NYRVAH, 34, art-gallery owner
I've always been into eating right and exercising, so I was surprised when I developed a little potbelly. I also started getting the urge to urinate so often that I began to feel that if I was going to drink something, I'd be smart to do it in the bathroom. But I didn't think it was anything serious until my abdomen—slightly to the left of my belly button—really ballooned within a month. It was like I was four-months pregnant. At the same time, I developed intense abdominal pain—like bad menstrual cramps—and I felt exhausted. I got my period and passed large blood clots, which scared me. My partner and I wondered if I was pregnant and something was wrong with the baby.
A pregnancy test at the clinic turned out positive, and I started to get excited that maybe the baby could hold on. But five minutes after the gynecologist did an exam, her face dropped: My uterus was big enough for a 20-week pregnancy, she said, but I'd had a period the previous month. She sent me right to a hospital, which performed ultrasounds that showed no baby. A week of sonograms, CAT scans, MRIs, and exams brought no diagnosis. Even so, I figured it was fibroids, which run in my family, so I wasn't too worried—except about how I'd pay for all this, since I didn't have insurance.
The hospital thought I had an unviable pregnancy, gave me a drug to expel the fetus, and sent me home. The medicine caused unbelievable cramping and bleeding, which hadn't yet subsided several days later. I contacted numerous doctors, but without insurance, none would see me. So my partner and I took a 10-hour train ride to Canada, where emergency care is free. I was still bleeding, and to make myself look even worse, I ran up and down stairs to get my temperature up. Then I called an ambulance from a friend's house in Montreal. Two days later, a doctor reading a new sonogram found a melon-size tumor on my left ovary.
I was shocked—and later, angry— that all the doctors I'd seen during the previous month had gambled with my life by missing this. But I've learned that because ovarian cancer often doesn't strike women under 60, most doctors just don't think it's a possibility. Plus, everyone I'd seen was looking for a pregnancy and may not have considered a tumor.
My cancer was advanced—stage IIIC—but luckily, it was a type called dysgerminoma, which responds well to chemo and has a higher cure rate than the more typical epithelial cancer (often very invasive). It produces the same hormones that pregnancy does, which is why everyone thought I was pregnant.
Even though I had cancer, I kept focusing on the fact that my prospects were so good: I was told that if I didn't have a recurrence within two years, the cancer would probably never come back. I had surgery to remove the tumor and the affected lymph nodes, plus four months of grueling chemo. Fortunately, the weight of it being cancer didn't really strike me until later, and by then, I was in remission. I may not be able to have children, but I don't feel sorry for myself. Now, I'm trying to help other women recognize the disease and push for a diagnosis.
SERENA, 27, nursing student
In the middle of my senior year of college, I began to feel tired all the time. My strength was so zapped that I had to quit my beloved crew team— I just couldn't keep up. I also became constipated. I went to several team and school doctors, most of whom initially thought I was pregnant (I wasn't), or prescribed laxatives, which didn't help much. A few months later, my waistline began expanding. I'd always been fit and thin, so it upset me that my clothes didn't fit. I went to more doctors—six during the year—but none gave me a diagnosis other than constipation. I didn't think the problem was serious, but I was completely frustrated that doctors couldn't find the cause of my fatigue and bloating.
After graduation, despite my fatigue and four-inch-thicker abdomen, I pushed myself to accompany friends to a Wyoming ranch for the summer. Within a few weeks, I felt like I had to urinate constantly; I'd get up numerous times at night to use the bathroom, and I'd still feel the urge when I got back to bed. One late- June morning, it became painful to swallow. I went to another doctor, who diagnosed mononucleosis. Yet I knew something else was wrong. I was so frustrated that I told him I wasn't leaving until he figured it out. He was the first to do a pelvic exam, during which he thought my uterus was enlarged. He sent me for a sonogram: It revealed an ovarian tumor the size of a cantaloupe. The doctor told me most tumors are benign, so I didn't think the worst—I was just pissed off that this was ruining my summer fun. On top of it all, I really did have mono.
I went home and got another ultrasound. This time, the radiologist thought I had a stage I, grade I tumor. I can't remember anything between the pronouncement that I might have cancer and my surgery five days later, except that I was completely stunned.
The surgeon said he would try to preserve my fertility but that I might need a full hysterectomy, and that he would only know once he performed the surgery. It terrified me that I might never have children, but I knew it was important to remove the tumor. Thankfully, the fact that I could have died from the cancer didn't cross my mind.
The type of cancer I had—stage I germ-cell immature teratoma—doesn't spread as quickly as the more common epithelial cancer, so he just removed my right ovary. I expected to need chemo and radiation, but the cancer hadn't spread , so I was spared that. I was lucky, but I was also determined. Not taking "we don't know" for an answer got me a diagnosis that was crucial to my beating the disease.
3 NEW WAYS TO SPOT OVARIAN CANCER EARLY
For years, women and their doctors have considered ovarian cancer a silent disease, showing no symptoms until the cancer is already advanced. By then, survival rates are disturbingly low: 20 percent for cancers found in stage III or later. But if the tumor is caught early, a woman's chances of surviving the disease are 95 percent.
A study published last June in the Journal of the American Medical Association, sponsored by the Ovarian Cancer Research Fund, indicates that ovarian cancer often does have identifiable symptoms that arise more quickly and more frequently than anyone realized. In the study, 43 percent of the women with cancer had a combination of certain symptoms—severe bloating, increased abdominal size, and urinary urgency—that occurred approximately 20 to 30 times a month.
"Everyone has occasional bloating and abdominal pain, but when it occurs almost daily and isn't tied to your period or the foods you eat, go to see your doctor," says Barbara Goff, M.D., codirector of the division of gynecologic oncology at the University of Washington School of Medicine.
If you have these symptoms, ask your doctor to perform some or all of the following:
1. Pelvic exam
Doctors will feel for a hard mass or other irregularity on your ovaries. This is the same manual exam you get when you go to the gynecologist (you should get one every year if you're over 18).
2. Transvaginal ultrasound
This test, done by inserting a probe into the vagina, is the primary tool used for diagnosis. The caveat: It can't always distinguish between a cancerous and noncancerous tumor.
Sometimes, surgeons have to remove the tumor in order to examine its cells for cancer (removing the tissue with a needle could spread cancerous cells).
OVARIAN CANCER: WHAT'S YOUR RISK?
One in 58 women will get ovarian cancer—that's about 25,000 a year. So far, dietary habits and exercise haven't been shown to have much influence, but other factors do.
WHAT RAISES YOUR RISK:
• A mother, sister, or grandmother who has or had breast or ovarian cancer. Women with a family history are two to three times more prone to get the disease than other women are. • Getting your first period before age 12. • A history of endometriosis.
WHAT LOWERS YOUR RISK:
• Being young. Most women with ovarian cancer are age 60-plus. • Having children—especially after age 35, according to a recent study—and breastfeeding them. • Taking the Pill. After five years of use, ovarian-cancer risk drops by 50 percent.
THE NEW SCREENING TESTS: CAN YOU TRUST THEM?
Currently, there is no standard screening test for ovarian cancer. (The Pap test checks for cervical cancer, not ovarian.) But some tests are currently being—or will soon be—marketed to women. They sound like a good idea, but there are reasons to be wary:
1. CA 125 test
Contrary to widely circulated emails, testing your blood for the "tumor marker" CA 125 has not been proven to accurately screen for ovarian cancer, says Andrew Berchuck, M.D., professor of gynecological oncology at Duke University Medical Center. Used to detect recurrence in women who have already had the disease, it yields too many false positives (things other than ovarian cancer can elevate levels of this marker) and false negatives (some research suggests it misses as many as half of all early tumors) to be an effective screening tool. Researchers are aiming to improve the test.
This test may be on the market by the time you read this, but it brings with it serious controversy. OvaCheck uses a breakthrough technology, called proteomics, in which a computer seeks telltale cancer-protein patterns in your blood. In small studies, these "fingerprints" found most early cases of the disease. But the company that makes OvaCheck may sell the test without FDA approval. "We are excited about the premise of proteomics but concerned about a company trying to rush to market before it is fully tested and has proved that it can actually save lives," says Debbie Saslow, Ph.D., director of breast and gynecologic cancer at the American Cancer Society. False positives are a risk, and could lead thousands of women to unnecessary follow-up procedures, including surgery. Even if this test becomes available, only women with a first-degree relative with breast or ovarian cancer should even consider it, and even then, only after a consultation with a doctor.