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A woman with metastatic breast cancer describes the overwhelming dread she feels every time she must wait to hear the results of a tumor marker test.
I’ve never excelled in math, nor did I ever really like math or numbers. I was always more of a language arts kind of girl. I enjoy reading, writing and all things creative. I never realized how important numbers would become to me in my life until I was diagnosed with metastatic breast cancer.
That very first week I spent in the hospital when I was diagnosed seven years ago, I became especially aware of the little gold-capped vial of my blood that gets sent off to the lab every month or so. The seafoam green-capped vial and the purple or lavender-capped vial are important too, but it’s the numbers from that gold-capped one that give me the most anxiety.
I can remember being in that hospital bed while the phlebotomist was preparing to draw blood samples when the oncologist walked into my room. She began barking orders at the phlebotomist about making sure to get the gold one. I thought to myself, “What’s the gold one?”
At that time everything about cancer was so foreign to me. I knew nothing at that point about lab vials or the meaning behind their colors. After having blood drawn too frequently to count, I learned rather quickly that this gold tube held the tumor marker numbers. Each different colored cap represents a different type of lab test. Gold is my nemesis.
Tumor markers are the biomarkers found in the blood that can be used to detect the presence of cancer. For my specific cancer, the tumor marker test CA 27-29 is used. CA 27-29 is
the name of an antigen. Breast cancer is most likely to release this antigen and this test measures the levels of CA 27-29 circulating in the blood. For some people, tumor markers are not an accurate predictor of disease progression. For others, like me, they are spot-on.
This is where the stressful part comes in. Every time I see that little gold-capped tube with my name on the label my stomach does a bit of a flip-flop. The results generally take a few days to come back and then they get posted into MyChart, the patient portal. I have the MyChart app on my phone and it is connected to my watch. I get pinged with, “You have a new test result,” as soon as it hits my chart. I can’t even begin to describe the feeling I get every time this happens. Living with metastatic breast cancer, it happens more often than I’d like.
Given that I’m more of a Type A personality and like to be in control, I am instantly dropping what I am doing and opening the app to see my results. My stomach is usually in knots and I have this intense fear of the worst possible outcome rising through me. I’m always just waiting for the other shoe to drop.
It is that proverbial double-edged sword. On the one hand, I want to know what those numbers are to know if I am remaining stable or if I’m having disease progression. On the other hand, knowing those numbers creates a lot of unwanted stress and anxiety.
Once I do know what those numbers are from that little gold-capped tube I feel more mentally prepared to go to my follow-up appointment. I feel like I have the time to process those numbers and be ready to face whatever comes next. The instant gratification that comes with opening the results as soon as they are available to find a stable number has been recorded in my chart lifts the burden I carry deep within myself while waiting.
When those numbers are steadily on the rise, I know a treatment change is coming and I just hope I don’t outpace the research and the new treatments being developed. I try to celebrate the little victories of stable tumor markers and know I will breathe a little easier until the next blood draw and the waiting game that goes along with it.
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