Ovarian Cancer: Not So Silent?

Doctors and cancer advocates have traditionally been at a loss when it comes to making recommendations to women for the early detection of ovarian cancer. Not only is there no effective screening tool, it is not associated with any signature symptom. As a result, ovarian cancer is often called "the silent cancer."

However, this cancer's impact is clearly heard. Every year, approximately 23,000 women in the United States are diagnosed with ovarian cancer and 14,000 die of the disease. It is the fifth leading cause of cancer death for women, but detection at an earlier stage of the disease would help more women live longer. While the five-year survival rates for early-stage ovarian cancer are between 70 and 90 percent, they drop to 20 to 30 percent for women with advanced-stage ovarian cancer.

But there was a glimmer of hope in a 2004 study, published in the Journal of the American Medical Association, that suggested ovarian cancer does give some hints that could help lead to early detection. The researchers found that 95 percent of the participants with ovarian cancer reported symptoms before their diagnoses, including back pain, fatigue, bloating, constipation, abdominal pain and a feeling that they had to urinate urgently.

Below, Dr. Mary Daly, director of cancer prevention and control at Fox Chase Cancer Center in Philadelphia, discusses this study and the importance of weighing these symptoms in context of a woman's individual circumstances.

Why are most woman diagnosed with ovarian cancer in the advanced stages?
"That's a question that I don't think we have an answer to," says Daly. "The traditional thinking has been because it doesn't produce obvious, recognizable symptoms." Since there are no clues the cancer is there, it is allowed to progress into the advance stages.

The other theory has been that it just grows so rapidly that there is a very short period of time when it's at an early stage. Experts still don't really know which of those two theories are true.

Why isn't routine screening for ovarian cancer recommended?
The existing tests, which are primarily ultrasound and a blood test called CA-125, have been studied in a variety of different settings. Unfortunately they aren't accurate enough in early diagnosis of ovarian cancer to be used as a screening test for everyone. They either miss the cancer completely, or on the other hand, they are positive when there is no ovarian cancer. So their accuracy is too inadequate to make them useful as general screening tools.

What symptoms were associated with ovarian cancer in this study?
There were a wide variety of symptoms, including GI symptoms, back pain, bloating and fatigue. This has been a problem all along: There isn't one classic symptom that clues doctors in to ovarian cancer, so there are many mixed symptoms that women experience prior to being diagnosed. "The thing I think that this study showed was that in addition to having these various symptoms, the frequency and the severity of the symptoms are also important," Daly says. "And the symptoms don't come and go; they get progressively worse."

Are these symptoms often dismissed by women and their doctors?
"I think they have been dismissed sometimes because they are symptoms that everybody has from time to time, such as the feeling of bloating or low back pain or crampy abdominal pain," Daly says. It's hard to know when these symptoms signify something different than the usual aches and pains that all women have.

A woman needs to make sure that if she's concerned about a symptom it is not dismissed by her or her doctor. It is also important to be as clear and descriptive as possible about what exactly she's experiencing. A good doctor-patient partnership can really make the difference.

Are there other common conditions that ovarian cancer symptoms can be confused with?
One of the conclusions of the study was that doctors need to know other medical conditions the patient has in order to put the symptoms in context. So it's important that a womanly openly discusses other diseases or conditions she has with her doctor. The study also mentioned that women with diabetes and thyroid disease had more symptoms than other women.

What other factors should be considered when interpreting symptoms?
Age is important, and the age when ovarian cancer becomes more frequent is usually post-menopause, in the 50s and 60s. "I think having a family history of ovarian cancer makes us more suspicious when someone has these complaints," says Daly. "Having one of the two known genes associated with breast cancer increases the potential risk for ovarian cancers significantly, 10- or 20-fold." So there are definitely certain women who are at a higher risk.

The other thing, too, is if someone's complaining of something that they've had off and on for three or four years, it's less suspicious than if a woman comes in and says, "For the last three weeks, I've been having bloating, and I've never had anything like this before." That should make your doctor a little bit more concerned, because it's brand-new.

At what point do doctors usually pursue a workup based on symptoms?
This varies from doctor to doctor. It requires good listening and communication skills and a sense of clinical judgment as to when a doctor should investigate and when a doctor should just observe. "I think this is true in any kind of a symptom evaluation," says Daly, "whether it be in a woman, where you're worrying about ovarian cancer, or a man where you're worrying about prostate cancer." Physicians need to listen very carefully, know their patients well to put the symptoms in context to see if this is something unusual that they need to pay attention to, or if this a common syndrome that this person has off and on. So it's very hard to put into scientific terms.

So using only symptoms for diagnosis is not the perfect solution. For the women who have symptoms and evaluated further, they may have early-stage ovarian cancer. However, there are still a lot of women not meeting the screening criteria who may in fact have ovarian cancer.

If someone has suspicious symptoms, what is the next step in diagnosis?
There aren't good intermediate tests that doctors or patients can always rely on in the case of ovarian cancer. Once a woman has a high enough index of suspicion to go further, she should have the CA-125 test and an ultrasound, but they aren't always effective. Doctors sometimes have to go all the way to a very invasive stage, even of perhaps exploratory surgery.

What is the CA-125 test?
It's a blood test, and it detects a protein that ovarian cancer cells produce and discharge into the bloodstream. The problem with it is other conditions also can produce CA-125 and be responsible for the rise. Appendicitis, liver disease, endometriosis or kidney disease can all cause a rise. Even pregnancy can cause a rise in CA-125. So it's a protein that's not exclusive to ovarian cancer, and this is one of its downfalls.

Why isn't ultrasound always effective?
"I think the biggest problem with the ultrasound is missing things," says Daly. If a doctor finds something and it looks complex, it's usually significant and needs to be removed. If it looks like a simple cyst, then you have some reassurance it could be something besides cancer.

What do you think the study results offer women and doctors?
"I think it validates the notion that there are symptoms and that ovarian cancer is not necessarily a silent disease," Daly says. So women will be more attentive to what's going on in their bodies, report symptoms to their physicians when they're concerned, and that physicians will pay attention to the symptoms.

Do you think earlier diagnosis for ovarian cancer is a possibility?
Doctors are still working to find better screening tools that will, in conjunction with symptom reporting, advance this whole field of diagnosing ovarian cancer. "We still have a way to go," says Daly, "but there's a lot of active research going on in that area, and there's hope that there will be some advances in the next couple of years."

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