How the CA-125 became a $50,000 blood test

What could be so simple as a blood test?

A quick prick with a needle, a wait of a day or two for results and a discussion with the doctor about those results. In the words of our vaunted politicians, it would be an “up or down vote” on whether there was anything to deal with.

That was the thinking of my wife’s physician when she ordered a test called the “CA-125.” At the time, it was popular as a screening test for ovarian cancer, a disease that had painfully and prematurely ended my wife’s mother’s life.  My wife felt fine, so an abnormally high level could indicate the presence of a small (read curable) cancer. A normal level would signal relief from fear.

As a physician and researcher, I consider myself an expert in the field of diagnostic testing, and was dismayed when my wife came home reporting  as much.

My exact response was “oh, s**t!”

What triggered my outburst was what I knew to be the other side of the story. The CA-125 is a well-meaning idea, that  fails miserably in action. The test is so  inaccurate that  it misses many cancers (in  doctor talk, a false negative) while  labeling many cancer free people as “sick”( a false positive) .

Well, it was too late, the deed was done and we’d have to live with the results. Besides, I was sure that my wife, a supremely healthy woman, wouldn’t be one of the unlucky ones.

A few days later, the first—but not the last—call came.  “Rebecca, your CA-125 is elevated . It’s not very high, but it’s high enough to be of concern. We’ll have to do some additional tests to see why. And that generated the first—but not the last—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.

It felt like her doctor was meandering around my wife’s body on a draconian treasure hunt.

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.

When Rebecca complained to her doctor that such conversation was not helpful, and was frightening her, the response was “My job is to frighten you.”  Rebecca wondered out loud: “I thought your job was to inform and advise me.”

This relationship was not going well.

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.

But it was getting higher each time.

Could there be a tiny cancer lurking in her ovaries? What else could cause this steady, but slight rise in the test levels?  My research suggested a number of possibilities, but nothing that quite fit Rebecca’s situation.

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.

My wife’s response  was to fire her and seek another internist with more compatible  values.

So, after months of uncertainty, surgery seemed like a form of relief. No matter the answer, it would provide a sense of finality that we had not enjoyed so far.

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.

Rebecca recovered fully from the surgery, just as healthy as she was months earlier, sans several organs, but she never quite recovered her trust in most physicians and their tests (fortunately, I’m her one  exception).

What was the cost of all of this? To paraphrase that credit card ad:

Multiple blood tests and imaging procedures (with attendant exposure to lots of x-rays): $10,000

Major surgery and 4 day hospital stay: $40,000

Five months of mounting worry, loss of several organs, and a simmering distrust of doctors and their tests:  incalculable.

Keith Marton is an internal medicine physician.

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