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Jay Lake
Date: 2009-05-22 13:02
Subject: [cancer] By circuitous paths information accrues, being an update
Security: Public
Tags:calendula, california, cancer, travel, weird
[cancer] Treatment plans are a winding road

Yesterday I received an email from my cancer doc. He said that the tumor board had met, and recommended that we wait 2-3 months and reimage my liver, rather than proceeding with any treatments at the present time.

This rather upset me, to say the least. I'm willing to go to great lengths to deal with this, but doing nothing doesn't sound like "dealing with". I spent some time last worrying, and trying to frame a response that didn't sound either panicked or surly.

This morning, while walking through the United concourse at SFO on my arrival here, I ran into my doctor, in transit with his wife on their way to a vacation. (Which, if I wrote that into a book, no one would believe me and casacorona would make me take it out.) I mean, what are the odds? This day of all days, with me wrapped around the axle about something very important he had just told me, I should run into him in a city neither one of us lives in. Weird, in a very funny way. The funniest thing was that when he saw me, he just started talking. No "OMG, what are you doing here!" stuff. It was as if I'd walked in for an appointment.

He and I talked for about 15 minutes, having a medical consult right in the middle of the concourse.

The tumor board's perspective was that these liver masses had been detected "too early", and that there was insufficient clinical data on how to proceed with such an early situation. Waiting 2-3 months and reimaging would provide more clinical data, allow better categorization and enable a more precise treatment plan. The analogy they used was, well, this was detected by accident, let's wait until the normal threshold of detection and proceed from there according to established clinical best practices.

I pointed out that my colon cancer had been detected early, and by accident, and this logic was not comforting to me. I also said that since my colon seemed to be acting more aggressively than we expected, I was especially uncomfortable leaving the liver masses in place to grow.

My doctor responded that one of the problems right now, absent good clinical data for too-early detection, was the possibility of an erroneous treatment choice. If we elected for surgery, and later determined that chemo was more appropriate, chemo would have to wait about two months for surgical recovery. If we elected for chemo, and determined later that surgery was more appropriate, surgery might be delayed for up to six months depending on the chemo course.

I follow his logic, but the conclusions make me very uncomfortable. My doc did say that the door was not closed to more aggressive treatment plans, but any further action would be at my insistence. We agreed to meet on this at my post-colonscopy consult.

Here are the steps I am taking:

  • Have requested the double length appointment.

  • I will be meeting with a professional contact of calendula_witch's who has survived this same set of cancers. Seeking his take on the situation as a whole, and specifically on the proposed treatment plan.

  • Have called the insurance company to confirm that I'm covered to seek a second opinion with a different cancer treatment center, and that I don't need any special permission or preapproval. They have confirmed this, and also suggested I talk to their cancer treatment group.

  • Have called the cancer treatment group, expecting a call back next week. They have more cancer centers "in network" than the general plan, and will offer me possible referrals.

  • I am considering the Hutchinson Cancer Center in Seattle and the UCSF Center at the Mt Zion unit in San Francisco. Hutch is not "in network' on my plan, UCSF is; but Hutch may be "in network" for the cancer treatment group.

Mostly now I'm trying to wrap my head around the idea that a disease where every chance of success is based in part on early detection and treatment is now being treated with a "wait and see" attitude. This makes me very emotionally and mentally uncomfortable, even if it is a clinical best practice.

More as it develops. And, erm, hooray for the mighty power of coincidence. I'm going into this weekend a lot less uptight than I otherwise would have been, for the sheer improbably happenstance of crossing paths with my doctor today.

Originally published at jlake.com.

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Karen, aka Ana Lake, ska Aine inghean Cathal
User: summers_place
Date: 2009-05-22 21:09 (UTC)
Subject: (no subject)

And hang in there!
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User: martianmooncrab
Date: 2009-05-22 21:14 (UTC)
Subject: (no subject)
my friend MonkeyBoy got his cancer treatment in Seattle and he lived, and he had a very rare form of sarcoma. He did surgery and then very aggressive chemo.
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Rose Fox
User: rosefox
Date: 2009-05-22 21:41 (UTC)
Subject: (no subject)
FWIW, this is actually a big problem in medicine right now, because once imaging technology improves to a certain milestone point, it then takes five to ten years to gather enough treatment success/failure data to make backed-up claims about the right thing to do with the information you get with the imaging. By then the technology has improved, lather rinse repeat. You're simply always going to get last decade's best practices with the imaging data of today, and sometimes last decade's best practices have no idea what to do with the imaging data of today. I definitely sympathize with how frustrating that is, not least because I've heard a lot of doctors talk about how much it frustrates them and their patients. On the other hand, I've also seen an increasing number of articles that say things like "Are we performing too many surgeries on people just because their problems look scary on our super-sensitive imaging equipment?". So I'd be a lot more worried if your doctors were all "operate now, quick!" because then you might end up missing a chunk of liver that could have been saved if you'd been more patient.

Definitely do get a second opinion, because there's never anything wrong with that, but don't be surprised if they tell you the same thing. If you're really concerned about rapid advancement, maybe re-image after one month instead of waiting two to three, but if there's no good way to interpret the imaging data you have, then there's no good way to interpret the imaging data you have.

Here's a different metaphor: you're in the military and have sophisticated long-range scanners that can identify a massing of life forms a great distance away. The scanners report 10,000 life forms in what appears to be an attack formation, heading toward you. What they can't tell you is whether that's 10,000 foot soldiers or 5,000 mounted cavalry (with each horse counting as a life form, after all). It also can't tell you how fast they're moving or how they're armed or armored. Ten years from now, someone might be able to interpret the scanner data to distinguish people from horses, but that doesn't help you at the moment. However, in a couple of time units, they'll be close enough to make out more detail, at which point you can make a good defense plan that takes all that detail into account. Until then, you can nuke the site from orbit, which will kill them all but screw your own ecosystem... or you can wait.

I'm sorry this is so hard and scary. Hang in there.
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Jay Lake
User: jaylake
Date: 2009-05-22 23:35 (UTC)
Subject: (no subject)
Thank you. Both calendula_witch and I found this extremely helpful.

:: hugs ::
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Rose Fox
User: rosefox
Date: 2009-05-23 02:54 (UTC)
Subject: (no subject)
Glad I could help some. My best to you and all your loved ones, and if there's anything else I can do, please don't hesitate to let me know.
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User: mevennen
Date: 2009-05-23 14:33 (UTC)
Subject: (no subject)
I am not qualified to say whether it is a good idea to wait or not, but T had a wait between diagnosis and the start of treatment of several weeks and in ways it was the toughest bit: like a phoney war. I'd suggest a second opinion but this may just be how treatment is organised these days. Hang in there.
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frabjouslinz: Me Street
User: frabjouslinz
Date: 2009-05-22 21:52 (UTC)
Subject: (no subject)
Keyword:Me Street
I would be frustrated, too. But yay for random happenstance. If you do end up coming up here to check things out and need somewhere to stay, you're welcome at our place.
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User: jackwilliambell
Date: 2009-05-22 21:59 (UTC)
Subject: (no subject)
"I wrote that into a book, no one would believe me"

However, if you had written in a book that you met your doctor in the described circumstance, had the consult, felt better, and *then* received a phone call from said doctor who was in Portland and had *never* left it (but had the same information to impart). Well, I'm betting that would work just fine...
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User: yourbob
Date: 2009-05-22 22:11 (UTC)
Subject: (no subject)
I'm with everyone else, including and especially JackWB.

My dad that died about six months ago from cancer (lung) had a similar problem. It had NO bearing on his eventual death!!! But - they had the problem that they detected it starting with "a little blood in the wrong place" (a phrase you may recall from last year), though his was at the other end.

They went in and did stuff, trying to do a biopsy, but there weren't actually enough cancerous cells do do anything with. They thought they might have actually gotten it all with the biopsy.

Then it took several months for it to come back to a point they could really look at it and begin treatment. He did have several extra months of The Fear, but he did have time to think about it and managed his first trip to Europe (with a granddaughter) and other things like that in that time.

I know this story doesn't have a happy, really, ending. But you're not a life-long heavy smoking nuclear veteran with emphysema, who's the last one in your brigade to be alive 'cause all the rest got some other form of cancer years, and in some cases decades, earlier.
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User: suelder
Date: 2009-05-22 22:21 (UTC)
Subject: (no subject)
about coincidence:

For years, we couldn't go on a family vacation without meeting someone we knew - at some point. We went to SeaWorld in Florida - my mom met someone she grew up with in Maryland. My sister and I went to Bermuda on a college trip -- the drum major from our band was on her honeymoon.

I went to a wedding and got re-routed to Chicago's O'Hare, and saw someone I used to work with waiting for his wife outside the ladies room. And one time, my parents were in the airport at San Juan Puerto Rico and somebody said, "Didn't you used to be [insert mother's maiden name]?"

It was my mother's first cousin on *her* mother's side, whom she hadn't seen in 20 years.

I was in a car accident that broke my hip and both legs and burst an ovarian cyst I hadn't known about. The cancer board called it "borderline with malignant potential". Without that horrific car accident, I probably would have died from ovarian cancer - I'm starting to believe that there are no coincidences.

Hang in there. We're pulling for you.

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User: lauriemann
Date: 2009-05-22 22:25 (UTC)
Subject: (no subject)
Is part of the problem that the small mass in your liver is too small to biopsy?

I agree with everyone else - get a second opinion.
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User: fledgist
Date: 2009-05-22 22:59 (UTC)
Subject: (no subject)
I'd go with getting a second opinion.

The coincidence has to go into the "truth is stranger than fiction" column. Or, in the alternative, "the world is just too bloody small" column.
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scarlettina: Hug 2
User: scarlettina
Date: 2009-05-22 23:33 (UTC)
Subject: (no subject)
Keyword:Hug 2
What they said. I'm here if you need me.
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miki garrison: texas giant chicken round-up
User: mikigarrison
Date: 2009-05-22 23:34 (UTC)
Subject: (no subject)
Keyword:texas giant chicken round-up
I'd be freaked out by the "wait and see", too. I know there are times when it is definitely the best clinical choice (albeit scary as hell), but I'd be wanting to hear that from more than one unrelated specialist, so I think going after a second opinion makes sense. Even if you have total faith in your doc and team, it can be a good idea sometimes to make sure that other experts would choose the same path.

If you come up to the Hutch, I definitely have a spare bedroom and sofas at the disposal of you, Shannon, and anyone else along for the ride.

I'm really sorry you don't have a clearer set of answers right now -- I know what can do to the Fear.

And on the coincidence note -- I have run into some of my doctors in the strangest places, including dressing rooms. A good chunk of them make brief eye contact and then send strong body language signals that they would rather not communicate in that setting. And others feel totally comfortable hitting straight into the meat if it makes sense.

Anyways, *hugs*, and let me know if there's anything I can do.
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The Green Knight: Hug
User: green_knight
Date: 2009-05-22 23:48 (UTC)
Subject: (no subject)
Small consolation, and it sucks, but you're at the edge of research (and I'd go with the monthly reimages rather than the 2-3 months one) - your case will help doctors to read the unspecified images because once they know what they develop into they will be able to reccommend treatment earlier, and pick the right treatment rather than one that will - potentially - cut you off from your best chance for months and thus, paradoxically, make matters worse.

And while it might feel that you're doing nothing, you're preparing for treatment, either way, so you can pick optimum conditions - which will help you to recover faster.

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User: farmgirl1146
Date: 2009-05-23 00:47 (UTC)
Subject: (no subject)
Otherwise, Hugs, and call if you need to blow off steam. I'm in the SFWA directory, and the cell phone number in there for FaceBook friends.

Edited at 2009-05-23 12:48 am (UTC)
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Amy Sisson
User: amysisson
Date: 2009-05-23 01:03 (UTC)
Subject: (no subject)
Good for you, Jay. I am no expert, but it seems to me you're doing exactly the right thing.
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User: dinogrl
Date: 2009-05-23 01:23 (UTC)
Subject: (no subject)
Firm believer in no coincidences. Really.
I also go with second opinion. Hutch is world class. We'll speak
more on this soon.
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User: jaborwhalky
Date: 2009-05-23 02:37 (UTC)
Subject: (no subject)
I say do not let it sit for 3 months.
Go do the other DR stuff I think sitting around for that time could be very very very very bad.
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User: joycemocha
Date: 2009-05-23 03:03 (UTC)
Subject: (no subject)
FWIW, a friend who is a cancer doctor in Boston has made similar comments as your doctor when we've been talking online about cancer.

I'd go with the one month imaging stuff, myself. One of the factors that my doctor friend mentions constantly is that sometimes if you go for it too early, you think you've got it beat when you really don't.
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User: joycemocha
Date: 2009-05-23 03:19 (UTC)
Subject: (no subject)
Hey Jay-- was talking to someone here at Miscon and remembered Curtis Salgado. I think he went to Mayo for his cancer. You might want to see if you can find out what he did/who he saw.
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User: (Anonymous)
Date: 2009-05-23 05:00 (UTC)
Subject: (no subject)
Jay, hugs. It's a puzzlement. As someone else already said, better imaging is in some cases outrunning treatment experience for what to do with really really early detection results. Wait and see would make me twitch too. Hugely.

I think I would probably be, based on both 1st & 2nd opinions, leaning in the direction of ~someone~ has to be treated this early to gain experience with what treatments are best.

But I'm 14 years past clear cell ovarian cancer found purely by accident. If I'd opted for wait and see with my ovarian cyst, I'd be dead now.

My mother's first breast cancer was caught at an extrmely early stage. No lump that anyone could feel. Nothing visable on the mamagram. But there was this dimple that wasn't there before. Her doctor suggested let's wait and see. She opted for surgery instead. So her breast cancer was caught at a really really early stage. Dunno if that's why she's still alive 32 years later. She's survived three recurances that were all found at a later stage. So it truly is a puzzlement what's best.

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User: kzmiller
Date: 2009-05-23 05:12 (UTC)
Subject: (no subject)
Sending good thoughts in your direction. A second opinion is always a good idea in this situation. Not all docs operate under the same assumptions and with the same philosophies, and although they share information and keep up on the latest research, medicine is as much an art as it is a science, and you may need a different artist to get the picture you need.
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girlie jones
User: girliejones
Date: 2009-05-23 06:07 (UTC)
Subject: (no subject)
I'm seeing it as a sign that you bumped into your doctor so he could talk to you in person about it. But I agree with the rest of your approach - you're doing everything you can and if the second opinion has the same advice, then you know that's the way to go.

Sending my love
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User: farmgirl1146
Date: 2009-05-24 05:12 (UTC)
Subject: (no subject)
If you want, I can introduce you to a top oncologist here in Seattle. I think he is associated with Swedish Hospital. He was Andy Groves oncologist.
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Misty Marshall
User: mistymarshall
Date: 2009-05-24 13:41 (UTC)
Subject: (no subject)
Sheesh. Hooray for modern medicine, huh? Hugs and well wishes and thoughts of positive support. You have fought this before and you will again. Love MM
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