don't. Perhaps it is time for another opinion. If you haven't already, you could look up Dr. Timothy Mate, http://www.swedish.org/Physicians/Timothy-Mate#axzz2HDk0jbQs
I'm told his is amazing. We went to HS together.

Of course, I send hugs and love.
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cathschaffstump
User: cathschaffstump
Date: 2013-01-06 20:40 (UTC)
Subject: (no subject)
There's really nothing good to say here.

We await your news.

And if you want to freak out, you just go right ahead. Stoicism is overrated.
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