Tumorous: Blinded By Science

Juliet Disparte will undergo every test known to man to discover the cause of her cancer.

Illustration by Rebecca Elves

I was diagnosed with colloid carcinoma, sometimes referred to as mucinous carcinoma. Colloid carcinoma is like a little bag of mucus with cancer cells floating in it. Yum, right? I know.

Colloid carcinoma is a very rare type of invasive breast cancer, affecting less than 3% of all breast cancer patients. It usually appears in women who are older than 50. My mom, who is a nurse, dug up a bunch of studies on colloid carcinoma, and didn’t find any with patients younger than 48. I wondered, with morbid triumph, whether I was the youngest colloid carcinoma patient in history. I still don’t know.

The good news is that colloid carcinoma is a very slow-growing type of cancer, and it has only a 15% chance of spreading or coming back once it’s been treated. (As far as cancer goes, a 15% chance of recurrence is almost miraculously low.)

My cancer was also strongly hormone-receptor positive, meaning that the tumor was very receptive to (one could say fueled by) hormones like estrogen. This is also a very good thing, because treatments for these types of tumors are usually more effective than treatments for hormone-receptor negative tumors.

Breast cancer in women younger than 50 is often of genetic origin, and if it spreads, it tends to spread to the bones, brain, liver, or lungs first. (All very important parts of your body!) Over the course of three weeks after my diagnosis, I underwent testing to determine what had caused the tumor and if it had already started spreading.

One of my first appointments after my diagnosis was with a geneticist. He wanted to test my blood for the BRCA1 and BRCA2 gene mutations. These are inherited genetic mutations, passed down through families, which signify a stronger-than-normal potential for breast cancer. As I understand it, everyone has the BRCA1 and BRCA2 genes, and in normal circumstances, they work to suppress tumors in the body. But if a woman tests positive for harmful BRCA mutations, it means that these genes actually help tumors to grow, and her breast cancer is more likely to come back after treatment or spread to her ovaries or other organs. I was told this test is still fairly cutting-edge, and many insurance companies will not cover it because it comes with a hefty price tag in the thousands of dollars. Luckily, my insurance did cover it. The lab took two vials of my blood and sent them off to California to be analyzed. I would get the results back in two weeks.

In the meantime, to determine whether the cancer had already started colonizing other areas of my body, I had an MRI, a bone scan, and a PET-CT scan. The MRI consisted of lying in a tiny tube, boobs-down and with my arms over my head, for 30 minutes while it made very loud noises. I had to lie perfectly still the entire time; my arms and hands fell asleep after five minutes. The next 25 minutes were pure torture.

The bone scan was much easier — the machine made quiet, gentle swishing noises as I slowly passed through another tiny tube. The machinery is not sensitive to metal, so another person was allowed to sit in the room with me while I was getting my bones scanned. My husband came along and read a book. It took about half an hour, and compared to the MRI, the bone scan was downright relaxing. I almost fell asleep.

Then came the PET-CT scan, which was as tough as the MRI but torturous in another way: because cancer cells love sugar, I couldn’t eat any carbohydrates for two whole days beforehand. When someone tells you to stay away from flour, sugar, and starchy vegetables, let me tell you, the only thing you can think of is a nice, greasy bag of potato chips. For two. Whole. Days. I must have dropped five pounds just in potato-chip-related losses.

When I came in for the PET-CT scan, they gave me a nasty “smoothie” full of glucose and radioactive chemicals. Calling it a smoothie doesn’t make it go down any easier. And I had to drink two of them. At some point during my smoothie breakfast, they brought in a lead box, with a syringe inside (which is itself encased in a lead tube). This syringe contained more radioactive chemicals.

At this point, my husband had to leave the room, because I literally became radioactive myself. Despite what childhood cartoons might tell you, being radioactive does not activate superpowers or anything else awesome. Mainly I just felt tired, and a little nauseated. They injected me with the lead syringe and checked on my smoothie-drinking progress, and before I knew it, I was in — you guessed it — another tiny tube. The PET-CT scan checks soft tissues for cancer cells. Since I hadn’t eaten any form of sugar for the previous 48 hours, the famished, sluggish cancer cells would, supposedly, gobble up the glucose in the smoothies, and the radioactive chemicals would pick up on the cancer cells’ activity and cause them to light up on the monitors. It takes about half an hour, but I was allowed to take breaks and move around a little. On the way out, the nurses helpfully directed me to a basket with free bags of chips and candy. I grabbed two bags of Cheez-Its and ate them both in the car on the way home. They were the most delicious Cheez-Its I have ever tasted.

About a week passed with no word from my doctors. Then in the space of three days, I got the results from all of the tests:

The MRI showed six other possible tumors in the side with the confirmed tumor, as well as one other questionable spot in the other breast and a spot on my liver. My doctors were already moving pretty quickly because of my age, but after this test result came back, people got worried. Liver cancer is very serious business.

But, miraculously, the PET-CT scan came back completely clear, meaning they didn’t see any troublesome areas in my soft tissues. This is why they did the MRI and the PET-CT scan — it provided a way of double-checking test results against each other. False positives are very common with MRI’s, and the PET-CT scan showed that the spot on my liver was probably just “artifact,” meaning I had moved during the scan or the machine had picked up a spot of radioactive static.

The bone scan: also completely clean. My cancer had not spread to any other part of my body, as far as the doctors could tell. All of this positive news was a huge relief. I was able to sleep again, free from the crippling anxiety of the past three weeks.

Then my genetic test came back negative. My cancer was not caused by faulty genetics. (Thanks, Mom and Dad!) The outcome of the genetic testing was also a huge relief, of course, but in another way, it brought up one gigantic question: if my cancer was not caused by genetics, as we’d all assumed, then what did cause it?

Over the next few days, I ran through a never-ending mental catalog of all the risky behaviors I’d accumulated over the course of 27 years: smoking cigarettes on vacation in Spain, daily tanning sessions throughout high school, not getting enough vitamin D, getting possibly too much vitamin D, eating factory-farmed meats, or refined sugar, or canned tomatoes, or soy products. No longer terrified of an immediate and untimely death, I was now terrified that my cancer was caused by something I’d done, something that I was maybe still doing.

The next time I saw my surgeon, I asked her about possible causes of my cancer and rattled off the list of what I considered to be the prime suspects. She smiled kindly and put her hand on my knee. “The sad fact is,” she said, “we might never know what caused it, and you could drive yourself crazy looking for an answer.” I looked at my mom and my husband, who so far had been to every appointment with me, and I asked them, not for the first time, why this was happening to me. They had no answer, of course. And now I knew: no one did.

I turned back to my surgeon and she held up her hand, ticking fingers up as she tried to reassure me:

“We know it’s not genetics.” (She held up one finger.)

“You’re not over 50.” (A second finger.)

“You’re not a smoker or a heavy drinker — other than the cancer, you’re as healthy as you possibly can be.” (A third finger.)

“So that leaves us with one last possibility: it’s simply the mystery of life. But I’m here to fix you, and that is what I intend to do.”

Illustration by Rebecca Elves

Juliet Disparte lives in Seattle, where she works with books and goes to the doctor. For more about her adventures as a cancer patient, visit her blog, Tumorous. Follow her on Twitter.