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Experts, survivors share invaluable information at breast and ovarian cancer seminar in Carmel Valley

By Kristina Houck

Carmel Valley resident Naomi Whitacre had been a seemingly healthy 54-year-old when she fell ill with a 103-degree fever. Her doctor suspected appendicitis and insisted she get to the hospital immediately.

An MRI of her abdomen revealed a cantaloupe-sized tumor that had formed around a fibrotic ovarian cyst. Three days later, doctors removed the growth, which turned out to be stage 2C ovarian cancer.

“We’re very good about diagnosing our friends, our children, our husbands, our sisters, our cousins, our aunts, our uncles, our mother and our father, but we’re really bad about tracking ourselves.” said Whitacre, a 12-year ovarian cancer survivor who shared her story during a breast and ovarian cancer seminar Feb. 11 at the Church of Jesus Christ of Latter Day Saints in Carmel Valley. She, along with surgeon Dr. Michele Carpenter, genetic counselor Sandra Brown and breast cancer survivor Lynn Flanagan talked about breast and ovarian cancer risks, lifestyle modifications, symptoms, detection and treatment options.

Prior to her diagnosis, Whitacre had been experiencing back pain, which could be a sign of ovarian cancer. Other signs include bloating, pelvic or abdominal pain, and trouble eating or feeling full quickly.

Because there is no early warning diagnostic test for ovarian cancer, Whitacre encouraged women to pay attention to their bodies. She suggested women track their symptoms by downloading a diary app from Ovarian Cancer National Alliance’s website at www.ovariancancer.org/app.

“When we talk to medical students, when we talk to nurses, we talk to them about our personal experience because that’s all that we have,” she said. “Without an early warning diagnostic test, it really is folklore.”

About 20,000 women in the United States are diagnosed with ovarian cancer each year, according to the Centers for Disease Control and Prevention. Ovarian cancer causes more deaths than any other cancer of the female reproductive system, but it accounts for only about 3 percent of all cancers in women. In 2010, 19,959 women in the U.S. were diagnosed with ovarian cancer, and 14,572 died from the disease, according to the CDC.

Breast cancer is much more common. Aside from non-melanoma skin cancer, breast cancer is the most common cancer among women in the U.S., according to the CDC. In 2010, 206,966 women and 2,039 men in the U.S. were diagnosed with breast cancer, and 40,996 women and 439 men died from the disease, according to the CDC.

Although more information is known about breast cancer, tests are not always accurate.

At 43 years old, Flanagan visited her doctor for a routine mammogram. The test did not detect cancer. Her nurse discovered two lumps during a physical exam.

“Despite the fact that the mammogram was clear, despite the fact that the fine-needle aspiration biopsies did not pick up any cancerous cells, after doing the lumpectomy, we found out that I did, in fact, have cancer,” Flanagan said.

The Carmel Valley resident launched a breast cancer support group, Linked by Lynn, 16 years ago. She has organized more than a dozen breast cancer seminars in the last 15 years.

“I am now 17 years a survivor and I feel absolutely blessed for the fact that my cancer was discovered so early. I believe that God had a plan for me in that early discovery — that was to continue to reach out into the community to educate people about this disease, to emphasize the importance of early detection and the importance of being your own advocate.”

Most breast cancers are sporadic. That means that every woman has about a 12 percent chance of developing breast cancer, said Brown, the manager of the Cancer Genetics Program at St. Joseph Hospital and Mission Hospital in Orange, Calif. Every woman has about a 1.5 percent change of developing ovarian cancer, she added.

A woman has a 15-30 percent moderate or familial risk of developing breast cancer if she has a history of the disease in her family. A woman could have up to an 85 percent risk if she has a genetic mutation or inherited risk.

Genetic counselors, Brown said, can analyze a woman’s family history, try to make accurate risk assessments, use genetic testing and recommend additional and individualized risk management.

She encouraged attendees to talk to a genetic counselor if they are concerned about their family history.

“When you see a genetic counselor, we try to connect the patterns to see if there’s something that we need to look into further,” Brown said. “A genetic counselor might tell you, ‘You don’t really need to be here,’ but that’s not such a bad thing to hear.”

Brown noted about 5-10 percent of breast cancer cases are thought to be hereditary, meaning that they result directly from mutations inherited from a parent.

Because of her history of ovarian cancer, Whitacre decided to have genetic testing in 2009. Her decision likely saved her sisters’ lives, she said.

She learned that she carried the BRCA1 gene, which has been tied to hereditary breast and ovarian cancer. Whitacre immediately had a double mastectomy.

Both of her sisters also tested positive for the BRCA1 gene and had their ovaries removed. When her youngest sister had her ovaries removed, doctors discovered high-grade fallopian cancer.

“I was shocked, honestly shocked, that I had the mutation,” Whitacre said. “But as the result of that, my two sisters were diagnosed.”

The genetic mutation is a risk factor for breast and ovarian cancers. Other risk factors for ovarian cancer include being middle-aged or older; having a family history of ovarian cancer; having a history of breast, colon, uterine, cervical or ovarian cancer; having an Eastern European (Ashkenazi) Jewish background; never giving birth or having had trouble getting pregnant; and having endometriosis.

Risk factors for breast cancer include being a woman; aging; having a family history of breast cancer; having a personal history of breast cancer; having more menstrual cycles due to starting menstruation early or going through menopause later; having no children or having a first child after age 30; and using hormone therapy.

Another risk factor is having dense breast tissue.

Many breast cancers, like Flanagan’s, do not show up on a mammogram. Breast density can make a developing cancer hard to detect and also increase a woman’s risk.

Gov. Jerry Brown in 2012 signed a law that requires health care facilities to notify women categorized as having dense breast tissue about their condition. The law, which went into effect April 2013, is designed to improve breast cancer detection and prevention by educating patients about dense breast tissue and how it could conceal possible abnormalities during mammographic procedures.

The law doesn’t require health care facilities to specify how dense the tissue is, however. Therefore, Carpenter also encouraged women to be advocates for themselves, and to request additional information is they receive a letter stating they have dense breast tissue.

“You have to take control of your life,” said Carpenter, program director of the Breast Program at The Center for Cancer Prevention and Treatment in Orange, Calif. “You need to find out what it means, what your mammogram looks like and how dense it really is. … Surveillance is important.”