Tumor Block, Part Deux

Forty-two days after my first request for genomic testing, things have finally moved forward.

When we left off I was waiting for the hospital, which failed to “cure” me (though that was not unexpected), had also failed to find my tumor block from which I could have my cancer genome processed in hopes that one or more of those pathways to your right indicated a treatable mutation.

In their effort to make this right the hospital sent 17 slides, which were evidently not stored with the tumor blocks, over the pathology to see if that would work.

Answer: nope.

The search for the tumor block becomes more desperate – if they don’t find it my options are A) forego the genetic testing and just try a series of therapies in hopes one works or B) undergo yet another bone biopsy in hopes that enough material is collected to run the test. If you haven’t guessed, I don’t particularly like these options.

The countless calls between my oncologist, myself and the pathology department where I had my surgery ended yesterday, like this:

Four layers of “can I speak to your supervisor” and they each know my name. Finally I have crawled my way to the top. I offer an impassioned plea of the limits of personalized medicine and the reality that my third-line therapy for METASTATIC breast cancer isn’t working and this is life on the line here. I extract another promise to search. They will call the pathologist of 12 years ago – sure he’s in Reno now, but maybe…. And they will send yet another email to any pathologist doing research. And they will dig through old logs. And, and, and…

The dire situation I have portrayed nearly feels real.

Again I hear that they just aren’t where they belong. See, the hospital has a warehouse in Torrence where they store tumor blocks “indefinitely.” And it’s a big hospital. A world-class hospital. There must be hundreds of thousands – probably millions of cancer tissue samples locked in paraffin. And mine just isn’t in the right spot. Talk about the proverbial needle in a haystack.

I get a briefing on their history. The electronic tracking system was installed a year after my surgery and was not back-dated. Since they are all missing, it’s unlikely that they were pulled for research, which suggests they were never filed. However, the drawer where they belong has space for them, suggested they had been filed at some point. Who might have pulled them and why is a mystery that shouldn’t be.

Five hours later my phone starts to ring. First it’s Kris, Vicky’s boss. While I’m talking to her, my doctor’s office calls. It’s my doctor’s office, I am sure.

After 6 weeks of searching, they found it. Them. Not the usual 2-3 tumor blocks, but 57 of them, sitting in a bag with hundreds of others, under 12 years of dust on the top of an old filing cabinet in a corner of the warehouse.

Relief, yes…but more questions as well.

Who thought it was a good idea to put them in a bag and toss them in the corner of a room?

Where is the respect, regard, for the person behind the tumor?

Have we become so desensitized by slides and blocks and de-identified data that fail to remember these tumors were insides mothers and fathers and children?

At the rate “personalized medicine” is moving, my request will, one expects, becoming increasingly common. What about all the other blocks in my bag?

And the least theoretical question of all: will they reveal anything relevant for me?

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3 Comments (+add yours?)

  1. Facing Cancer
    Jun 04, 2014 @ 11:03:50

    I am glad they found it, but how crazy is that? You are right, as personalized medicine becomes more personalized, I am afraid we will see more of this confusion. ~Catherine

    Reply

  2. marcy westerling
    Jun 04, 2014 @ 11:21:23

    I am seeing a block buster movie in the making….one with a happy ending, of course.

    Marcy Westerling
    http://livinglydying.com/

    Reply

  3. karen sutherland
    Jun 14, 2014 @ 20:52:16

    oh, Lori!

    I am so sorry I missed this post – I seem to be losing my place in time more and more??!! I am so glad they found your tumor block, but e-gads, what a failure to secure them safely. thank heavens for your tenacity and self-advocacy. I hope the people who responded to your pleas and finally found the blocks will raise holy hell to get answers and prevent this from ever happening again. and more importantly, I hope they help you to pin down genomic testing information that will give a direct approach to the most effective treatment.

    much love and big hope,

    Karen xoxo

    Reply

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