[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 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 ‘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.

8 thoughts on “[cancer] By circuitous paths information accrues, being an update

  1. LauraJMixon says:

    I’m really impressed with how effectively you are dealing with the cancer treatment megalith.

  2. In the “this does not makes sense” department, they already have the pathology report from your last cancer, right? So they should know the usual course of treating THAT cancer.

  3. Mary Kay says:

    I’m so sorry you’re having to deal with this. I know exactly how you feel though. When, about 10 years ago, there was something unclear and unresolvable on my mammogram and the ultrasound didn’t help, I thought it totally unreasonable of one surgeon I called to ask to have my medical records sent to her so she could evaluate and decide whether to offer me an appt in a couple of months. I wanted it done. NOW. I called by GP and cried and he got me in with a really good surgeon who did an excisional biopsy which made me really happy. Especially when it was benign. I’d offer a hug, but I’m a hotbed of icky viruses.

    MKK

  4. Catherine Shaffer says:

    You are asking all of the right questions and making all of the right decisions. One of the most difficult things to accept and understand and deal with in cancer is that while in some cancer situations it is true that early detection and treatment is the difference between life and death, there are others where a delay does not make a big difference in outcome. This may be the case in your specific situation with your cancer, and it may be based on your physicians’ clinical experience and knowledge which it is very difficult to convey in a typical airport consult. 😉

    However, it is an excellent idea to get a second opinion on this. You will feel much better, and there is a chance that the guys at Hutchinson or whatever will think your doctor is smoking crack and offer you a treatment plan you will later credit with saving your life. I have heard stories like this before.

    Just had a very dissatisfying and inconclusive consult with my mother’s cancer docs. She has a new mass in her lung, and the upshot is that they don’t know what it is. Could be atypical pneumonia. Could be atypical lung cancer. Could be atypical tuberculosis. Could be an atypical metastasis of the cancer she already has. We all think it’s pneumonia (she’s not sick), but we are also doing a wait and see and recheck in a month kind of thing. In her case, the doc was very honest that if it’s lung cancer it’s not survivable, so we are just not going to think about that for now. 🙂

    1. Jay says:

      I’m just trying to work through it. I hope you all find reasonable answers for your mom. That sounds hellish. 🙁

  5. Jill Z says:

    Jay;
    Good for you! Exploring options is always a good thing to do–will gain you information and certainly help you feel better! Medicine, alas, is not an exact science; contradictory evidence, varying levels of expertise and experience. The Hutch is a number-one institute; rife with clinical trials offering patients even more options.
    Have fun in SF! (my ex-home)
    🙂

  6. Cliff Brooks says:

    Hey man, I’m thinking good thoughts for you. Heavy burdon to carry on your shoulders — so it’s great you’re blogging it. Just remember that when friends and family offer a shoulder to lean on, take em up on the offer. If there’s anything I can do, just ask.

    Be well.

    1. Jay says:

      Thank you very much, Cliff.

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