Abstracts / The Breast 20 (2011) S12–S55S54

array of therapies, all of which are toxic in one way or another. Adverseeffects may be short term or long. How is this dealt with currently?From the patient/advocate perspective we see ONLY a medical/pharma-ceutical approach. But the prevention and treatment of adverse effects -which we characterize as the UNWANTED effects, not SIDE effects, can bedealt with using complementary modalities in many cases.We suggest these are tried first. Giving someone a pill to stop a problemgenerally leads to more problems, more issues for their weakened bodies.It no longer seems acceptable to us to cause harms for people you knowyou cannot ‘cure'. Given that the current level of treatment is consideredpalliative, it is necessary to expand the adjunctive products used.Studies have been done for years on the value of OTC dietary supplements,Traditional Chinese Medicine, exercise, relaxation techniques and muchmore. Very few will rise to the level of randomized clinical trials - thusnever making it onto the medical doctors' radar screen. Yet there is a largebody of evidence to suggest (strongly) that these methods are very muchworth using, especially among these patients.An example would be glutamine: Glutamine Supplementation in CancerPatients Receiving Bone Marrow Transplantation and High Dose Chemo-therapy Journal of Nutrition. 2001;131:2578S-2584SAt a time when many institutions were offering high dose chemotherapywith bone marrow transplantations - a completely unproven treatment,this paper came out.Or Synergistic Anti-Cancer Effects of Grape Seed Extract and ConventionalCytotoxic Agent Doxorubicin Against Human Breast Carcinoma Cells BreastCancer Research and Treatment 85 (1): 1-12, May 2004Part of their findings: ".results suggest a strong possibility of synergisticefficacy of GSE and Dox combination for breast cancer treatment, inde-pendent of estrogen receptor status of the cancer cell".While researching for this abstract, we found this intriguing study:Combination Therapy of Active Hexose Correlated Compound (AHCC) PlusUFT Significantly Reduces the Metastasis of Rat Mammary Carcinoma,Anti-Cancer Drugs 1998, 9, 343-350 K. Matsushita, et al., (University Schoolof Medicine, Laboratory of Pathology, Cancer Institute, Hokkaido) 1998.We will showmore studies on a variety of ideas to reduce/avoid the harmsof conventional cancer treatment for those with advanced breast cancer.First do no harm.

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THE METASTATIC BREAST CANCER NETWORK: A PROACTIVE VOICE OFTHOSE LIVING WITH METASTATIC BREAST CANCER

Shirley MertzMetastatic Breast Cancer Network, New York, N.Y., USA

History: The Metastatic Breast Cancer Network (MBCN) is an independent,patient-led, nonprofit advocacy group dedicated to the unique concerns ofwomen and men living with metastatic breast cancer. It was founded bytwo metastatic breast cancer patients who felt isolated and excluded fromthe breast cancer community because theywere in constant treatment andincurable. Despite many obstacles and with pro bono legal help, MBCNbecame in 2004 an official 501 (c)(3) non-profit organization witha powerful mission.Mission: The Metastatic Breast Cancer Network strives to help those livingwith Stage IV disease be their own best advocate through providing thelatest education and information on treatments, research and coping withthe disease. The organization also works to be the visible voice of meta-static breast cancer patients within the breast cancer community, themedical community, the research community and the public at large.Methods: After establishing a presence in New York City from 2004 to2006, MBCN founders organized the first Metastatic Breast CancerConference at Memorial Sloan-Kettering Cancer Center in 2006. Withinthree weeks of the conference a website < mbcnetwork.org> was builtand MBCN membership grew to 350 by the end of 2006.To put a face on metastatic disease, members petitioned mayors andgovernors in the United States to declare October 13 as Metastatic BreastCancer Awareness Day.Accomplishments: Four National Metastatic Breast Cancer Conferenceshave been held: Memorial Sloan-Kettering Cancer Center, 2006; MD

Anderson Cancer Center, 2007; Dana Farber Cancer Institute, 2009; andIndiana University Cancer Center, 2010. The fifth national conference willbe on October 29, 2011 at Johns Hopkins Cancer Center.MBCN created a free kit for those newly diagnosed. Nearly 11,000 kits havebeen sent to oncologists and clinicians in the United States and around theworld. The medically reviewed kits include Questions To Ask Your Doctor,Clinical Trial Q & A, Glossary, Standard Treatments, Pain Management, andResources. These can be ordered for free or downloaded from the website.The organization's website continues to expand with important informa-tion about support groups for metastatic patients, videos and audios fromthe four conferences, news and information about metastatic breast cancerand treatments, and patient stories. Membership has grown to nearly 2000patients, caregivers, and advocates from the United States, Canada, anda number of foreign countries.Future Challenges: MBCN continues to expand the voice of metastaticbreast cancer patients within the breast cancer community and the publicat large, especially during breast cancer awareness month.Resources are needed to expand research on what causes cancer cells tobecome metastatic.Research needs to find more targeted treatments that will extend thepatients’ lives and make metastatic breast cancer a truly chronic disease.

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PARTNERINGWITH PATIENTS: WHAT DOCTORS NEED TO KNOW ABOUTPATIENT EXPERIENCE OF ADVANCED BREAST CANCER

Tamara Hamlish 3, Eve Elting 2, Dikla Benzeevi 11Patient Advocate, Los Angeles, CA, USA2Patient Advocate, Truth or Consequences, NM, USA3Patient Advocate, Chicago, IL, USA

Background: Advances in breast cancer diagnosis and treatment since1990 have resulted in increasing incidence of breast cancer and decliningmortality. Emphasis on early detection and early intervention fail toaddress the fact that up to 30% of node-negative and up to 70% of node-positive breast cancer patients will experience a recurrence. The lack ofstatistical information on this population points to a more general lack ofattention to the specific experiences of women living with metastaticcancer. In this exploratory ethnographic study, we investigated the expe-riences of women with MBC in order to identify opportunities for physi-cians to enhance communication and improve quality of life for thesepatients.Methods: 16 patients with MBC were included in this ethnographicinvestigation including: patients diagnosed with metastasis at time ofinitial diagnosis (n¼8) and patients diagnosed with metastasis followingcompletion of treatment (n¼8). Patients completed 7-day photo journal ofdaily life with MBC followed by a two-hour in-depth interview. Patientswere asked to describe their disease experiences, including their rela-tionship with their doctors, management of their disease, and the impactof the disease on their personal relationships and finances.Results: This exploratory study generated a patient-centered model ofMBC disease experience similar to experiences of patients diagnosed withChronic Myeloid Leukemia (Guilhot, et al 2010). Patients moved throughfour stages: crisis, acceptance, adaptation, and stability. At all stagespatients expressed varying degrees of uncertainty related to both medicalfactors, including response to treatment, side effects, etc, and personalfactors related to age and life stage, emotional support, financial issues, etc.Experience at each stage was shaped by patient communication with theirphysician and other members of their support network. Patients can cyclethrough the model multiple times in response to changes in their diseasestatus or other factors, such as adverse events or financial stability. Aninitial crisis was transformed into acceptance as patients learned aboutoptions and made plans in response to the crisis. Adaptation followed aspatients adjusted to the physical, emotional, and financial demands oftreatment and developed routines and coping mechanisms in response tophysical and psychological challenges. Patients attained stability when thenew routines normalized and they were able to engage in activities thatwere not related to cancer treatment. Pervasive uncertainty was generatedby the unpredictability of both the disease and the treatment. Open