What Is Choriocarcinoma? My Healthy Pregnancy Gave Me Cancer

My son was just 12 weeks old when the first pregnancy test came back positive.

So did the second one. And the third. And the blood test.

“I really don’t think I’m pregnant,” I told my doctor. I’d chosen him for his laid-back vibes and sense of humor, which I loved during my labor and delivery. He yelled “Bag o’ steel!” when he broke my water. This time, I was feeling less amused.

The reason I was in the office and taking a pregnancy test in the first place was to get back on birth control. At 12 weeks postpartum, my body still felt stretched and bruised and tender. The thought of growing another baby inside of it right away made me want to surrender my uterus.

I’ve always been a person who lives life to the fullest. I work hard during the week and exhaust my husband, Chuck, by packing our weekends full of adventure. I’m a long-distance runner, a traveler, an outdoorswoman.

For these reasons and more, it took me years to come around to the idea of being a mother. I knew I’d be good at it, if I ever had the chance to try it. But I could see so clearly two paths laid out in front of me: with child, and without. Neither seemed fuller or more empty than the other.

But when I commit to the idea of something, I’m all in. And once Chuck and I decided to give parenthood a shot, I never looked back. I’m growing us another adventure buddy, I told myself. I booked tickets to Iceland for my maternity leave and added a jogging stroller and a top-of-the-line baby backpack to our registry.

Thorin was born in July 2017. I schlepped him up mountains and to the Oregon Coast. He shrieked when I first dipped his toes into the glacial waters of an alpine lake, and he giggled when I laid him down on the lakeshore to wiggle his tiny toes in the dirt.

I felt strong. I felt confident. I was Adventure Mom.

Flash forward to the week I took that postpartum pregnancy test: I was getting ready to start a brand new job. Chuck was preparing be a full-time dad. I really didn’t have time to figure out why my body mysteriously thought it was pregnant. And I really, really didn’t have time to actually be pregnant again.

At the appointment, my doctor believed I was pregnant. But he did tell me there were a few other possible explanations for a positive pregnancy test other than an actual pregnancy. For example, he mentioned it could be related to a piece of placenta left behind in the uterus, which would cause there to be residual human chorionic gonadotropin (hCG) hormone in my system, which the body produces during pregnancy. However, he said, these other reasons were unlikely.

I spent the week getting ultrasounds, chest X-rays, and bloodwork, irritated at the inconvenience. I didn’t start to get nervous until my doctor called me from his personal cell phone late on a Friday night.

He suspected he knew what was going on. He told me that he was going to say a word, but asked me not to Google it: choriocarcinoma.

Of course, I Googled it the second I got off the phone.

Choriocarcinoma is a pregnancy-related, cancerous tumor that develops in the uterus.

It’s a gestational trophoblastic disease (GTD), which is a group of rare tumors that develop in the uterus, in the cells that would typically become the placenta. It occurs in only about 2 to 7 out of 100,000 pregnancies in the United States, according to the American Cancer Society.

Choriocarcinoma most frequently develops after a miscarriage or molar pregnancy (an abnormally fertilized egg that develops into a tumor rather than a fetus). But in about a quarter of cases, choriocarcinoma can follow a healthy pregnancy and delivery, ACS says, and it causes hCG levels to elevate, hence my positive pregnancy test.

“This is not common,” Nehal Masood, M.D., an oncologist at MultiCare Regional Cancer Center in Tacoma, Wash., and one of the doctors who treated me during my diagnosis, told me when I reached out to him to write this essay.

In a typical pregnancy, fertilized cells in the uterus develop into the fetus and placenta. But some pregnancies are complicated when those cells don’t form as they should. In my case, Dr. Masood explained to me, the part of the placenta that anchors itself to the uterine wall developed abnormally, resulting in cancerous cells embedded in the lining of the uterus.

Dr. Masood added that this happens completely randomly and people have gone on to have successful subsequent pregnancies after being treated for choriocarcinoma.

Yet, I couldn’t help think, my baby gave me cancer.

By every other measure, my pregnancy had been by the book. We got pregnant on the first try, exactly when we’d planned to. I didn’t have morning sickness or food aversions—even in the Tsukiji Fish Market in Tokyo when I was just seven weeks along. I was able to keep running and doing yoga (minus the inversions) until the very end. Even my delivery was relatively easy, albeit 10 days late.

In hindsight, my only symptom after giving birth that could have pointed to the tumor would have been bleeding. Vaginal bleeding is a known symptom of gestational trophoblastic disease—but it’s also a known side effect people deal with in the postpartum period, and I’d just had a baby. I had no reason to think it was anything else.

I still felt strong and healthy before and after my diagnosis in October 2017, which made it even more jarring when I checked in for an appointment at the regional cancer center and was told that I was sick, and getting sicker.

Choriocarcinoma can spread to the lungs, brain, and other organs, and it’s harder to cure once it has spread. But luckily, we caught it early thanks to that pregnancy test, even if it was somewhat accidentally. The cancer hadn’t spread beyond my uterus, but time was of the essence. In the week between my first positive pregnancy test and the follow-up with my new oncologist, test results showed that my hCG levels jumped by 60 percent (and higher hCG levels may mean more tumor cells are present).

All of the sudden, everything was happening at once.

I got the official diagnosis on my third day at work at my brand new job in an industry I’d never worked in. It was hard enough being back to work with a 3-month-old without figuring out how I was going to fit chemotherapy into my life.

At the same time, Chuck was adjusting to life as a full-time dad to our son. To make it through the next four months, we would both have to reset our expectations, for our home life, for my performance at work, for my body, for our relationship.

I only cried once: the day I had to wean my son completely in the course of a single afternoon in October. It wouldn’t be safe to nurse him with the chemotherapy drugs pumping through my body. But I made myself move on. I feared that if I let myself think too hard about how badly I felt to be less than myself for four months of my baby’s life, I might not be able to snap back out of it.

Compared to more common cancers (breast, lung, colon, prostate), choriocarcinoma is “highly treatable” with chemotherapy and potentially curable, even in more advanced stages, Dr. Masood says. And because we caught it when I was only considered Stage 1, because I was young and (aside from the cancer) healthy and considered low risk, I was a candidate for single-agent chemotherapy. I got a “good” kind of cancer. And I got to treat it with a “good” kind of chemo. I went into it knowing I would come out on the other side.

But even though I knew it could have been so much worse, that didn’t make it easy.

So much of my identity is wrapped up in being strong and active, and I could feel that version of myself slipping away.

All I wanted was to be Adventure Mom—but my strong, reliable body that had carried me across the finish line of so many road races, to the summit of Mount St. Helens and through 41 weeks of pregnancy was not so strong anymore. I knew I was lucky—I had a strong support network and my prognosis was good—but as chemotherapy weakened my body, I felt like I was losing hold of the person I was.

I was exhausted. I was insecure about how I was showing up at my new job. I was weak and nauseous and feeling guilty about relying on my husband to hold our lives together. And I was trying to be a good mom, wife, sister, daughter, and friend.

Most of all, I was terrified that I would look back one day and remember the first year of my son’s life as a blur of hospitals, blood draws, and nausea, so I very deliberately forced myself to slow down and commit the good moments—no matter how small—to memory.

So I hit the brakes.

I was incredibly nauseous for the first half of December 2017. I went two weeks eating nothing but saltines, apple sauce, and plain mashed potatoes. But during those same two weeks, my son tried (and hated) solid food for the first time. I’ll never forget his face—covered with peas and looking utterly betrayed—because that’s the memory I’m choosing to keep.

Instead of running and hiking and planning adventures, I sat on the couch and read Dinosaur Dance and Gossie & Gertie. Instead of planning nights out on the town, we ordered pizza and played board games with family. I reset my expectations for myself. And, for the first time, I truly began to understand what it meant to live in the moment.

I also had to figure out a way to compartmentalize, to separate my experience with cancer from my experience as a new mom. I love irreverent parenting humor and thought I was hilarious the first time I riffed on a “You’re lucky you’re cute, kiddo—since you gave me cancer and all” joke. Then I paused and thought deeply about what it might do to a child to possibly grow up thinking he had anything to do with his mom’s cancer. My husband and I swore we’d never link the two again. I lived as two separate versions of myself: I didn’t want Mom of 3-Month-Old and Woman Going Through Chemo to meet.

I finished my last round of chemotherapy at the end of February 2018.

My cancer is gone, and it shouldn’t come back. I was healthy and lucky my body responded well to chemotherapy, and we caught and treated it early. But as the drugs chased the last of the disease from my body, they left something else in its place.

Before cancer, I was a person who went hard in everything I tried. I couldn’t finish one adventure before planning the next, wanting to do and experience everything. I still am that person, for the most part. But I’m slower now, more deliberate.

In the end, cancer taught me more about being a wife and mother than anything else in six years of marriage. It forced me to slow down and focus every bit of energy on simply enjoying being with my son and my husband.

I’m a better wife now, a better mom. And a better human.

Halley Knigge is a mom, writer, and adventurer living in Tacoma, Wash. She is cancer-free as of March 1, 2018.

Related:

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