21 Months with My Mom

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Glimmers of Hope

Ovarian cancer is relatively rare: About 21,880 new cases were diagnosed this year, according to the National Cancer Institute, and about 13,850 deaths were reported. "It's the most lethal gynecological cancer because more than 70 percent of patients are diagnosed at an advanced stage," says Johnathan M. Lancaster, MD, director of the Department of Women's Oncology at the Moffitt Cancer Center, in Tampa. The cancer is rarely caught early because women often mistake the symptoms for something else or ignore them. If the cancer has metastasized (usually spreading to the abdomen, lymph nodes, or other parts of the body, as Janice Alexander's had), five-year survival is less than 30 percent.

Early Detection

There's no mammogram or Pap-test equivalent for ovarian cancer, but now there's reason for hope: New research from the MD Anderson Cancer Center as well as a large trial in the United Kingdom show that watching your levels of CA-125 (a biomarker in ovarian-cancer patients used to check for therapy response and recurrence) over time shows promise as a screening tool. Based on your age and blood test score, your doctor would place you in either a low-, intermediate-, or high-risk group. The low-risk group would come back in a year for a follow-up blood test; the intermediate group would repeat the blood test in three months; and the high-risk group would be referred to a specialist for a transvaginal ultrasound test. "This may allow for an earlier diagnosis of ovarian cancer, while it's still possibly curable," says Barbara A. Goff, MD, director of gynecologic oncology at the University of Washington.

Until this approach is tested further and put into practice, which could take years, awareness is best, says Dr. Goff. The old thinking is that the disease has no symptoms. "Ovarian cancer had been called the silent killer," she says. "But that's been completely debunked by work that I and others have done."

Be Aware of Symptoms

Patients whose early-stage ovarian cancer is diagnosed (which probably happens by accident while they're having some other surgery or procedure) often report that they actually did have some early symptoms, says Dr. Lancaster. The medical community may be dismissive of common symptoms, so it's vital that women advocate for themselves. Dr. Goff advises that if you have any of the following symptoms, especially if you're over age 50, you should see your doctor for a pelvic exam, a CA-125 blood test, and a transvaginal ultrasound:

  • Persistent bloating, or having your stomach swell up, similar to how you feel right before your period ("This is not normal after menopause," Dr. Goff says).
  • Difficulty eating, or feeling full quickly after a regular-size meal, which can lead to unexplained weight loss.
  • Pelvic pain or abdominal pain.
  • Change in bowel function, such as constipation or diarrhea.
  • Change in urinary symptoms, such as frequency or urgency.

"The symptom should be new to you, something you've had for less than a year," Dr. Goff explains. "For most ovarian-cancer patients it's something they've had for a few months. And it's a symptom that occurs frequently, daily or every other day. If you've had it for 20 years it's probably not ovarian cancer."

-- Julie Bain

What You Can Do to Prevent Ovarian Cancer

  • Taking birth control pills, especially for five to 10 years, can lower the chance of developing ovarian cancer by up to 50 percent, says Dr. Lancaster. "Anything that reduces the number of times you ovulate decreases your risk." That also includes pregnancy and breastfeeding.
  • Tubal ligation and hysterectomy can also lower your risk. While these procedures aren't done for that purpose alone, it is a fringe benefit.
  • If you're at high risk because of a family history or because you have a mutation of the BRCA1 or BRCA2 gene, having your ovaries and Fallopian tubes removed prophylactically reduces your chance of getting ovarian cancer by more than 90 percent.

Help and Support

  • The Ovarian Cancer National Alliance (ovariancancer.org) has a downloadable symptom diary under "Resources." The organization has helped teach students in 81 medical schools so far about the early symptoms of ovarian cancer through a program called Survivors Teaching Students: Saving Women's Lives.
  • Find medical information, news about ovarian cancer and how you can help make a difference at the National Ovarian Cancer Coalition (ovarian.org).

What Happens Now?

Follow along as Amanda Wolfe, a senior editor at LHJ, continues her emotional journey through the aftereffects of her mom's death, and share your own experiences with ovarian cancer, too, at lhj.com/amanda


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