by Rebecca Farmer
First diagnosed with breast cancer in 1986 when she was 47, Marilyn Zivian has been living with metastatic disease for ten years, after a recurrence in 1996. A trained researcher and former university professor, she’s also the lead author of the new BCA report, Side Effects Revealed: Women’s Experiences With Aromatase Inhibitors.
Marilyn first learned about Breast Cancer Action after meeting Barbara Brenner at an event in San Francisco. She gave a donation and began receiving BCA’s newsletter. The first issue she received featured a cover story about the online survey of aromatase inhibitor (AI) side effects, which caught her interest for several reasons. She decided to look at the survey because she is trained in all kinds of data analyses and was curious if the survey was structured well. On first look, it was clear to Marilyn that the survey was—and her interest grew. Recently retired, she was looking for meaningful volunteer work and e-mailed the BCA office with an offer to help analyze the survey data. On a more personal note, she is currently taking tamoxifen, but has often wondered if she should switch to an aromatase inhibitor.
“I’m Getting Sicker and Nobody Knows What’s Wrong With Me”
Marilyn’s first breast cancer diagnosis came 20 years ago, for which she underwent a lumpectomy, chemotherapy, and radiation. She wasn’t postmenopausal at that time, and was told by her doctors that tamoxifen wouldn’t be effective because there was still too much estrogen circulating in her body, so she didn’t receive any hormonal treatment.
For ten years Marilyn was symptom free. But then she started feeling chest pains that seemed located above her breast bone. At first, doctors thought the problem was gastrointestinal and she was treated with antacid drugs. The pain wasn’t continuous, however—she would have pains, and then feel nothing for six months. Over time, the bouts of pain grew closer together—every three months, and then eventually every week. Her doctors increased the amount of antacid drugs she took and prescribed anti-depressants.
She recalls thinking at the time, “Something is wrong, this doesn’t make sense. I’m getting sicker and sicker and nobody knows what’s wrong with me.” At that point Marilyn was becoming anemic and often feeling very tired. She found a new doctor who sent her for an abdominal ultrasound, thinking that a bleeding ulcer might be the culprit. For some reason, “the technician went up a little higher than she usually would, to investigate a little bit more,” Marilyn says. “She discovered that there was fluid around my heart.”
The doctor sent Marilyn to a cardiologist, who diagnosed her with pericarditis. She was told the condition would go away. By that point she was experiencing frequent low-grade fevers. After seeking a second opinion, another cardiologist suspected pericarditis was not the issue and sent Marilyn for a chest CT scan. The scan showed lesions in her breast bone and ribs. “My bone scan looked like a Christmas tree,” she said, referring to the lesions that light up. Her breast cancer had recurred and metastasized. She had been misdiagnosed for five years.
“They put me on tamoxifen,” Marilyn says, “and I immediately got better.” Her fevers stopped, the tiredness went away, the fluid around her heart decreased, and her bone lesions began healing. The oncology team also told her it was a mistake that they didn’t put her on tamoxifen ten years ago—but that they didn’t know that then.
Living in Toronto at the time, Marilyn sought a second opinion in 2001 from Dr. Hope Rugo at the University of California at San Francisco Medical Center. During that visit, Dr. Rugo told Marilyn that if she had been her patient she would have prescribed an aromatase inhibitor, but that since the tamoxifen was working there was no use changing her treatment. “That was the first time I heard about AIs,” Marilyn recalls. Three years ago, Marilyn moved to San Francisco and became a patient of Dr. Rugo. Ever since, she has wondered whether she should switch to an AI.
Even though Marilyn has experienced no side effects from tamoxifen, “There’s always the threat of uterine cancer,” she says. Additionally, tamoxifen stops working in some women. She undergoes regular bone scans to ensure the drug is still working for her and has periodic abdominal ultrasounds to monitor for signs of cancer developing in her uterus.
“There’s a constant question in my life now of if and when I should switch from tamoxifen,” Marilyn says. “I’ve been on it for 6 years now. They don’t really seem to know what its risks and effectiveness are after 5 years.”
Her decision to volunteer her time analyzing data from BCA’s AI Side Effects Survey grew out of her desire to help others—as well as to see if she could find answers to her own questions about this new class of drugs. “I was interested is seeing what other women were saying about them,” Marilyn says.
Finding the Stories in the Data
Beginning in 1977, Marilyn was a professor of psychology at York University in Toronto, Canada, teaching and doing research with graduate and undergraduate students. Before moving to San Francisco in January 2004, Marilyn had also served as the chair of the Psychology Department, director of the graduate psychology program, and associate dean of the graduate faculty. Her scientific background and university research experience proved indispensable in analyzing the data from BCA’s AI survey.
Marilyn volunteered her time at the BCA office nearly every week for a year, in addition to hundreds of hours of work from home, reading about AIs and reviewing original research on them. Her dedication and drive is as much aimed at helping other women with breast cancer as it is deeply personal. “It’s striking to me how little I know about how I’m treated for my disease,” she notes, particularly for someone with her scientific and research background.
“I was interested in what I could find out for myself that could help me. And it also seemed like a useful thing to do for everybody else,” Marilyn says. “I love doing research, especially when it has to do with people.”
The women who make up the data of the BCA report remain close to her heart. There are stories behind every data set, she explains, stories she wants to ensure are heard.
“The women who answered the survey,” Marilyn says, “I think it’s so wonderful that they did that. Some of them, it’s clear, are really suffering.” As a researcher she’s greatly appreciative and as a woman living with breast cancer she’s deeply moved that women took the time to respond to the survey and to share their experiences. “I really feel for these women, and I feel close to them—that we have something in common.”
Marilyn continues struggling with her own decision around treatment—whether to stay on tamoxifen while it’s working, or whether to switch to an aromatase inhibitor. For her, mining this data was also a part of determining options for her continuing hormonal treatment. She knows first-hand how difficult and confusing this medical decision-making landscape can be.
“I walked around with false ideas,” she says. “I thought if you had cancer, you got pain and the pain didn’t go away.”
Today, Marilyn’s cancer is being controlled, and her bone pain has subsided. Some of the bone lesions are disappearing. Every month she receives an infusion of Zometa, a bisphosphonate drug, to counteract the metastases in her bones—“to keep them from disintegrating,” she describes.
Her hopes for the effect of the BCA report are two-fold: inspiring researchers and reaching out to women with breast cancer.
“I hope that this research will inspire some doctor somewhere to do the research to get answers we need,” she says. “I want others to know what I know now. If people don’t have information, or if they don’t know how good the information is, they don’t know what decisions to make.”
Rebecca Farmer is BCA’s communications officer.