The Biopsy Waiting Game

651E8626-4585-41A7-A26F-A2BE7AF66F1AFirst, you wait. As anyone who has become an oncology patient knows, the biopsy comes first. You have the biopsy—or your child has the biopsy—and then you spend your hours thinking not so much about what the pathologist is doing, as what the results will mean for your life.

When Lucille had her first biopsy, a year ago, we knew she had a solid tumor in her face. We were waiting to find out if the tumor was cancer or what it turned out to be, a central giant cell granuloma. I don’t remember much about what I was thinking that day. Our third child was four days old—I was exhausted and still leaking from everywhere. But I do remember wearing the baby in his sling, kissing Lucille before they sedated her, and thinking everything would be okay as long as it wasn’t cancer.

That day, everyone, even the surgeon, was still referring to Lucille’s tumor as a “mass,” and we had not realized how fundamentally a benign tumor could change our lives. We had not imagined how large the tumor would grow or how disfigured our daughter’s face would become. We did not know that some people with benign tumors still became oncology patients. We thought that if a tumor was benign, most of its effect would be benign, too.

—-

One year later, we got it. This time, as we waited for pathology results, what was on the line was the oncology: the need—or not—for more drug therapy. Lucille had spent eight months on a drug called denosumab, still experimental in its use for this kind of tumor, risky, but not chemo. If she needed more drug therapy now, chemotherapy was looming as one possibility.

This time, we weren’t waiting for a biopsy, exactly. This time, the surgeon had cut most of the bony tumor from Lucille’s chin and had sent every chunk to the pathologist. This time, everyone was hoping the drug therapy had turned the giant cell tumor tissue into bone tissue, at least around the parts that had been touching the tissue the surgeon had left behind to form her new jaw.

This pathology wait began with Lucille’s recovery from a radical surgery. Helping Lucille through the beginning of her recovery buoyed us through the first week of waiting. This time, I did think about what the pathologist was doing. So did Lucille’s surgeon, who told us at her five day follow-up and her eight day follow-up that it takes a long time to slice up so much bony tumor into readable sections.

So Lucille continued a difficult recovery, and we waited. And we waited. Another thing anyone who has waited for a biopsy—or any kind of pathology report—knows is that the rest of your life keeps going. The rest of your life doesn’t care what the pathologist is doing. The kids—including the one recovering from a radical surgery—still need to be fed. The important emails from work still need your response.  The fight you are having with your health insurance company still needs to be fought.

So we waited. My husband, Chris, and I went back to work. I won one skirmish with the insurance company. Lucille progressed from a liquid diet to soft foods. We prayed, and we hoped.  We tried not to get irritable with each other. The surgeon emailed the pathologist to check in. The surgeon promised he would call me as soon as he got word. I carried my phone to class and apologized to my students when I had to look to see who was calling.

Lucille read and colored, took a lot of selfies, and wrote a story on her Chromebook. Nicolas went to preschool. Wade teethed a lot. The kids and I went for walks and played a lot of snorffle-tickle-monster. Friends and strangers sent cards and meals and gifts and flowers. We read and ate and opened and appreciated. And we waited.

And then, like most of the other times in my life when I’ve been waiting for news, the news came at the exact moment I’d forgotten to think of it. I’d just gotten back from class, where I had forgotten to bring my phone. I sat down in my office, and heard my phone vibrating from inside my desk. It was Lucille’s surgeon.

He had just that instant gotten off the phone with the pathologist. I could tell from the sound of his voice that the news was good. I did not get up to close my office door. I sat and listened. The news was better than good. There were no giant cells anywhere, not anywhere at all. Not in the border tissue, not in the tissue deeper into the tumor. Not even in the small, snowman-shaped declivity everyone thought would probably still hold some tumor cells inside.

“Do we need a second pair of eyes?” I asked, wondering if another pathologist should give a second opinion. Funny how sometimes good news can be just as unbelievable as bad.

But an entire pathology team had studied her tumor and with special interest. (She was, after all, a very special case.) No, we did not need to get another opinion. We did not need to make another difficult drug therapy choice. We did not need to do anything but stop waiting.

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7 thoughts on “The Biopsy Waiting Game

      1. Hi Karyn,
        Wow, you have been fighting CGCG for a long time. As you can see in the next post, Lucille’s tumor came back. She is back on XGeva now. Good luck with your treatment. Thanks for sharing your story with us. Please check in again.

        Like

  1. Such an incredibly difficult journey for Lucille and all of you. You have certainly learned the meaning of taking one day at a time. So thankful
    for good report. Our prayers continue for all of you. She’s an amazing little girl. May God strengthen all of you. Thank you for sharing your story with us.
    PennyLea

    Like

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