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[cancer] Slightly more information, possibly slightly less progress - Lakeshore
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Jay Lake
Date: 2012-09-05 04:48
Subject: [cancer] Slightly more information, possibly slightly less progress
Security: Public
Tags:baltimore, cancer, health, personal
Yesterday I emailed my surgical oncologist with a question about whether there was value in making my next liver resecting as radical as possible. This was in connection with the radiologist's observation on the PET scan that two of the three tumors (Bush and Cheney, I believe) were right on the margins of the last resecting. My surgeon called me back in the late afternoon to discuss his thoughts. In short, here's what our conversation uncovered:

Due to prior resections, my liver anatomy is compromised. This means they cannot do large scale resection at this point. He agrees we should be as aggressive as possible in resecting what can be resected, but feels the risk of primary liver failure due to excessive surgery is every bit as bad or possibly worse than the risk of recurring metastasis. He also recommended I see one of his surgical colleagues at Johns Hopkins while I am here in Baltimore, and is providing me with assistance in trying to jump the appointment schedule and get in while I'm here in Baltimore to see the medical oncologist.

He expressed a willingness to reverse the order of chemo and surgery, per my questioning of the treatment plan as currently contemplated, but explained that the reason I'm not getting satisfactory answers to my questions about that process is that they simply don't know the answers at this point. There are no clinical standards for my pattern of disease progression. He felt that my medical oncologist would continue to argue strongly for systemic treatment (ie, chemo) first.

For whatever it's worth, he also characterized the current tumors as likely being a mix of recurrence from leftover material (in the case of one of the tumors on the resection site) and novel tumors from the metastatic pathway.

We also tangentially discussed my risks of recurrence and mortality potential. He agreed with my expectation of multiple recurrences until it gets away from us.

What I derived from this conversation was two things. One, that there's more likelihood than I had thought that we might change the order of treatment. Two, my mortality assessments are in the right ballpark, granting the overall uncertainty of any individual cancer patient's disease progression.

I suspect I'll be pounding the phones today trying to secure that additional appointment.

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PolyDad
User: polydad
Date: 2012-09-05 13:08 (UTC)
Subject: Transplant?
Hi, Jay --

I'm ignorant in the field and it's none of my business, but have either yourself or the oncology staff considered simply replacing your liver entirely? I happen to be using my own at the moment, but it's possible that someone who doesn't have that constraint could be found.

best,

Joel
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Jay Lake
User: jaylake
Date: 2012-09-05 13:10 (UTC)
Subject: Re: Transplant?
Basic issue with transplant is that I'm a low probability beneficiary, as the metastatic seeds are loose in my bloodstream and lymphatic system. So a new liver would simply be recolonized by the tumors. Given the incredible shortage of organs available for transplant, and my likelihood of lack of long-term benefit, I'm too low priority to even make it on to a transplant list.
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Starshadow
User: arielstarshadow
Date: 2012-09-05 13:40 (UTC)
Subject: Re: Transplant?
I was wondering the same thing - thank you for answering the question.
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Bob
User: yourbob
Date: 2012-09-05 16:44 (UTC)
Subject: (no subject)
Yes. Thank you for the answer. My always, if generally unspoken, good thoughts.

You looked great in the Hugo video feed.</p>

Best.

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MG Ellington
User: xjenavivex
Date: 2012-09-05 14:37 (UTC)
Subject: (no subject)
I hope you get an appointment while you are there.
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