How the ca-125 became a $50,000 blood test ovarian cancer blood test

It began routinely with an ultrasound to check her ovaries. Routine is easy for me to say. Even the least painful or invasive test of the ovaries subjects one to various indignities. They all involve probing body cavities. The result was, in the words of her doctor, “essentially normal”, which meant that there were a few abnormalities that didn’t look like cancer. That was to become a recurring theme in the coming months.

Her “essentially normal” ultrasound—which showed a cyst or two– generated a second CA-125 , which came back just a little bit higher. Not the right direction, and enough to make us just the slightest bit queasy. We needed another opinion from an expert—so off to a specialist in women’s reproductive cancers—or gynecologic oncologist. He reassured us that cancer didn’t seem likely, but that we needed to be sure.

Being sure meant a series of other tests, especially lots of imaging tests. What we learned is that the more she was tested, the more “things” the doctors found, and the more uncertain the picture became. Some benign looking liver cysts—it turns out that Rebecca, like many other people, has a number of internal cysts– on her CT of the abdomen turned into “can’t rule out metastatic cancer, suggest further evaluation”. That’s radiologist talk for CYA.

That prompted her primary care doctor to insist on a search for other kinds of cancer, especially colon cancer. My wife refused what looked to her to be a series of new tests, designed to function as a distraction instead of a source of certainty.

To be sure, we were both becoming a bit frightened. To calm our fears we sought information from multiple sources. I turned to the medical literature and expert colleagues. Rebecca turned to me and to her doctor. I offered reassurance, but she could see the uncertainty and concern in my words and body language .

Her doctor offered certainty, borne of the conviction that Rebecca was secretly harboring a cancer. That led to a paradox: the less evidence of cancer her doctor found, the harder she looked to find it. She coupled that conviction with a need to convince Rebecca that it was time to prepare for all of the trappings of cancer treatment. She began to talk about how to deal with the vomiting and hair loss of chemotherapy.

The combination of my worried uncertainty and the doctor’s dark certainty led Rebecca to note that the house was being hung with crepe. In retrospect, that was an understatement. She later confessed to a sleep depriving terror that she would repeat her mother’s painful, asphyxiating demise at the hands of the same cancer.

The point was approaching that there weren’t many more tests left to do—and still no definitive evidence of cancer. But a third CA-125 came back even higher yet. It was still barely above normal, but nowhere near the range found in women with cancer.

We turned again to the gynecologic oncologist for answers. How long would we keep checking the CA-125? He offered an alternative. He would take a direct look at her ovaries. Translation: perform surgery, directly visualize everything in the abdomen, look at each ovary and take samples to examine under the microscope. To be sure, this offered a definitive answer. It reminded me of a dark joke among physicians. It goes like this: when an internist is offered a gift-wrapped package, he/she shakes it, holds it up to the light, smells it, and listens to it to determine what’s inside. When a surgeon is offered the package, he/she rips the wrapping off, opens the box and looks inside. Despite being an internist, I could relate to that. Now seemed like a good time to take the surgeon’s approach.

Rebecca had the final vote in this discussion. “If you’re going to cut me open, I want this to be the one and only time this happens, so when you’re there take everything out.” Having passed her childbearing years, she felt little need for all internal reproductive parts. So it was decided: she would undergo a total abdominal oophorectomy and hysterectomy, removal of the ovaries and uterus. The operation was scheduled for 3 weeks hence, which allowed us to take a long-planned vacation.

Enter stage left her internist, who called the surgeon and insisted he move up the date. Despite the fact that this whole process had already taken 5 months, she feared that a further 3 weeks could be the difference between life and death. She berated my wife for putting a vacation before the surgery.

Approaching my wife’s bedside, the smile on the surgeon’s face spoke volumes. The surgery was uneventful and there was no sign of cancer. Oh, and the mystery of the rising CA-125 was solved. The tip of Rebecca’s appendix harbored a pea-sized bit of aberrant uterine lining (called endometriosis), which is known to secrete CA-125.