The Latest on BIA-ALCL and What A Patient Advocate Reports to Her Community
As a patient advocate for breast reconstruction I am often asked questions about recent findings and reports in the news. This week I was asked questions about the latest NBC News article, and the same topic reported in other media outlets. Theses stories were on the safety of breast implants and a rare disease, BIA-ALCL, Breast Implant-associated Anaplastic Large Cell Lymphoma.
I listened attentively as I watched the nightly news and read articles across other media venues. I immediately thought to myself, this was going to understandably stir concern and controversy in my community. It did. I was asked questions about the reports presented this week in the news media from women who currently have implants or are planning to for breast reconstruction after breast cancer. My immediate concern was to calm their fears and share what I know.
This is what I know. This is not a new topic. The data has been collected on the incidence of BIA-ALCL across the globe. The past two years at the national conference of ASPS, this topic has been studied, reported on, and even debated in a healthy, productive manner by plastic surgeons in attendance. I listened, learned, and followed up by reading more about the topic in the months after attending the conferences.
Evidence-Based Articles on BIA-ALCL
It is important for me to read articles presented by various scientific entities about this rare disease, so I can accurately report evidence-based findings to the concerned community I serve. I want to present some of those articles here for my readers. One of the clearest explanations for me as a patient advocate is from Mark Clemens, MD, who gave a strong understanding of numbers presented regarding BIA-ALCL. From the March 2018, article:
The purpose of this document is to discuss and bring clarity to some of the figures surrounding this rare disease.
Another article can be viewed here from December 2017 JAMA, The Journal of the American Medical Association. The conclusion of the article makes an important point I relay to concerned patients.
Breast implant-associated anaplastic large cell lymphoma is a rare cancer in patients with breast implants but is increasing in incidence. It is important for all physicians involved in the care of patients with breast implants to be aware of this entity and be able to recognize initial symptoms.
The Responsibility of A Breast Reconstruction Patient Advocate
One incident of BIA-ALCL is one too many. I believe many caring, concerned, informed plastic surgeons would agree. However, all plastic surgeons need to be educated on the signs, symptoms, and follow-up so they can communicate clearly and accurately to their patients. Patients also need to be their own best advocate and ask questions to give them peace of mind given the latest reports. I feel a combined effort is needed to educate and inform plastic surgeons and patients.
In my patient advocacy work educating patients, it is important to help my community understand evidence-based studies are being done and data is being collected. I encourage them to have a shared decision-making conversation and discuss concerns with their plastic surgeon if they have had or are planning to use implants. Ask who the manufacturer is. Ask about any warranty programs offered by implant manufacturers. Discuss any symptoms you should look for associated with BIA-ALCL. Find peace of mind by asking questions.
This is what I know. Over a year ago, I attended a scientific session presented at the ASPS annual conference by passionate plastic surgeons researching the incidence of this rare disease. A statement was made during the session. It made a lasting impression. One of the research presenters stated, “We have to learn to control the message.”
News media channels have a different motivation for “controlling a message” than patient advocates responsible for the concerns of their community.
This patient advocate strongly feels evidence-based studies, education, and awareness are the key to topics related to breast reconstruction.
