Double half-caf soy hazelnut cappuccino, or why no one has “lung cancer”

Just as almost no one orders a plain old “coffee” anymore, no one has plain old “lung cancer.” “Lung cancer” is what they think you may have when your doctors see some suspicious cells, a mass that doesn’t respond to antibiotics, and/or symptoms such as persistent cough, shortness of breath, wheezing, weight loss, or pain. By the time they are analyzing the tissue from the first biopsy, however, it is already something else. Additional tests, such as a PET scan and genetic testing, add more details to the picture. “Lung cancer” is actually an umbrella term for a wide array of diseases.

For example: I have probably-stage-IV ROS1-positive adenocarcinoma of the lung, a non-small-cell lung cancer or NSCLC.

To explain some of those terms:

Probably Stage IV: All cancers are classified into stages, numbered from 0 to IV. The “stage” is a measure of how far the cancer has progressed. The stage is determined using several diagnostic tools, but one of the most important is the PET scan, which shows areas of the body where cells are dividing rapidly. Stage I cancer is small and contained; Stage IV cancer has spread (or “metastasized,” to use the technical term) to other organs (or, in the case of lung cancer, the other lung).

In my case, we think the cancer probably invaded the bones of my rib cage, making it stage IV, but we don’t know for sure. I could have just broken some ribs coughing, which is something that happens. Or I could have broken ribs coughing because they were already weakened by cancer metastases. We’ll never know because a healing fracture and a bony metastasis look a lot a like on a PET scan. The only way to know for sure if I have or have had bone metastases would have been a bone biopsy, which my doctors said was too invasive for the information we would get from it. I got the “probably stage IV” at my surgical consult in January 2013, when the surgeon interpreted my PET scan results and other imaging studies.

Non-small-cell lung cancer, or NSCLC: Lung cancer comes in two major varieties, small-cell and non-small-cell. 85 to 90 percent of lung cancers diagnosed are non-small-cell. They classified my cancer as NSCLC in the pathology lab, around New Year’s Day 2013, by analyzing cells from my first biopsy under the microscope.

Adenocarcinoma: There are further subtypes of NSCLC, including squamous cell carcinoma, adenocarcinoma, and large cell or undifferentiated carcinoma. Adenocarcinoma is the most common lung cancer diagnosis in nonsmokers, is more common in women than in men, and is more common in younger people than other types. This classification also came from the pathology lab.

ROS1-positive: This is the most recent and most hopeful news about my cancer. I learned it in August 2013 as a result of genetic testing on tissue from my third biopsy. ROS1 is a genetic mutation in my cancer cells. It’s a rare one; some of the more common mutations are EGFR, ALK, and KRAS. The medication I am currently taking, crizotinib, also known by the brand name Xalkori, actually attacks my cancer at the molecular level.

Note: some of the wording in these definitions is paraphrased from information at the following useful websites: www.cancer.org, the website of the American Cancer Society, www.mskcc.org, the website of Memorial Sloan-Kettering Cancer Center, and www.mayoclinic.org, the website of Mayo Clinic. Any errors, of course, are my own!

About Irene Elizabeth (Beth!) Stroud

Queer suburban mom, graduate student, lung cancer survivor, card-carrying United Methodist.
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5 Responses to Double half-caf soy hazelnut cappuccino, or why no one has “lung cancer”

  1. Tori says:

    Great info! Three biopsies? Wow. I can’t wait to hear the rest of your story.

  2. istroud says:

    See point 2 from my first post: “I wish I had known to ask them to take extra tissue in that first biopsy.” I’ll write about this eventually, but the short version is that there wasn’t very much tissue from my first biopsy at the community hospital, and it was depleted quickly. There wasn’t enough left to test for ROS1.

  3. Tori says:

    How funny, I had a hard time getting tested for ROS1 also. Here’s my story: http://lil-lytnin.blogspot.com/2013/11/knowledge-is-power.html
    My first scan on Xalkori is at the end of the month. I hope it’s working!!!

  4. I think this is one of the most important info for me. And i’m glad reading your article.
    But want to remark on some general things, The website style is
    ideal, the articles is really great : D. Good job, cheers

  5. Theresa says:

    Dear Beth,
    I found your blog through our mutual friends Stasa and Susan. I’m also a Mawrtyr (2001), and I grew up not too far from you in West Windsor. Thanks for starting this very informative blog. My uncle was just diagnosed with lung cancer a few weeks ago, and he’s meeting with his oncologist this week. I think he’s got a similar case as yours, but we’ll see. Best wish as you continue to thrive.
    Anassa kata,
    Terri ’01

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