Jay Lake (jaylake) wrote,
Jay Lake

[cancer] By circuitous paths information accrues, being an update

[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.

Tags: calendula, california, cancer, travel, weird

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