Breast Cancer Survivors, Caregivers Come Together

Symposium Offers Hope, Inspiration, New Understanding

By Judy Benson

Hartford — During a moment between presentations of medical studies, research findings and PowerPoint slides, two women who'd never met struck up a conversation about breast cancer.

“Are you a survivor?” one asked the other.

The second nodded.

“Me, too,” said the first.

“Good for us,” the other replied.

Throughout the “Survive and Conquer” symposium at the Connecticut Convention Center Thursday exchanges like this could be heard in the hallways and lecture halls. The symposium, the first major effort of its type by the Susan G. Komen Breast Cancer Foundation's Connecticut affiliate, brought together an unusual mix of about 500 medical professionals, breast cancer patients, survivors and researchers.

“Nine years ago this very day, it was confirmed that not only did I have breast cancer, but that I would have to undergo chemotherapy and a mastectomy,” said Claudia Weicker, symposium chairwoman and wife of former Gov. Lowell P. Weicker Jr., offering one of the many personal stories told to introduce expert speakers and inspire the audience.

“One of the main reservoirs from which I derived strength came from other women who had been diagnosed,” she said.

She told of a friend who came to her house “with a reading list and a handkerchief,” and others who told her where to buy a wig, how they felt after waking up from mastectomy surgery and looked at themselves in the mirror for the first time.

“I realized I could do this,” she said. “The network was too busy living each day to be victimized by this disease.”

Attendees came not only for the messages of hope and inspiration, but also to learn how the mysteries of breast cancer are gradually being unraveled. Breast cancer is the most common type of cancer among American women. About 1 in 8 are at risk of developing the disease, with 274,900 new cases diagnosed each year, according to the American Cancer Society.

Breast cancer survivors now number about 2.2 million.

“In the last 20 years, there has been tremendous growth in our understanding of the disease,” said Lindsay Harris, associate professor of medicine and director of the Breast Disease Unit at the Yale School of Medicine in New Haven. “Previously we thought of breast cancer as one disease, but it's really multiple diseases.”

Molecular profiling of breast tumors through extraction of RNA is a powerful new tool being used to identify which of the five types of breast cancer a patient has, which types of medications will work best, and whether chemotherapy and surgery will be needed, she said.

New breast cancer patients, she advised, need to make sure that their doctor has pinpointed the exact type and treatment to match.

Another Yale cancer expert, Dr. Michael DiGiovanna, told about promising laboratory research he is conducting that combines a drug that blocks one of the body's growth hormones with the estrogen-blocking drug Tamoxifen, commonly used in breast cancer patients, or Herceptin, which blocks a different cancer-causing hormone from binding to cells.

“Wisely chosen combinations have a promise to improve treatment,” he said. “None of these drugs alone killed cancer cells (although they did slow their growth). But in combination they killed cells.”

He is hoping to begin clinical trials with some of these new drug combinations on patients in the next year or so.

Diagnostic tools also are being developed. At Harvard Medical School, a new test that screens urine for residues of a particular enzyme is showing promising results at early detection of breast cancer, said Dr. Marsha Moses of the Harvard Department of Surgery. The enzyme is found in the bloodstream and is associated with enabling the creation of new capillaries that supply tumors and spark their growth, she said.

New imaging tools that may also enhance early and more precise detection include digital tomosysthesis, which creates layered pictures of the breast, CAT scans designed specifically for the breast, and ultrasound-guided optical tomography, which looks for concentrations of blood flow associated with cancer cell growth, said Dr. Jennifer Logan, director of breast imaging at Hartford Hospital.

Advances have also been made in determining the role of genetics and developing tests for genetic predisposition for breast cancer, but scientists believe other factors also are responsible for causing breast cancer. One of these may be light, said Dr. Richard Stevens, cancer epidemiologist at the University of Connecticut Health Center in Farmington. His research is based on the observation that breast cancer rates are higher in the most industrialized nations of the West, where modern habits of getting little natural light during the daytime and spending nights in brightly lit spaces is most prevalent.

“Modern life, with dimly lit days indoors and lighted nights is a big change in our environment,” he said. People naturally produce more of the sleep hormone melatonin when they spend more time in deeper darkness, he said, and studies are showing a relationship between melatonin levels and breast cancer.

“This is far from proven,” he said, “but the evidence is growing. I would recommend getting a dark night and living a melatonin-friendly lifestyle.”

Other lifestyle factors that can reduce breast cancer risk and improve chances of recovery include regular moderate exercise, such as a brisk 30-minute walk five times a week, avoiding weight gain after menopause and a low-fat diet, said Dr. Jennifer Ligibel of the Harvard Medical School and the Dana-Farber Cancer Institute.

“These are things we all have some degree of control over,” she said.

•••••

One growing area of cancer research involves breast cancer survivors, a phenomenon credited to vocal and visible organizations like the Komen Foundation, noted Julie Rowland, director of the Office of Cancer Survivorship at the National Cancer Institute.

“Loud and clear,” she said, “the research is telling us that there is a remarkable resilience” among those who've had the disease, but that doesn't mean that their lives ever return to the way they were before cancer struck. They may experience long-term fatigue or pain, memory loss, psychological and spiritual changes and have to learn to live with long-term anxiety about recurrence.

“The challenge is finding a place to park it,” she said of the anxiety.

But the research also shows that, despite these effects, many survivors say they gain a new appreciation for life “and an increased sense of self-esteem.”

“They say, 'I didn't think I could get through this, but I did, and I'm proud of myself,' ” Rowland said. “Survivors are also telling us that they want to know what to do about their health going forward, what their exercise level should be, what they should eat, whether they should get religion, what should they read. People make profound changes about who they are and want to be.”

The key factors in successful recovery, she added, are being able to express both negative and positive feelings, continuing to exercise during treatment, having a social support network, having a sense of purpose and meaning in life, being an active participant in one's own care and tapping into the best care.

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