A 'catch-22 cancer' that silently kills women

A 'catch-22 cancer' that silently kills women If deadly disease is detected before it spreads, women have a 90-per-cent chance of survival Karen Gram Vancouver Sun

September 26, 2005

1 | 2 | 3 | NEXT >> CREDIT: Ward Perrin, Vancouver Sun Diane McCormack has survived ovarian cancer, a disease she never thought about previously.

Diane McCormack could not understand why she was down with pneumonia for the second time in five months. She had never been one to get sick and, except for the births of her two children, she'd never been hospitalized.

She was gaining weight too, but at 52, that was no surprise.

"I was just thinking I was redistributing everything. But what did I know?"

What McCormack, a public health nurse with years of health promotion and illness prevention behind her, didn't know is that she had ovarian cancer.

Often called the silent killer, ovarian cancer could also be known as the "catch-22" cancer.

That's because the chances of curing women of it increase greatly the earlier it's detected, but because 96 per cent of women don't recognize the symptoms, it's rarely caught early enough.

The symptoms -- most commonly abdominal bloating, indigestion and abdominal pain. But changes in bowel function, unexplained weight gain, nausea, infertility or changes in menstruation patterns are so vague, women tend to disregard them or attribute them to their monthly cycle or to perimenopause. So do many doctors, says Dr. Gavin Stuart, a Vancouver gynecological oncologist.

"The irony is that this disease, if it is picked up early, can be treated successfully. There is a good chance of curing it," says Stuart.

"But the question is, how does one pick it up early? Women and practitioners don't think about it. The challenge facing women and practitioners is thinking about it."

McCormack admits she certainly never thought about it. She'd given numerous lectures on cervical, lung, colon and breast cancers, but never on ovarian.

"It just wasn't on the radar," she says.

Adding to the odds stacking up against early detection is the fact that there is no effective tool to screen women for ovarian cancer. A pap smear only screens for cervical cancer. And unlike breast cancer, there is no telltale lump a woman can detect when the tumour is on the ovary, says Stuart.

While ovarian cancer isn't as common as breast cancer -- one woman in 70 faces a risk of developing it in their lifetime compared to one in seven for breast cancer -- it is the most fatal of the gynecological cancers, killing 1,500 women every year. About 2,400 get diagnosed in that same time period.

McCormack was diagnosed with stage two ovarian cancer after an ultrasound spotted a tumour on each of her ovaries. She had a full hysterectomy and her prognosis is good.

If it's caught in the first or second stage, when the cancer hasn't spread beyond the pelvis, women are given a 90 per cent chance of survival.

Unfortunately, 70 per cent of women aren't diagnosed until stages three and four when the cancer has spread to the abdomen and then the liver.

At these later stages, the survival rate drops to a low of 20 per cent.

Elizabeth Ross, executive director of the National Ovarian Cancer Association, says those numbers are why the association is conducting an awareness campaign.

"If we can increase awareness about the disease then many women would be diagnosed sooner and ultimately the mortality rate would drop," she said in a phone interview from Toronto.

Stuart says the best tool for early detection is a pelvirectal exam, but few doctors routinely do this. Some, like McCormack's doctor do a pelvic exam as part of a physical, but it is only with the rectal that the doctor can assess the ovaries. A normal pelvic exam only checks out the cervix.

McCormack's pelvic exam did not include the rectal and did not find the tumour. But McCormack still credits her doctor with the early diagnosis.

Seven months after she had the pelvic exam, McCormack returned to the doctor saying something was seriously wrong. She'd gone through a second bout of pneumonia and still couldn't shake a high level of fatigue.

Her doctor listened and ordered a host of tests. The last one, an ultrasound, found the cause. Bilateral ovarian cancer.

"I am very very fortunate I was diagnosed at stage two and so much of that is due to my doctor's ability to listen and be so proactive for me, verses not proceeding with full assessment," says McCormack. "I told her she saved my life."

It's not surprising that a diagnosis of ovarian cancer hadn't occurred to McCormack. Except for being over the age of 50, she had none of the risk factors associated with the disease -- she had two children, is not an Ashkenazi Jew, didn't take fertility drugs and has no family history of cancer.

Stuart explains that the predisposition for ovarian cancer is either genetic or related to the frequency that a woman ovulates. The more often, the higher the chance of developing ovarian cancer.

"Thus a woman who has been on birth control pills for 20 years and thus never ovulates, is very low risk as is the woman who has had nine births, since she wouldn't be ovulating during any of the pregnancies," he says.

"But a woman on repeated treatments of fertility drugs who may produce two or three eggs per cycle has a potentially higher risk, though science still hasn't determined how big that risk is."

Women who have any of the risk factors should get an ultra-sound as part of their annual checkup, recommends Stuart.

But so far, science has failed to come up with a good screening tool for women who don't have the risk factors. The ultrasound gives too many false positives. One study of 805 high-risk women screened with an ultrasound found 39 tumours. Each of those had surgery, but only one turned out to have cancer. Pet scans, CT scans and MRIs are all too expensive.

A blood test which measures a protein called CA 125 is a useful diagnostic test because CA 125 levels are elevated in the majority of women with stage 3 and 4 ovarian cancer. But the test is less reliable in detecting early stage ovarian cancer as CA 125 is only elevated 40 to 50 per cent of the time in women with stage one disease. In addition, CA 125 is also elevated as a result of a number of benign conditions such as endometriosis.

McCormack had the blood test and it showed her levels were only slightly elevated, suggesting that her tumours were benign. Had her doctor made that assumption and stopped there, McCormack doubts she would still be alive today.

Stuart says that while ovarian cancer isn't funded as fully as some other more high profile cancers, the lack of a screening tool is also due to the complicated nature of the disease. Considering that treatment for ovarian cancer is a full hysterectomy and for those in the later stages, chemotherapy, an accurate test is essential. No one wants women to go through such radical therapy for a benign cyst.

"They are trying to find a test that is both sensitive enough and specific enough and that only gives a positive when cancer is there and that if it's positive it isn't due to anything else," he says.

In the meantime, McCormack says women have to learn to protect themselves from this disease.

"Listen to your body," she says. "Be very watchful of changes. My friend calls it listening to the whispers of the body.

"This group of symptoms looks like a bad day at the office," she says, noting the bloating she experienced resembled being three to four months pregnant, a fairly common weight gain at 50. "But the thing is it doesn't go away. It's not cyclic bloating, this stays and the fatigue is not what you are used to." At later stages the bloating can look like seven to eight months pregnant.

Speak to your physician and learn to be heard, she advises. "If you aren't heard, go to another physician."

Stuart says that if the symptoms don't go away in three weeks, see your family doctor and insist on a pelvirectal exam. "It's the only way to assess the ovaries."

McCormack has been cancer free for six years. She feels blessed that her cancer was caught early.

She has made it her mission to open the door behind which this silent killer has been lurking for so long.