Jewish Journal

Groups offer hope and support for advanced breast cancer patients

by Francesca Lunzer Kritz

Posted on Oct. 4, 2007 at 8:00 pm

Elizabeth Edwards. Photo by Yuri Gripas/AFP/Getty Images

Elizabeth Edwards. Photo by Yuri Gripas/AFP/Getty Images

Ever since Elizabeth Edwards, wife of Democratic presidential hopeful John Edwards, announced that her breast cancer had recurred and was treatable, but not curable, breast cancer organizations have been fielding questions from women -- both from cancer patients and from women worried that if breast cancer does strike, it might also hit them in its most severe form.

News reporters have challenged Edwards' optimistic interviews. But experts applaud her upbeat attitude. While every patient is different, women with advanced breast cancer can often do very well if the cancer has spread only to the bone. Advancing to other organs could mean a shorter life expectancy, but, again, every case is different and women respond differently to therapies.

Once advanced breast cancer is diagnosed, women will often get hormone therapy such as the drug Tamoxifen or a drug from a class called aromatase inhibitors. Chemotherapy could also be added, as could radiation -- although radiation would often be used to relieve pain, not necessarily to shrink a recurrent tumor, said Dr. Michael Naughton, a breast cancer oncologist at Siteman Cancer Center of Washington University School of Medicine in St. Louis.

Surgery, said Naughton, often isn't an option because it's more effective to treat the cancer systemically -- that is, throughout the entire body, which can be done with drugs.

Generally, one in four women will develop a recurrence of breast cancer, but there is good news on the drug horizon. The Food and Drug Administration (FDA) has approved the drug Tykerb (generic name: lapatinib), to be used in combination with capectabine (Xeloda), another cancer drug, for patients with advanced, metastatic breast cancer that is HER2-positive (tumors that exhibit HER2 protein). According to the American Cancer Society, about 180,000 new cases of breast cancer are diagnosed each year, and about 8,000 to 10,000 women die from metastatic HER2 positive breast cancer each year.

"[This] approval is a step forward in making new treatments available for patients who have progression of their breast cancer after treatment with some of the most effective breast cancer therapies available," said Dr. Steven Galson, director of the FDA's Center for Drug Evaluation and Research. "New targeted therapies such as Tykerb are helping expand options for patients."

Maintaining an optimistic outlook requires support, a point Elizabeth Edwards made in interview after interview, referring to her husband, friends and other family members.

Sharsheret, a national organization of cancer survivors dedicated to helping Jewish women facing advanced breast cancer, last year launched a new program called Embrace. According to the program coordinators, Embrace helps women deal with treatment options, pain management, quality of life, talking with family members and friends, and feelings of emotional isolation. Embrace offers individual counseling sessions by phone with Sharsheret's staff counselor, as well as a telephone-based support group connecting women with health care professionals and with each other.

"Embrace, like all other Sharsheret programs, provides resources and support by telephone to ensure that it is as convenient as possible for the women of Sharsheret," said Elana Silber, the group's director of operations.

Silber said that research conducted by Sharsheret found that general resources and support available to women living with advanced breast cancer were extremely limited. "We found that women living with metastatic breast cancer wanted support that was customized to their individual experience," Silber said.

"What differentiates advanced breast cancer from the earlier stages is fear of the unknown, pervasive in many areas including treatment, prognosis, family and religious beliefs," Embrace program coordinator Shera Dubitsky said. "Speaking with a trained clinician addresses the unique concerns instigated by the extraordinary circumstances of women living with advanced breast cancer, while participation in the support group gives women a chance to share their overlapping anxieties and their common resources."

While many people have expressed surprise at Elizabeth Edwards' optimism, her mood is not unique among people with advanced breast cancer. Elka, a 38-year-old New Yorker and the mother of several children under 13, had a recurrence of her breast cancer several years ago and is "looking forward with hopefulness," she said. "There are hundreds of people who pray for me, and I am grateful for their help."

"In the terror of it all, there is a positive aspect, and I would not have known that in the beginning," Elka said in a phone conversation.

Elka's treatment has included surgery, chemotherapy and hormone drugs to try to keep the cancer at bay. But over time, doctors found that the cancer had spread to her spine and brain, and she began chemotherapy again along with radiation to treat pain. She admits to some side effects but said, "I'm grateful I'm able to do the regular mother stuff. I so badly want to be alert and emotionally there for my kids -- wake them, put them to bed, homework. I am their mommy. And, in this journey of cancer, I have been the mother."

Elka and her husband have been in therapy to help them cope, through Chai Lifeline and Sharsheret. Elka says she has learned coping skills, how to let her children be children rather than want to be with them every minute, how to enjoy what they can do together -- for example, going to a park instead of an amusement park.

"I'm going to be happy to buy a suit for my son's bar mitzvah, but I'm trying not to ask myself if I will be able to wear it," she said. "That helps me cope."

For more information on Sharsheret's program, visit www.sharsheret.org or (866) 474-2774. For more information on Chai Lifeline, visit www.chailifeline.org. For information on advanced cancer, visit www.getbcfacts.com.

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