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Cancer Awareness: Women Should Be Cognizant of Symptoms, Seek Early Treatment

Posted on: Monday, 26 September 2005, 15:00 CDT

Nicole Anderson's son, Sage, was only 6 weeks old when doctors found a lump on her uterus during a routine checkup.

But she was young and healthy, and everyone figured it was left over from the pregnancy. Six weeks later, same thing, but this time they did an ultrasound. They checked it every three months for a year and a half.

Doctors told her she was too young and healthy for cancer and that the lump wasn't growing. It was likely nothing. If it was a sarcoma, she remembers being told, you'd be dead by now. Those are too aggressive.

A year ago, when it started to hurt a little, a surgeon removed it. It looked like endometriosis, she was told, and assured that she'd be fine.

Four days later, the pathology report told a different story. The young woman had a loving husband, a darling baby and a rare and potentially deadly form of uterine cancer called endometrial stromal sarcoma.

Dr. Karen Zempolich, a gynecologic oncologist at the Huntsman Cancer Institute, can rattle off statistics that are frightening and occasionally calming about gynecologic cancers, which include primarily ovarian, uterine and cervical cancers, with a few much less common cancers like that of the fallopian tubes.

Uterine cancer

Uterine cancer is the most common, with between 40,000 and 45,000 cases diagnosed each year in America. About 8,000

women die each year. The most common symptom, she said, is abnormal bleeding. After menopause, any bleeding is considered abnormal, but one-fourth of cases appear before then, so any change in periods could be significant. Since bleeding is an early symptom as much as 95 percent of the time, someone who pays attention, seeks help and is persistent can be diagnosed early, and most patients are. Three-fourths of cases are caught at stage one.

Trouble comes, more often, when a woman "doesn't listen to that symptom or puts off having it figured out," Zempolich said. "Women deprioritize themselves and take care of what the rest of the family needs. Symptoms may go a few months, instead of jumping right in to say this is not normal."

That's bad, since at stage one, there's an 85 percent cure rate overall, typically accomplished by removing the uterus, ovaries and tubes. Doctors may also stage lymph glands and if there are other risk factors, radiation may follow the surgery.

Factors that increase the risk of developing uterine cancer include "inappropriate estrogen use." That's not the same as structured, monitored hormone replacement therapy. But estrogen should not be taken without progesterone. "If you have a uterus, there has to be a balance between the two," Zempolich said. Some nutritional supplements, like black kohosh, cause high inappropriate estrogen exposure.

The other big risk is obesity. When someone is overweight as little as 10 pounds, cells can convert into estrogen and increase risk. Losing weight has other health benefits and decreases the risk of uterine cancer.

Ovarian cancer

About 25,000 American women are diagnosed each year with ovarian cancer, which is the most lethal of the cancers of the female reproductive tract, said Zempolich, who noted sadly that 16,000 women die each year. More than half those diagnosed with ovarian cancer will die, largely because it's difficult to diagnose, the symptoms subtle but never silent, she said.

The problem lies in the symptoms: bloating, gas, diarrhea, constipation, abdominal pains. Women can think they have irritable bowel problems or acid reflux. The telling fact is that the symptoms persist and get worse; they never ebb and wane.

Still, the vast majority of women are not diagnosed for months. About two-thirds are diagnosed in advanced stages of the cancer. It's diagnosed with a pelvic exam and ultrasound or a CT scan. When it's detected early, survival is 85 percent or better, but most cases aren't.

Ovarian cancer is also a hitchhiker, flaking off and floating through the abdomen to spread elsewhere, perhaps coming to rest on the surface of the bowel or the stomach.

The most important thing, in terms of survival, is that first surgery to remove the cancer. And that's one reason that experts say women should consult specialists who see that type of cancer a lot. Gynecologic oncologists are trained to be patient and search out the wandering cancer cells. Cancer cells that aren't removed are a life- stealer.

That's a hard message to get across because no one wants to offend a doctor who thinks he or she can handle it. So only 39 percent of ovarian cancer patients see someone who specializes in ovarian cancer in Utah -- and the number is even smaller in rural areas.

"If a woman can get the right surgical care up front, there's as much as a 25 percent increase in survival," Zempolich said. Part of the problem is Utah has only four such specialists. Some nearby states have even fewer.

Cervical cancer

The Pap smear, to detect cervical cancer, is one of the great success stories of medicine. Most women diagnosed with irregularities are in the early stages of disease, with an expected cure rate exceeding 99 percent.

Usually, it's not even treated surgically. Radiation is used about two-thirds of the time. And the annual American death toll is "well under 4,000." But that's too many, given they are preventable deaths, Zempolich said.

Pap smears should begin when a female becomes sexually active or at age 21 and continue annually to age 30, then they can be done every other year. If there are any precancerous changes, it should be done every year.

Scientists are developing a vaccination against the human papillomavirus (HPV), which is present in 90 percent of sexually active adults and is believed responsible for most cervical cancer, although there is a definite subtype not driven by HPV. Those who become sexually active when they're young seem to be at greatest risk of the effects of the virus.

In a novel treatment advance, the cervix can be removed but the uterus left in place for future childbearing, although only a few centers including Zempolich's offer such a surgery.

If ovarian cancer is a hitchhiker, cervical cancer is a walker, creeping to the tissue next door. It can spread to the lymph nodes and then farther afield, but it's more often found in the bladder, rectum and ligament support close by. Conversely, uterine cancer spreads more often through the lymph nodes and blood stream, Zempolich said.

When Anderson's sarcoma was diagnosed, she didn't know what the year would bring. Treatment has been aggressive, including a hysterectomy and removal of dozens of lymph nodes. She's had eight surgeries, some very major and some relatively minor.

The problem, she's been told, is too much estrogen, so she has to avoid it in any form she can, but that's easier said than done. It's in food and pesticides. Part of the reason it took a while to diagnose her, she was told, is that she didn't fit the profile. She's not overweight, she's young, she had no warning symptoms.

Now 31, she just had a CT of her lungs, abdomen and pelvis, and there's no trace of cancer. But she knows that it can recur. She was fortunate in that she had a low-grade, slower developing form of the cancer. She takes a drug normally prescribed for breast cancer that helps block estrogen production. And she attends a support group at Huntsman for women who have been diagnosed with gynecologic cancer. There, she learns how others have coped with the diagnosis and the down days. And she has found, both there and among her family and friends, "a lot of love and support."

Sean Patrick doesn't fit the profile for gynecologic cancer, either. She was diagnosed at age 44 with ovarian cancer. A doctor told her that age should not be what people rely on. That doctor treated a young woman who was 19.

"It's a myth that it's a disease of elderly women with no children," said Patrick, founder of HERA, named after a Greek goddess fond of shaking up the status quo, but it stands for Health, Empowerment, Research and Advocacy. "I was insanely fit, mountain biking 15 miles a day. I went to a doctor complaining of extreme fatigue and digestive problems. I knew something was wrong."

Given her age, the doctor ran standard blood tests. She had no family history of any cancer. The first doctor told her she was a "driven type A" personality and needed to get a hobby. She fired him and got a new doctor.

"We feel, as women, we have to stay with the same doctor. No, you don't. Get a second opinion, get a third opinion. And if you have to go to 10 different doctors before one takes you seriously, go to 10 different doctors."

She was diagnosed nine months later, which is about average with ovarian cancer. Unfortunately, it's a fast-moving disease, so the time it takes to diagnose is "the difference between early stage and late-stage cancer."

Her own research, which was extensive, convinced her that chemotherapy would not help the rare form of tumor she had. She asked a specialist why people kept recommending chemo and was told "they don't know what else to do with you," she remembers.

Instead, she and her doctor became partners in the search for a clinical trial that made sense for her. It bought her more than two years of remission before she had a setback and more surgery.

In HERA, she hears from women who had surgeries and whose doctors said they could mop up errant cells with chemo. "A new study out shows surgery has a 50 percent greater impact over the length of survival than chemo," Patrick said. "Who does the surgery is critical."

Sadly, with late diagnosis, she said, the lost life for women who have ovarian cancer is 20 years, compared to nine years' lost life for men with prostate cancer.

Patrick believes her case is typical of the future of cancer care. She still has ovarian cancer, but it's stable, unchanged for four years. "I'll take it."

She believes that with new biologics, in the next five to 10 years it will be possible to maintain a lot of cancers more as a chronic disease than as a killer.

Recently, Huntsman Cancer Institute, the Utah Cancer Action Network and Intermountain Health Care announced they would be collaborating more on both research and smoothing the way to patient access to care. Part of that is seeing that patients consult the right doctors. Right now, under 30 percent with ovarian cancer see gynecologic oncologists. With uterine cancer, it's under 19 percent.

"Cancer can be overtreated and it can be undertreated," Patrick said. "Why be really ill if you don't have to be? But you need someone who knows the disease well and has seen it often."

Women know their bodies, she said, and if something seems wrong, "you have to be a squeaky wheel, your own advocate."

E-mail: lois@desnews.com

Source: Deseret News (Salt Lake City)

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