The University of Washington School of Nursing

The Enhancing Connections Program offers you either Program A or B:

Program A:
Specially developed educational material mailed to you at your home along with an educational phone call from a specially trained patient educator.

Program B:
A visit every two weeks for a total of five, with a specially trained patient educator in your own home.

If you participate in the study, you will be randomly assigned to one of these two programs. Both programs offer you an opportunity to learn new ways to assist your school age child with the breast cancer.

• Have a first time diagnosis of breast cancer (Stage 0, I, II, III)
• Were diagnosed in the past 6 months
• Are married or in a stable partnered marriage
• Have an 8-12 year old child who is aware of your diagnosis
• Can speak and read English

The Sister Study is a long-term study in the United States of women aged 35 to 74 who have sisters with breast cancer. This study is funded by the National Institute of Environmental Health Sciences (NIEHS), one of the National Institutes of Health (NIH).

The Sister Study will investigate the influence of genetic, environmental, and lifestyle factors on the risk for breast cancer and other diseases in sisters of women with breast cancer.

The online survey was designed by the Patient Advocate Subcommittee of the CALGB and consists of questions about your treatment for cancer and whether you entered a clinical trial as a part of your treatment. The results of the questionnaire will be used to help patient advocates better understand how patients learn about cancer treatment options so that cancer patients can be better informed.

The CALGB is a national clinical research group sponsored by the NCI. It is currently a national network of 29 university medical centers, over 185 community hospitals and more than almost 3000 physicians who collaborate in clinical research studies aimed at reducing the morbidity and mortality from cancer.

Breast cancer has several distinguishing characteristics in young women compared to older women.

Washington University School of Medicine in St. Louis, MO has initiated a new research program, Identification of Novel Genetic Factors that Contribute to the Risk of Breast Cancer, specifically for young women with the disease. The goal is to identify genetic factors that contribute to breast cancer initiation and progression among young women. Identification of these factors may lead to improved diagnosis, treatment, and hopefully one day the prevention of breast cancer among young women.

In support of this research, we are encouraging members of the YSC community to consider participating in this program. To be eligible to participate, you must have been diagnosed with invasive breast cancer by 40 years of age.

Women who participate will be asked to:

• have a blood sample drawn,
• release their cancer related records,
• provide family history information, and
• may be asked to invite their parents to participate as controls.

You do not have to live in St. Louis in order to participate; all study related materials can be mailed to you. All information gathered in the study will be kept confidential. Your participation will benefit the ongoing research and care of young women with breast cancer.

Researchers at Purdue University are conducting a study to learn more about how individuals use the Internet for activities related to breast cancer and how Internet users appraise online breast cancer information. The goal of the study is to help establish a better understanding of how the Internet may best be used by breast cancer advocates.

The lead researcher is eager for members of the YSC constituency to participate, as she wants to ensure that young and ethnically-diverse women are well-represented in this vital study.

Participation is completely voluntary and anonymous. To fill out the online survey, click here.

If you have any questions concerning this research study or difficulties completing the electronic survey, please contact Yumary Ruiz at 765-496-6024 or yruiz@purdue.edu.

Dana Farber Cancer Institute in Boston is planning to study the long-term effects of breast cancer chemotherapy on the ovaries of young women. While many young women continue to have periods after they receive chemotherapy for breast cancer, their ovarian function may not be as robust as it would have been if they had not received chemotherapy. The research plans to compare standard measures of ovarian function in breast cancer survivors who have received chemotherapy to young women who have not received chemotherapy.

Researchers are looking for breast cancer survivors who received chemotherapy as treatment, and are also asking if survivors have a friend or sister without a history of breast cancer who is interested in participating in this study (this is not a requirement for study participation).

• Currently between the ages of 18-42
• One year out from diagnosis
• Have regular menstrual periods
• This study is being conducted in Boston, MA. Participants may live anywhere in the country, but a visit to the specialist in Boston will be required.

SPIRIT is open to any African-American breast cancer survivor who:

• Was diagnosed at least one year ago or longer with localized breast cancer
• Is not currently on chemotherapy (taking tamoxifen or other hormone pills is OK)
• Is not currently receiving radiation therapy
• Is not having breast reconstruction surgery within the next six months
• Can speak and read English
• Lives within commuting distance of a counselor

Visit: www.mdanderson.org/departments/spirit/

Janice Workcuff
jeworkcuff@mdanderson.org

Laereen Lyght
LFLyght@mdanderson.org

Toll-free number: 1-87-SPIRIT85 or 1-877-747-4885

Approximately 5-10% of breast cancer is hereditary. Syndromes of breast cancer susceptibility have been linked to mutations of at least two genes, BRCA1 and BRCA2. Women who are found to have a mutation in BRCA1/2 are at increased risk of developing breast and/or ovarian cancer in their lifetime. Genetic counseling/testing is often recommended for women at elevated risk for breast cancer. There are a number of benefits associated with genetic testing, including that the information can help women decide what they can do to possibly prevent the disease or to detect it at earlier, more curable stages. However, there are also a number of risks associated with testing, including the possibility of insurance discrimination. Women considering testing need to understand the risks and benefits of testing for them and to make decisions regarding testing, which are both informed and consistent with their personal goals and needs. In addition, women need to understand complex genetic and medical information (e.g., probability of being a mutation carrier) before making their decision.

The Departments of Human Genetics and Oncological Sciences are collaborating on several studies to evaluate different genetic counseling formats for hereditary breast-ovarian cancer. The goals of these studies are to examine various methods to help women make more informed decisions about their healthcare. Although, genetic counseling is provided to assist women with their testing decision, some women may need additional assistance with their decision, because less is known about BRCA1/2 mutations in certain populations and, because of cultural heritage, the benefits and risks of genetic testing may be more complicated.

There are three open studies:

• The Telephone Counseling Study (TALK) [GCO #03-0970]
  A number of women may not have access to genetic counselors with necessary expertise about BRCA testing or cannot attend a face-to-face visit due to physical limitations (e.g., metastatic disease). The goal of this study is to examine the efficacy and impact of genetic counseling provided over the telephone. Experienced genetic counselors developed a protocol for telephone counseling that mimics in-person genetic counseling as closely as possible. Participants are randomized to receive in-person counseling or telephone counseling. Women in the telephone-counseling arm receive a counseling manual with visual aids prior to their initial consultation. While the patient is responsible for the cost associated with genetic testing, genetic counseling is provided at no cost and the genetic counselor will facilitate genetic testing for all interested participants.
• Culturally Tailored Counseling for Women of African Descent (TACT & GATE) [GCO #01-0371, #00-0730]
  African-American women may have unique concerns about genetic testing (e.g., discrimination, medical mistrust) that may not be directly addressed in a "standard" genetic counseling session. The goal of this study is to examine the efficacy of two different culturally tailored counseling interventions. Women are randomized to one of three arms: 1) "standard" counseling followed by a CD-ROM based BRCA1/BRCA2 genetic testing decision aid; 2) culturally-tailored counseling that specifically addresses issues that may be culturally important; or 3) "standard" genetic counseling. Study participants receive genetic counseling and the option of genetic testing for BRCA1 and BRCA2 at no cost.
• The Parent Communication Study (PCS) [GCO #02-0076]
  PCS is a pilot study assessing parental intention to share genetic information with their adolescent children.

Please contact Ms. Nidhi Kapil-Pair or Ms. Eileen Farrell at 212-659-8213 to refer potential participants. All information is confidential.