New Advice on Ovarian Cancer Symptoms

Three major cancer organizations are announcing new advice on ovarian cancer describing symptoms women may experience early on, as reported in yesterday’s New York Times. In the past, women have been advised that ovarian cancer often does not produce any noticeable symptoms until the cancer is relatively advanced and much harder to treat. The situation is further complicated by lack of a screening test (such as the Pap for cervical cancer).

However, researchers have recently described a set of symptoms that women should watch out for:
-bloating;
-pelvic or abdominal pain;
-difficulty eating or feeling full quickly;
-feeling a frequent or urgent need to urinate.

The organizations, the Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, are recommending that women especially pay attention to these symptoms and see their doctor if the symptoms occur nearly every day for more than a couple of weeks, and if it is different from how they normally feel (because other conditions can cause some of these same symptoms).

The CDC reports that in 2003, 19,871 women were diagnosed with ovarian cancer in the U.S., and 14,657 women died of the disease. Researchers hope that by identifying these symptoms and diagnosing and treating cancer early, women will have a better shot at survival, although it may be too early to know whether that will happen.

One item in the New York Times article that particularly stood out was this section:

In a survey of 1,700 women with ovarian cancer, Dr. Goff and other researchers found that 36 percent had initially been given a wrong diagnosis, with conditions like depression or irritable bowel syndrome.

“Twelve percent were told there was nothing wrong with them, and it was all in their heads,” Dr. Goff said.

I tracked down the study Goff is referring to, and it appears to be Goff BA, Mandel L, Muntz HG, Melancon CH. Ovarian carcinoma diagnosis. Cancer. 2000 Nov 15;89(10):2068-75. In this paper, Goff asserts that “survival rates for women with early stage ovarian carcinoma range from 70%-90% compared with 20%-30% for advanced disease,” suggesting that ignoring symptoms or telling women that it’s “all in their heads” could have a devastating impact on their survival.

For the study, researchers distributed surveys to readers of CONVERSATIONS!, a newsletter about ovarian cancer, asking about the symptoms women with the disease experienced prior to diagnosis, how long they had those symptoms, when they first saw a healthcare provider about them, and the date their ovarian cancer diagnosis was made. The last two questions were asked in order to calculate how long it took from the time women showed up with symptoms to the the time they got a correct diagnosis. The women were also asked about what type of provider they saw, what tests were ordered, their perceptions of barriers to prompt diagnosis, and other related questions.

1,725 surveys were returned to the researchers from 46 states and Canada. There is a lot of detail in the article about the survey results, and I don’t want to go into all of it here. I should note that it’s possible that women remembered or reported some of the information incorrectly, as it wasn’t checked against their medical charts for verification of the dates and exams performed.

In response to the question, “Before your diagnosis of ovarian cancer was made, what did your health care provider think was wrong?” women gave the following answers:
-13% were told nothing was wrong
-6% were diagnosed with depression
-12% stress
-6% constipation
-15% irritable bowel
-9% gastritis
-47% were given other diagnoses
Only 20% were initially told that ovarian cancer was a possible cause of their symptoms.

Goff’s comment that 12% were told it was “all in their heads” seems to refer to the “stress” findings. However, combining the first 3 categories, almost 1/3 of women were told the problem was in their heads, as in, nothing was wrong, or it was stress or depression.

Regarding barriers to diagnosis, 22% said they ignored their symptoms, 30% reported wrong diagnosis, 21% reported health care provider attitude as a problem, 6% had difficulty getting an appointment, and 25% reported other barriers. Additionally, 33% of the women saw 3 or more healthcare providers before the ovarian cancer diagnosis was made.

It makes sense that given the prior lack of understanding that early ovarian cancer may cause symptoms, that many women ignored them or received a wrong diagnosis. However, nearly 1/5 experienced a problem with health care provider attitude, and I tend to think that telling women they’re just stressed out is also a provider attitude problem.

This is a real sore spot for me, given the difficulties I experienced having my thyroid condition diagnosed. So tired that I wanted to be tested for mono? Oh, it’s just stress. Resting heart rate of 120? That’s a panic attack. So tired I can’t bring myself to walk downstairs to go to bed or shower? “You’re tired? Go ask my nurses, they’re all tired, too.” Through sheer persistence and luck, I found an endocrinologist who took me seriously when I said, “This is not normal for me.” It appears that many women go through just this struggle in trying to get ovarian cancer diagnosed, and that is a shame. With this new validation of women’s symptoms by major cancer organizations, perhaps women will be taken more seriously when they present with the symptoms listed above, and will be informed and empowered to raise the issue with their clinicians. Bottom line: when something isn’t normal for you, insist on being taken seriously.

Resources:
-What you need to know about ovarian cancer – National Cancer Institute
-Specific symptoms may signal ovarian cancer – American Cancer Society
-Ovarian Cancer National Alliance Salutes First National Consensus on Ovarian Cancer’s Symptoms – Ovarian Cancer National Alliance (thanks to OCNA policy director Cara Tenenbaum for the heads up)
-MedlinePlus: Ovarian Cancer – National Library of Medicine
-Goff BA, Mandel LS, Melancon CH, Muntz HG. Frequency of symptoms of ovarian cancer in women presenting to primary care clinics. JAMA. 2004 Jun 9;291(22):2705-12.
-Goff BA, Mandel LS, Drescher CW, Urban N, Gough S, Schurman KM, Patras J, Mahony BS, Andersen MR. Development of an ovarian cancer symptom index: possibilities for earlier detection. Cancer. 2007 Jan 15;109(2):221-7.