In August 2013, Jewel Figueras, 51, returned to South Florida from vacation with severe pain in her stomach. That’s when she found out she had ovarian cancer. “I was diagnosed by accident, as most women are,” she says. She was told in the hospital she had diverticulitis, and then: “But did you know there’s a huge lump on your ovary?”
Shock was Figueras’ first reaction: “You’ve just told me I have ovarian cancer,” she recalls. “I don’t know what to do with that. There’s not a place for me to put it in my brain.”
Ovarian cancer is a daunting diagnosis. Each year, about 22,000 new cases occur in the U.S., and about 15,000 women die from it. Women past menopause are at highest risk, and risk increases for women with close relatives with the disease. Here are some early questions to ask while coming to terms with a diagnosis of ovarian cancer:
Are you sure? The work-up for the diagnosis is by an imaging test — by an ultrasound, CT scan or both — and a blood test called a CA-125, explains Karen Lu, chair of gynecologic oncology at the MD Anderson Cancer Center in Houston, and “most of the time — unfortunately, about 75 percent of the time — women present with ovarian cancer with symptoms of bloating and increase in the size of their abdomen,” Lu says. “And when they get imaging by their physician, they have very advanced disease.”
But other times, the diagnosis isn’t so obvious. A biopsy or surgery is needed for definite diagnosis, she says.
[See: 10 Questions Doctors Wish Their Patients Would Ask .]
What type of ovarian cancer do I have? Ovarian cancers are classified by where the tumor first developed in the ovary — in the cells of its covering layer (epithelium), in the egg-producing cells or in the hormone-producing cells — along with other subtypes. Malignant epithelial ovarian cancer is the most common.
What kind of doctor should I see? Your doctor should be a board-certified gynecologic oncologist — a doctor who specializes in cancer of the female reproductive system, Lu says.
“We’re an unusual specialty that includes both surgery and chemotherapy,” says Leslie Randall, a gynecologic oncologist with University of California Irvine Health. “Because the disease is so complicated, and sometimes the chemo and surgery go hand in hand, it’s really important to have somebody who knows both sides of the coin to be involved in their care.”
Where do I go for care? A big cancer center is ideal, Randall says, but if you don’t have access, then the best thing is to locate a gynecologic oncologist in the community.
Lu says it’s important to ask doctors or a medical group about their experience and approach, with questions such as: “Do you do this on a regular basis?” “Are there any innovative approaches?” “Do you offer any clinical trials?” and “Does your group have a particular focus on ovarian cancer?”
What is my treatment plan? Most patients start with surgery followed by chemotherapy once they’ve recovered, although some women need chemotherapy first. The extent of treatment needed may not be known until the woman is actually on the operating table and the pathologist has analyzed her tumor.
[Read: Can You Afford Your Cancer Care? ]
What is your surgical approach? Survival odds are better when all the cancer is removed during tumor-debulking surgery. “We have a very specific goal — which is no residual tumor,” Lu says. That’s why you want your doctor to use maximal cytoreductive effort.
With advanced ovarian cancer, instead of one big tumor, many small tumors are spread throughout the abdominal cavity, Randall explains. “‘Cytoreductive’ means removing all those little tumors,” she says. “It’s a labor-intensive type of surgery, but it helps people live longer the more you remove.”
[See: 10 Changes in Surgery in 25 Years .]
How do you give chemotherapy? A major marker of good ovarian cancer care is whether women have access to intraperitoneal chemotherapy, Randall says. With intraperitoneal chemo, drugs are injected directly into the abdominal cavity through a thin catheter, rather than being given intravenously. While not all patients are good candidates for this method, she says, it’s considered the standard of care. “A lot of women don’t get peritoneal therapy because they’re going to a provider who doesn’t give [it],” she says. “It’s a wrong reason not to get peritoneal therapy.”
What about chemo side effects? Side effects depend on the type of drugs you receive, and you should have an idea what to expect. Figueras was surprised at how debilitating her side effects were. At first, “I was gung-ho to go to my chemotherapy,” she says. “In my mind, I was going to have it on [each] Friday; I was going to be sick all weekend — and then I was going to be fine again. And nothing could be further from the truth.”
Do you offer clinical trials? It “absolutely” is important to be at a place that offers clinical trials, Lu says. Even if you don’t choose to be in one, you may want to hear about those research studies, which can give you a chance to receive the newest treatments for your condition.
[Read: Why You Should Gather Your Family Health History .]
What if I don’t have access to care? Patients can connect to resources and specialists nationwide through the Society of Gynecologic Oncology website, Randall suggests. “There’s a lot of patient information — good information, because a lot of information on the Web is not good,” she says. The society also has a patient advocate to help women find providers.
What about emotional and social support? “You need to find those people who are going to be there for you,” Figueras says, and she’s lucky to have a “fantastic” support system in her family, her blog community and her Facebook friends.
“I have a friend who is a chef who called me and couldn’t really offer anything but food. So he would provide my lunch for me on chemo days,” she says. “My very first chemo … he actually sent over a lobster tail.” For peer support and information, she turns to the Ovarian Cancer National Alliance.
[See: How to Be a Good Patient Wingman .]
Do I need to make decisions right away? When you’re diagnosed, Lu says, “It’s very scary, and you feel like ‘I have to deal with this thing tomorrow.'” But it’s worth taking your time to make sure you find a doctor “who is experienced and also someone that you trust, that you have a good relationship with,” she says, rather than feeling you have to rush into something.
Within a month is a reasonable time frame to pick a provider and get started, both experts agree. However, Randall adds, “You really don’t want to spend a whole lot of time in that process. The sooner you get to treatment, the better the outcome will be in the long term.”
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12 Questions to Ask When You’re Diagnosed With Ovarian Cancer originally appeared on usnews.com
