When Survivors Perform Science: About Lucy Berlin
Preserving fertility after breast cancer treatment prevails as one of the orphan areas of breast cancer medicine. Whether because of concerns that pregnancy after breast cancer affects long-term survival or because of the small numbers of young patients available for research study, medical evidence has mounted slowly.
The persistence and courage of young survivors like Lucy Berlin are fueling progress in this area, in some unexpected ways.
Lucy Berlin set forth to document how young breast cancer patients are affected by the risk of early menopause or infertility due to chemotherapy —and to find out whether there's a way to avoid ovarian damage in the first place.
And she didn't have to look far for funding.
Ms. Berlin teamed with Dr. Hope Rugo, a breast cancer oncologist at the University of California, San Francisco, and Dr. Lynn Westphal, a reproductive endocrinologist at Stanford University who has a special interest in cancer patients.
Their CBCRP-funded pilot project, “Chemotherapy Induced Ovarian Damage: Prevention and Impact” is a Community Research Collaboration Award, a type of award that encourages research collaborations among community members, scientists, and physicians.
Lucy was diagnosed at the age of 36, when her son Erik was 23 months old. Two years after an aggressive neoadjuvant regimen of Adriamycin, Cytoxan, and Taxol, she was told she was post- menopausal. She grieved, but to her satisfaction became pregnant four months later with her son Colin, now three years old.
Lucy is the leader of the “Young Moms with Breast Cancer,” a Palo-Alto based support group for mothers of young children, also known as the “Moms' Group.” These young women share ideas on the parenting, relationship, and health concerns common to women dealing with breast cancer, young children, and often-sudden menopause.
“Young women often want to keep the option of becoming pregnant after breast cancer,” Lucy observed. “These days women often start families in their 30s. For some young women, the thought of infertility or menopause after chemotherapy is devastating and adds insult to injury.
The sudden onset of menopause can cause insomnia from night sweats, sexual problems, and drop in bone density.”
As the first part of the pilot, Lucy and the team developed a survey to study issues identified by young survivors, such as what information women received about side effects and their options for minimizing damage, how young women with breast cancer made their decisions, how their menstruation and fertility were affected, and what factors influenced their attitudes and decisions.
Lucy, an anthropologist, will be interviewing a sample of survey respondents to get a more in-depth understanding of their experiences and attitudes around these issues.
At the same time, the investigators will prospectively test the observation that the use of hormone suppressing agents (called gonadotropin releasing hormones, or GnRH agonists) to shut down the ovaries may reduce ovarian damage from drugs such as cyclophosphamide (often known as Cytoxan). GnRH agonists are an established treatment for young women with hormone receptor-positive breast cancer.
Since Cytoxan seems to be a key culprit in ovarian damage, this team consisting of a breast oncologist, an infertility specialist, and an anthropologist worked together to design a Phase II clinical trial to explore whether using the GnRH-agonist triptorelin during chemotherapy might reduce the damage from common cyclophosphamide-containing regimens (e.g. FAC, AC/Taxol, or CMF).
The pilot study will enroll 30 women between the ages of 35 and 44—women who are more likely to develop infertility or menopause after standard chemotherapy. Patients will get triptorelin two weeks before chemotherapy and for the duration of treatment. Their levels of FSH and estradiol will be monitored during and after chemotherapy to check for ovarian function. The CBCRP grant will pay for added tests for the participants, and the maker of triptorelin will supply the drug free of charge.
The trial opened in mid-January at UCSF, San Francisco General, and a few other clinics in the San Francisco Bay Area. However, other local oncologists are welcome to join, so that young patients may be able to enroll even if they choose to be treated by other community oncologists.
Despite fears common to women and physicians, pregnancies after breast cancer don't seem to worsen a woman's chance of long-term survival. However, possibly because of these fears and because infertility is less visible than nausea or hair loss, fertility concerns and menopause effects are often glossed over.
“Even women who were done childbearing often wish they hadn't gone through menopause because of concerns for osteoporosis, hot flashes, mood swings, libido changes, and vaginal atrophy,” said Lucy. “We're hoping that if the GnRH-a regimen proves protective, it might be of interest to many young women whether or not they are interested in a future pregnancy. The study aims to measure this type of interest and to show oncologists what information women want to know.”
Contact Lucy Berlin at firstname.lastname@example.org or at 408-366-0161.
Source: California Breast Cancer Research Program Newsletter Spring 2003
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