Hot topics in breast cancer this Spring from LBBC

Spring Advisory: Caring for Unique and Underserved Populations


HAVERFORD, PA., Feb. 26, 2015 (GLOBE NEWSWIRE) -- This spring, Living Beyond Breast Cancer (LBBC) releases research, hosts events, and publishes guides that help inform and support individuals who may experience challenges based on sexual orientation, gender identity, disease subtype and age following a breast cancer diagnosis. We are available to arrange interviews with LBBC professionals and people affected by breast cancer to help your audiences understand and take advantage of these valuable resources.

LGB: Support for Difficult Conversations

For many lesbian, gay and bisexual people diagnosed with breast cancer, coming out to members of their healthcare team can be difficult or scary. To assist them, LBBC has published original content in a guide that provides information, support and resources designed to help make having these conversations easier.

Getting the Care You Need as a Lesbian, Gay or Bisexual Person is the first in LBBC's new Breast Cancer inFocus series, which complements LBBC's longer guides about medical treatment and the physical and emotional side effects of an early-stage or metastatic breast cancer diagnosis. In addition to the physical brochure, LBBC.ORG features additional content for LGB individuals and profiles of people living and coping with breast cancer. The website also offers information for members of the transgender community. "For me, it's really important that I click with my therapist, my oncologist, primary care doctor, podiatrist—any healthcare provider," says Stephanie Joseph in a story featured on LBBC.org's award-winning blog. "If someone is taking care of you, I think it's important you feel comfortable with that person, especially when you are dealing with breast cancer."

"To be sexually active and fighting breast cancer in the LGBT world is really difficult," says Susan Di Pronio in another blog on LBBC.org. "After this diagnosis and treatment, it's tough to feel that you're attractive, desirable and here for the long haul. It's not easy to allow yourself to feel deserving of being physical and intimate with other women. It takes courage, but it does get easier."

Triple-Negative Breast Cancer: Acknowledging Greater Fear, Anxiety

LBBC will host a one-hour Twitter chat on Triple-Negative Breast Cancer Awareness Day, Tuesday, March 3, 2015 from 8-9 pm (ET). The chat will help those diagnosed with this type of breast cancer to better understand treatment options, address their emotional concerns and get practical tools to enrich daily life. Follow the Twitter Chat of eight noted oncologists and cancer support professionals with the hashtag #LBBCchat.

"Triple-negative" refers to disease subtypes that lack the three receptors known to fuel most other forms of breast cancer: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). Triple-negative breast cancers are typically responsive to chemotherapy, but not to the more modern treatments that target these receptors. For this group of women, the lack of any therapies proven effective in preventing recurrence can cause high incidences of anxiety.

To investigate the psychosocial needs of this population, LBBC built a team of researchers from leading breast cancer centers and organizations across the country and presented findings in poster sessions at the San Antonio Breast Cancer Symposium (SABCS) in December 2014.

"To our knowledge, no one had ever conducted research to see whether women with triple-negative breast cancers have unique needs, and we found that they do," says LBBC CEO Jean A. Sachs, MSS, MLSP.

Investigators found that women who have been diagnosed with TNBC have a significantly stronger preference for information tailored to their cancer subtype and experience greater fear, anxiety and worry at all points from diagnosis through treatment.

Of all breast cancers diagnosed, 10–20 percent are triple-negative, and among African American women, there is a 30 percent chance that a breast cancer will be triple-negative. Women who test positive for the BRCA1 gene mutation, premenopausal women, and young African-American and Hispanic women are also more likely to be diagnosed with TNBC. LBBC decided to pursue research funding for the studies after working with the Triple Negative Breast Cancer Foundation on the LBBC Guide to Understanding Triple-Negative Breast Cancer.

SOFT Trial: Young Women Weigh Risk, Side Effects and Dreams of Family

Researchers at SABCS also presented results of the Suppression of Ovarian Function Trial (SOFT) showing that ovarian suppression, when combined with chemotherapy and an aromatase inhibitor, reduced the risk of recurrence for some women with early-stage hormone-positive breast cancer.

It's good news, but could lead to challenges for diagnosed women who are premenopausal that include balancing risk, side effects and family planning. As part of LBBC's Young Women's Initiative, a program funded by Centers for Disease Control and Prevention, LBBC held a special webinar to help answer questions on these concerns.

A podcast of the January 13, 2015, webinar features Ann H. Partridge, MD, MPH, a member of LBBC's Medical Advisory Board and Director of the Program for Young Women with Breast Cancer at Dana-Farber/Brigham and Women's Cancer Center, in Boston, MA. These complex decisions need to be tailored to a woman's type and stage of cancer, her particular risk, her life goals, and her tolerance of therapy, Partridge says. Women can suffer hot flashes, bone pain, sleep disturbance, vaginal dryness and lack of libido and they must feel comfortable discussing these issues with their doctor.

Tracy, 26, a full-time nursing student in Dallas, is single and hopes to have a family one day. For now, she is taking Lupron for ovarian suppression and tamoxifen, and has minimal side effects. "I know this is best for my survival," she says, taking comfort that she can change her treatment course in the future. "I'm taking it one day at a time," she says. "It doesn't get easier; you just get stronger."

Metastatic Breast Cancer: Support Lies in Connection

LBBC has opened registration for its ninth annual conference for women living with metastatic breast cancer (MBC) on April 11–12, 2015, at the Loews Hotel in Philadelphia. At the conference, LBBC will launch its "Hear My Voice" Outreach and Volunteer Training Program with a training seminar for 25 people living with stage IV disease.

The program is another resource developed by LBBC research surveys specific to the metastatic community, who may often be unaware of programs and resources designed exclusively for them. Women living with MBC can feel outside the mainstream conversation, with heightened concerns about long-term survival and greater interest in clinical trials and newer therapies. Studies show that participation in peer outreach programs can improve emotional health and promote a greater sense of well-being.

Those accepted into the training will gain a better understanding of MBC, the information and resources available and ways to communicate and connect with similarly affected people in communities across the United States.

"We sent an e-blast about the training program to our constituents on February 12th and by the 16th we had more than 60 applications," says Catherine L. Ormerod, MSS, MLSP, LBBC's Vice President of Programs and Partnerships. "We know we have tapped into a large, unmet need; women with metastatic breast cancer have a story to tell and they want to make a difference by helping others."

There are approximately 152,000 people in the United States living with metastatic (or stage IV) breast cancer, which occurs when cancer cells from the breast spread to another part of the body such as the lungs, bones, liver or brain. Between 5 and 8 percent of initial breast cancer diagnoses are metastatic. However, about 30 percent of women first diagnosed with an earlier stage of the disease will develop metastatic disease.

About Living Beyond Breast Cancer

Living Beyond Breast Cancer (LBBC) is a national nonprofit organization whose mission is to connect people with trusted breast cancer information and a community of support. Founded in 1991, LBBC addresses the needs of people affected by breast cancer, whether they are just diagnosed, undergoing treatment, living with a history of breast cancer or managing a metastatic form of the disease. Resources are carefully developed in collaboration with the nation's leading oncologists, health professionals and ally organizations and delivered by those who understand the physical and emotional complexities of breast cancer. LBBC offers its programs and services online, in-person, by phone and in print.

For more information, visit LBBC.ORG.