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Ideas

Our home for bold arguments and big thinkers.

Giada Fiorindi
Would having a hysterectomy make me less of a woman?
IN THE STARS

I didn’t think I wanted kids but cancer forced me to decide

Jaime Joyce
By Jaime Joyce

I celebrated my 39th birthday with dinner and too much red wine at an inn on Martha’s Vineyard. I remember the scent of fall, the roar of the Atlantic ocean, and the brightness of the stars, which were so abundant compared to what I was used to seeing in the Brooklyn sky.

On the last day of the trip my partner and I climbed into the bed of a pickup truck for a nature tour. The endpoint was a lighthouse with a cheerful crimson door and a wooden staircase that wound toward a catwalk overlooking the sea. I felt calm and serene, pleased with my circumstances.

But the feeling did not last. When the tour was over, I stepped out of the truck and as my sneaker crunched the gravel road I felt my phone vibrating in my coat. It was my gynecologist’s office.

Eight days earlier I’d had a procedure called a colposcopy, in which my doctor used a magnifying device to check my cervix for precancerous lesions. Although my annual Pap smear had come back normal, I’d tested positive for the human papillomavirus (HPV) for the second time in six months—and the fourth time in five years—which is why my doctor had ordered the colposcopy. A biopsy taken during the exam showed that I had adenocarcinoma in situ, or stage 0 cervical cancer, the precursor to invasive disease.

I wanted to end the call. Instead I rushed it, telling the nurse that I was on vacation, that I was on my way home, and that I would call back tomorrow.

“Who was that?” my partner asked when I got into the car. I slumped into the seat and cried.

I composed myself and called back. The nurse told me I should come into the office for a procedure called a LEEP, or loop electrosurgical excision procedure, which would remove abnormal cells from the cervix. The acronym made it sound so carefree. It was, she said, both a diagnostic tool and a treatment. We drove home for hours in darkness along I-95 and I kept hearing the word carcinoma in my head.

HPV: the common cold of STDs

HPV is so prevalent it is sometimes referred to as the sexually transmitted equivalent of the common cold. In the first season of the HBO series Girls, Lena Dunham’s character (Hannah Horvath) learns she has HPV. Her friend Shoshanna says their friend Jessa has it too. “Like a couple strains of it,” Shoshanna adds. “She says that all adventurous women do.”

According to the National Cancer Institute, 90% of sexually active men and 80% of sexually active women in the United States will become infected with HPV. For most people, especially those in their twenties, HPV is not cause for great concern. Ninety percent of the time the virus goes away on its own within two years, beaten back by the body’s immune system. Sometimes, though, HPV persists. It can stick around for decades, and a person can live for years with the virus and not even know it’s there.

Nearly all cases of cervical cancer are caused by HPV. Globally, cervical cancer is the second most common cancer among women. It kills more than 270,000 women annually.

Current guidelines recommend routine HPV testing for women beginning at age 30, though younger women may be tested depending on Pap smear results. HPV-related cancers are relatively uncommon in men; an HPV test for men has yet to be approved.

Generally, cervical cancer in its earliest stage has no outward symptoms. The median age at which the invasive disease occurs is 48, with precancerous conditions appearing 10 to 15 years before that. When I found out about my precancerous condition I was a year short of 40.

The one sure way to stop cancer’s march

Back home in New York, I cancelled the LEEP. Instead, I made an appointment with a gynecologic oncologist. I’d sworn off male gynos when I was 19 or 20 after being examined by one I didn’t like at a Planned Parenthood clinic in downtown Brooklyn. But a woman whose opinion I trusted had recommended this doctor, and he practiced at one of New York City’s top hospitals. Those bona fides mattered more to me than gender. We met at the end of October, two weeks after I’d gotten my diagnosis. He was tall and around my age, with kind eyes, a solid handshake, and a gap-toothed smile. His demeanor was calm and I liked him immediately.

First we did another colposcopy, and after that we went to his office where my partner and I sat across from him at his desk. He explained that about 90% of all cervical cancers are squamous cell carcinomas, which means they affect the flat, scaly cells that line the outside of the cervix, making the condition easier for doctors to see and treat.

But adenocarcinomas, he said, are much more rare and can be difficult to detect. They form higher inside the cervix than squamous cell cancers, closer to the uterus, in the mucus-making gland cells. Precancerous adenocarcinoma in situ—in situ meaning “in place,” or localized—often goes unseen in routine exams. The condition can be hard to treat.

“But if it hasn’t spread,” he said, “you’ll actually have a more difficult choice to make.”

I did my best to write down what my doctor said, but when I looked at my notepad I saw half-words. Nonsense. “I’ll take notes for you,” he said. His simple drawings of the female reproductive system, embellished with inky dots from the point of his pen to show how the cancer can spread through the cervix and uterus, were not the kind of notes I was expecting—I wanted something I could Google—yet they drove home his point.

“The disease is multi-focal,” he said, meaning that it can crop up in more than one spot. “It doesn’t like to stay in one place,” he told me. In 30-70% of cases, it can take about a decade for cancerous cells to become invasive, according to the National Cancer Institute. In some cases, though, it can happen in less than a year.

He advised a kind of biopsy called a cold-knife cone. The name alone made the LEEP sound far more appealing. The procedure would cut a large, funnel-shaped bit from my cervix. From the tissue sample he would be able to tell if the cancer had spread beyond the cervix. If it had, I would begin radiation treatment right away, he explained.

“But if it hasn’t spread,” he said, “you’ll actually have a more difficult choice to make.”

I could come to the office every three months, for a year, maybe longer for a colposcopy, in order to track the movement of the abnormal cells—a decision a woman might make if she wanted time to get pregnant before having a hysterectomy. Or I could have a hysterectomy right away. The surgery is not a first-line defense against all stages of cervical cancer, but it’s standard for adenocarcinoma in situ, the one sure way to stop cancer’s pernicious march.

We have an HPV vaccine—why aren’t people using it?

Today, three vaccines exist to protect against HPV and cancers caused by the virus. Unfortunately, their development came too late for me. It wasn’t until the early 1990s that HPV was found to cause cervical cancer. Before that, the disease was blamed on herpes. I was a college student in the early 1990s. I’d never heard of HPV. The focus, at the time, was HIV and AIDS. Nearly two decades later, in 2008, Harald zur Hausen, the German virologist who discovered the link between cervical cancer and HPV, was awarded a Nobel Prize. (His co-recipients were the doctors who discovered HIV.)

Zur Hausen’s discovery led to the creation of three vaccines. Gardasil was licensed for use by the FDA in 2006, and Cervarix was introduced in 2009. Late last year, the F.D.A. approved Gardasil 9, which has been shown to prevent up to 90% of cervical and other HPV-related cancers. The Centers for Disease Control’s Advisory Council on Immunization Practices recommends the vaccines for girls and boys ages 11 and 12. The vaccines are delivered in a series of three doses over a period of six months; catch-up HPV vaccines can be given until the age of 26 for both males and females. (In Australia and Canada, HPV vaccination is recommended for women until age 45.)

“If only there was a vaccine to protect against breast cancer we’d be lining up—wouldn’t we?”

A new report from the CDC, however, shows that while HPV inoculation rates have risen since 2006, the percentage of girls ages 13 to 17 that have received full vaccine coverage in 2014 remains low, at about 40%. Full coverage for boys between those ages is worse, at just 22%.

Still, despite those dismal inoculation rates, a 2013 study showed that the incidence of vaccine-targeted strains of HPV in girls has dropped by more than 56% since 2006. The vaccines appear to be working. So why aren’t more young people getting the shots? After all, as the author Judy Blume wrote on her blog: “If only there was a vaccine to protect against breast cancer we’d be lining up—wouldn’t we?”

Some adults have not immunized their children against HPV out of fear that the vaccine is harmful; others say their kids don’t need the shots because they’re not sexually active. In fact, that’s the best time to vaccinate. Then there’s the other worry: that inoculating pre-teens against HPV will encourage them to have sex. However, a report published last year in the journal Pediatrics says the HPV vaccine does not change adolescents’ sexual behavior.

When Hannah Horvath got HPV on “Girls,” I remember thinking, I wish I’d been more adventurous. I’d spent my twenties and thirties in two long-term relationships­—one with a man, the other with a woman. The truth is, a person can become infected with HPV after just one sexual encounter, with just one partner. A person can become infected from skin-to-skin genital contact only, no intercourse required.

A primal strike against womanhood

“I just want it out of me,” I told my doctor, referring to the abnormal cells. Then, referring to the hysterectomy, I added, “Whatever we have to do, I’ll do it.”

I had never been pregnant. I did not have children of my own, and I had never felt the desire to have a baby or to be a mother. And yet, for just over a decade, I had found great satisfaction as a co-parent, helping to raise my partner’s daughter. I was happy, and my priorities did not include fertility. The cold-knife cone was scheduled to take place in three weeks.

To see hysterectomy as a primal strike against womanhood, and the loss of the uterus as a loss to be mourned, even among women who never wanted kids in the first place, was common.

It was during those three weeks, however, that certainty gave way to creeping ambivalence. Maybe I did want to get pregnant. Maybe I at least wanted the choice. I was good with babies, and I cared about children. For seven years I’d been a teacher, first at a Quaker school in Brooklyn, then at a hippy-dippy public school in the East Village, and for the past three years I’d been employed as an editor at a children’s news magazine where we reported on dinosaur-fossil discoveries and explained North Korea to 10-year-olds. I could certainly handle a kid. I was afraid that one day I would regret not having one.

Then there was another idea that began to take root: that having a hysterectomy would make me less of a woman. It was an idea almost too embarrassing to admit. It seemed unreasonable to be sentimental about my womb after being told cancerous cells were probably just biding their time before invading and transforming into something potentially deadly—and crazy to have qualms about saying goodbye to my period. But an online support group offered reassurance: To see hysterectomy as a primal strike against womanhood, and the loss of the uterus as a loss to be mourned, even among women who never wanted kids in the first place, was common.

Michael Jackson, Joni Mitchell, and a new beginning

My mother was in New York for Thanksgiving when the results from the cold-knife cone came back. On the day before the holiday we’d taken a chilly double-decker bus tour of Manhattan, and after maneuvering through Greenwich Village we’d disembarked on lower Broadway. I answered my doctor’s call on the steps of Trinity Church.

I was told that the margins, or outer edges, of the biopsy still showed evidence of disease, and that the risk of finding residual disease throughout my cervix was significant. I scheduled the hysterectomy to take place three days before Christmas. Recently, when I asked my mother to recall that moment on the church steps, she said she had seen my entire life flash before her eyes. “No parent wants to see their child die before them,” she told me. I’d been nowhere near death. I understood that. I now understood that although she did not express it at the time, my mother had been more afraid than I was.

Rays of silvery daylight streamed so intensely through the wall of windows that looked out onto the East River that I began to imagine I was having a near-death experience.

It was a Wednesday morning, around 7:15am, when I arrived at the hospital. As instructed, I’d not worn jewelry, nail polish, or makeup. Anti-anxiety pills were also part of the pre-operative ban, so I tried to calm myself by asking questions. There I was, dressed in a pinstripe gown and socks with anti-skid soles, inquiring about the name of the drug that would be used to knock me out. Propofol, the nurse said. I nodded: “Oh, the drug that killed Michael Jackson!” The nurse did not laugh.

Another nurse came to escort me to the operating room. I told her I was scared. She told me she understood. That she had had breast cancer. I felt like a wimp. As we walked the wide corridor, rays of silvery daylight streamed so intensely through the wall of windows that looked out onto the East River that I began to imagine I was having a near-death experience.

There must have been about a half dozen people in surgical caps and scrubs in the room, prepping for my arrival. They were listening to Christmas music. One sat before a table sorting stainless steel instruments. “It’ll be like having a glass of wine,” the anesthesiologist said when I asked how Propofol would make me feel.

About three hours later I woke up in the recovery room. That night in the hospital, tethered to the bed by a catheter, I stayed up late and read a biography of Carole King, Carly Simon, and Joni Mitchell. The book had been assigned for a seminar that would begin at the end of January, my final course in a part-time graduate program at Columbia University. I lingered over the parts about Joni’s baby, born in secret and given up for adoption, and the torment Joni endured after relinquishing her only child.

The next morning, three doctors appeared. One of the men told me to open my legs. “It’s easiest if you spread them like a frog,” he said. I was a little embarrassed, but I lifted my gown. “Now, cough,” another doctor said. I coughed, and one of them—the woman?—reached for my vagina, extracting from it the packing material used to control bleeding after a hysterectomy. It seemed like an endless ribbon of gauze, and I felt as if I were part of an obscene magic trick. I could not stop laughing. “Better laughing than crying,” one of the doctors said.

I was back home by Christmas Eve, and I spent most of the next four weeks on my couch, in silky purple pajamas. One day, someone called from my doctor’s office to say my cervix and uterus had been examined after surgery and found to be cancer-free. My reproductive organs had been cut into see-through slices, and some of the tissue had been preserved on glass slides—parts I can no longer use put to use in the service of science. The rest was medical waste.

Most of the time, though, I spent my recovery reading, in preparation for the Columbia class. Four months later I graduated with honors and a cash prize. Three days after the commencement ceremony my partner and I separated and I moved into a campus sublet. Eventually we ended the relationship. As I began to open up to the possibility of a new one—perhaps, even, with a partner for whom my infertility might make a difference—I wondered how and when I would have a conversation about my heath.

Lying in wait, forging ahead

Nearly five years have passed since my diagnosis and surgery. The hysterectomy removed my uterus and cervix, but it spared my fallopian tubes and ovaries. This kept me from going into immediate menopause, and I continue to ovulate. I call this my fake period. Minus menstruation, I have only crankiness and chocolate cravings to tell me it’s that time of the month. It is nice not to fear white jeans. It is nicer, still, to not fear cervical cancer.

Yet the fear has not gone away completely. I continue to see my gynecologist for annual exams. Though Pap smears aren’t necessary after hysterectomy, they’re recommended if the surgery was done because of cancer or a precancerous condition. Without a cervix to scrape cells from, however, a post-hysterectomy Pap smear is performed on an area called the vaginal cuff, which is the top part of the vagina that’s been sewn shut like the end of a sock. My Pap tests have all come back normal, and I’ve consistently tested negative for HPV.

I’ve also wondered if I should have held off on the hysterectomy and tried to conceive while I still had the chance. But that is not my life, and I’m OK with it.

But the virus is known for its ability to lie dormant, and in that state to go undetected by HPV DNA tests. Add stress and a compromised immune system and the virus could reawaken. And just because the surgery removed the bad cells from my body, that doesn’t necessarily mean it took the HPV, too. It doesn’t mean that I couldn’t get the virus again, or give it to others, or that I am no longer at risk for developing other HPV-caused cancers, like cancer of the vagina, vulva, anus, and throat.

I sometimes wonder what it would be like to carry a child, to give birth, to be a mother. After a big meal last summer I stood before a full-length mirror and pooched out my belly. The protuberance looked like a second trimester baby bump, and I cradled it in my hands for a moment before sucking it back in.

I’ve also wondered, from time to time, if I should have held off on the hysterectomy and tried to conceive while I still had the chance. But that is not my life, and I’m OK with it. I’m healthy and well. I have fallen in love again, too.

It was over dinner on our third date that I told him about the HPV, the cancer, and the hysterectomy. I told him that I could not have kids, and that we should stop seeing each other if that is what he wanted in a relationship. We are still together.

Last year, two weeks before my birthday, on a trip to south-central Ohio, we laid a bedspread on the dewy grass, looked up into the sky, and saw, in the course of an hour, seven shooting stars.