Page 87 - MBCA_FULL REPORT_FINAL_FOR_WEB

Photo: Living Beyond Breast Cancer’s 2014 Eighth Annual Conference for Women with Metastatic Breast Cancer

Webinars are another important source of information and often cover new research and
treatments. Organizations such as Living Beyond Breast Cancer and SHARE (Self-Help for
Women with Breast or Ovarian Cancer) have webinars on results of MBC studies from major Helplines to assist
symposia, such as the American Society of Clinical Oncology meeting and the San Antonio MBC patients:
Breast Cancer Symposium. Programs on practical matters in living with MBC, such as financial CancerSuportCommunity
issues, are also available in this format, which allows for replay. 1-888-793-9355
Living Beyond Breast
Nearly half of Alliance member organizations provide telephone support services, all of which Cancer
assist MBC patients in some capacity, even if just to refer them to other telephone helplines. 888-753-LBBC (5222)
Few telephone support services focus specifically on MBC patients; the ones that do include Susan G. Komen
those by the Cancer Support Community, Living Beyond Breast Cancer, Susan G. Komen, and 1-877 GO KOMEN
SHARE. Data collected on the use of helpline services by MBC patients is very limited. Most
have live counselors during business hours and, at other times, callbacks within 24 hours. SHARE
866-891-2392
Nearly half the services use professional counselors; the rest use breast cancer survivors as
counselors. Some helplines provide follow-up calls and/or matched mentors. All the helplines
have Spanish-speaking counselors; several have counselors and/or translators available in
other languages. Challenges for helplines include how to broaden awareness and utilization
of services, how to retain well-trained counselors (especially for MBC patients), and how to
manage technological problems with the telephone system.

Information for HCPs
Alliance members provide information and support to educate patients about their cancer
and treatment options, which helps to empower patients in their conversation with health care
professionals. However, oncologists and general practitioners often face their own obstacles
in their communication with MBC patients. Information developed by Alliance members could
be very helpful to providers, so both parties have a shared basis on which to discuss diagnosis
and treatment. Web and print materials of members are not currently geared toward assisting
providers in these tasks.

87