Inflammatory Breast Cancer Now Has a Diagnostic CodeMetastatic Breast Cancer Alliance
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Inflammatory Breast Cancer Now Has a Diagnostic Code
“Excellent workshop! I was a patient moderator at our table. While I was the only person with MBC, the discussion was super productive. As far as the panelists and the workshop presentations goes, it helps fill what I consider a gap in the patient/medical provider relationship. Doctors don’t often use the more appropriate language when dealing with patients or focus on the medical/clinical aspect and may forget to show some empathy. As a patient, I learned also about resources that I may find useful as I advocate for self and others to help initiate conversations (e.g., cancer survival rates.com). Please don’t stop here. A part 2 workshop at the next SABCS would be super helpful.”
“The ABC Global Alliance Do’s and Don’ts Communication Workshop at SABCS 2024 provided an invaluable platform to explore communication challenges and opportunities between metastatic breast cancer (MBC) patients and stakeholders. The diverse mix of participants, with all stakeholder groups represented at each table, fostered open, honest discussions that led to actionable ideas for improving communication and collaboration. As the only MBC patient at my table, I gained a unique perspective on how others connected to MBC—though not personally living with it—perceive the disease. While some opinions and insights aligned closely with my own and those commonly expressed within the broader MBC community, others were surprisingly disconnected. What stood out most was witnessing the transformative “a-ha” moments when participants recognized misconceptions they held and began to understand how certain topics could be addressed with greater clarity, empathy, and sensitivity toward those living with MBC.”
“Thank you for your leadership in putting together the Do’s and Don’ts workshop at SABCS. It was, without question, the most impactful session that I was able to attend at this year’s conference. As a patient advocate, I appreciated the panel of speakers you chose to share their points of view and expertise on this topic.
Having the opportunity to discuss this complicated topic in small groups made up of people living with MBC, advocates and allies, health care providers, researchers and industry was a truly unique and much needed experience. It’s rare to have this opportunity, and I believe everyone in the room appreciated hearing multiple points of view in a collaborative environment.
I do hope this can be an annual event at SABCS or other major conferences.”
“I loved attending the communications workshop. It was an excellent idea to bring together patients and healthcare providers, and at my table this led to a very rich exchange around how communications – both sending and receiving information – are often conducted in a less-than-optimal manner. Not on purpose, but often because we have different starting points. Sharing the experiences – both by the patients and the healthcare professionals – led to identifying together how these communications could be improved. Stepping into the shoes of one another helps us to better understand each other’s position, perspective and needs. And only then can we change and improve the way we communicate.
Thank you to the ABC Global Alliance and the MBC Alliance for creating this unique workshop, that also yielded helpful insights for industry partners on how to best communicate to patients and healthcare providers, e.g. around clinical trials. It would be great to build on this workshop in the future with further multi-stakeholder exchanges as it has proven to be so valuable for all involved.”
“The joint ABC Global and MBC Alliance event held at San Antonio Breast Cancer Symposium was amazing! The entire eco-system of healthcare was represented from around the world, focused on betterment of patient lives in metastatic breast cancer. At my table there were physicians from Chile and Australia as well pharmaceutical companies, patients and caregivers. There was an actionable brainstorming session that resulted in short-, medium- and long-term ideas around specific areas of focus. I learned so much from each one of the attendees and the podium presentations and look forward to future opportunities to support and attend this type of event.”
Beth Burnett is the chair at Metastatic Breast Cancer Alliance, leading the coalition of allies to meet the needs of those living with or impacted by MBC. With over 30 years of experience in Oncology primarily in the pharmaceutical industry, Beth retired from Pfizer three years ago and joined the Alliance as an Individual Member/Advocate. Beth has a proven track record of working collaboratively with non-profits and patient advocates. She is passionate about improving the experience for people with cancer. Outside of work, Beth enjoys reading, hiking, cooking and traveling.
Dr. Ana Maria Lopez, MD, MPH, MACP, FASCO, is a medical oncologist and integrative oncologist at the Sidney Kimmel Cancer Center at Thomas Jefferson University, where she serves as Professor of Medical Oncology and Integrative Medicine and Nutritional Science.
Dr. Lopez has dedicated her career to addressing healthcare inequities and supporting the development and advancement of a diverse healthcare workforce. By working with communities, by listening to needs and priorities, and by considering innovations in technology, digital health, and wearables, Dr. Lopez has committed herself to improving health outcomes. She has authored more than 130 peer-reviewed journal articles and multiple book chapters.
Dr. Lopez’s work with her professional organizations echoes her health equity priorities. She is President Emeritus and Master of the American College of Physicians; member, Board of the National Coalition for Cancer Survivorship; and Member, Executive Board, Society of Integrative Oncology. Dr. Lopez formerly served on the Board of the National Hispanic Medical Association and is past-Chair of the Cancer Health Equity Committee, American Society of Clinical Oncology.
Dr. Belinda Kiely is a medical oncologist who specializes in breast cancer. She is a Staff Specialist at Concord and Campbelltown hospitals in Sydney, Australia and a Senior Clinical Research Fellow and Oncology Prognostication Program Lead at the NHMRC Clinical Trials Centre, University of Sydney. Her research interests include breast cancer treatment, prognostication and survivorship. Dr. Kiely led the development and evaluation of a web-based tool to help oncologists estimate and explain scenarios for survival time to patients with advanced cancer and contributed to the development of CancerSurvivalRates.com, a website helping patients with cancer and their doctors find prognostic information. Dr. Kiely is a member of Breast Cancer Trials ANZ; co-chair of the Medical Oncology Group of Australia Breast Cancer Expert Group; a member of the Breast Cancer Network Australia Strategic Advisory Group; and was a member of the Advanced Breast Cancer International Consensus panel in 2019 and 2023.
Reshma Jagsi, M.D., D.Phil., is the Lawrence W. Davis Professor and Chair of the Department of Radiation Oncology and a Senior Faculty Fellow in the Center for Ethics at Emory University in Atlanta, Georgia. A graduate of Harvard College, Harvard Medical School, and the University of Oxford, where she earned her DPhil in Social Policy as a Marshall Scholar, she is the author of over 450 publications regarding both breast cancer and bioethics. She is the PI of multiple grants from the US National Institutes of Health, the Susan G. Komen Foundation, and other philanthropic foundations. Both a clinical trialist and health services researcher, she is known for research to strengthen autonomy in breast cancer patients and to individualize breast cancer care.
As a radiation oncologist who treats patients with breast cancer, she leads multicenter randomized trials of forgoing radiotherapy in lower-risk patients, intensifying it in patients with more aggressive disease, and enhancing patient-centered communication. Active in organized medicine, she serves on the US National Academies of Science, Engineering, and Medicine’s Committee on Women in Science, Engineering, and Medicine; the US NIH Advisory Committee for Research on Women’s Health; the Steering Committee of the Early Breast Cancer Trialists Collaborative Group; and the Lancet’s Breast Cancer Commission.
She has received many honors, including the AAMC Group on Women in Science and Medicine’s Leadership Award, LEAD Oncology’s Woman of the Year Award, ASTRO’s inaugural Mentorship Award, AMSA’s Women Leaders in Medicine Award, AWiS’s Meridian Award, AMA’s Inspiration Award, AMWA’s Woman in Science Award, and AAWR’s Marie Curie Award. She has been elected to the American Society of Clinical Investigation and Association of American Physicians, and is a fellow of the AAAS, ASCO, ASTRO, AAWR, and the Hastings Center.
Dr. Cardoso is the Director of the Breast Unit of the Champalimaud Clinical Center (CCC) in Lisbon, Portugal. She is board certified in medical oncology and internal medicine. She earned her medical degree at the University of Porto in Portugal and completed fellowships in the Translational Research Unit of the Jules Bordet Institute (IJB) in Brussels, Belgium, and the Department of Molecular and Cellular Oncology at MD Anderson Cancer Center in Houston, Texas. She then worked for 10 years as Assistant Professor at the Medical Oncology Clinic of the IJB and served as the scientific director of the international research network TRANSBIG for 7 years (EU Framework VI). She returned to Portugal in October 2010 to create the Breast Unit of the CCC, leading it to become the 1st certified Breast Unit in Portugal.
She has received several educational and research grants. Her research interests include biology of breast cancer, prognostic and predictive markers, and new anticancer agents; and she is involved in many phase I-IV breast cancer clinical trials. Dr. Cardoso is also deeply involved in the field of global cancer policy, accessibility and inequalities, and is the founder and President of the Advanced Breast Cancer (ABC) Global Alliance, as well as the founder and chair of the ABC International Consensus Guidelines Conference.
Dr. Cardoso has authored about 350 publications and has presented her work nationally and internationally. She is editor-in-chief of The Breast Journal, associate editor of the European Journal of Cancer, and is an editorial board member of several other journals. She is active in numerous professional organizations and was a member of the Board of Directors of ESMO, ECCO and EORTC. She has received numerous awards, including the prestigious Order of Santiago da Espada for Scientific Merit received from the President of Portugal on June 10th, 2015.
Ellen Landsberger is a retired Obstetrician-Gynecologist who specialized in Maternal-Fetal Medicine. She was active in the American College of Obstetricians and Gynecologist (ACOG) and retired from practice in 2016. She developed Breast Cancer, Stage 1 ER+/PR+/Her2- disease at age 43 and treated it aggressively. Ten years later she was found to have serous carcinoma of the uterus and again, treated it aggressively. Shortly after retiring from her busy academic practice, she was shocked to be diagnosed with metastatic breast cancer 22 years after her early breast cancer. She decided to use her voice and experiences as a patient to advocate for others who may not have had the same opportunities to receive the expert medical care from which she benefitted.
She volunteers as a Breast Cancer Patient and Research Advocate with several organizations, primarily at Memorial Sloan Kettering Cancer Center where she is treated. She is a member of the Patient and Family Advisory Council for Quality (PFACQ) at MSK. Through PFACQ, she participates in the Research Subcommittee and the Cancer Control and Population Science Subcommittee. She has also been the Patient Advocate representative from MSK to the Translational Breast Cancer Research Consortium since 2022. She participates in the Patient Advocate Working Group, the Endocrine Resistance Working Group, the PRO Working Group and is the Lead Advocate of the Correlative Science Interest Group, always adding the patient’s perspective to these essential clinical trials. She is as proud of her advocacy work as she is of her career as a physician.