From the President of the IBC-IC: Massimo Cristofanilli, MD

Dear Inflammatory Breast Cancer (IBC) Community,

As we gather to reflect on 2019, let us take a moment to remember the brave women who fought IBC with every available resource they had—but who are no longer with us. Their loss should serve as a reminder of the reasons we continue to come together, and a call to increase our energy and focus as an organization.

We can only grow in our understanding of this disease by joining our forces and resources. It brings me hope that we have been able to come together as a community these past 2 years on several occasions, and that we’ve had the opportunity] to share new ideas and concerns. There are now actual projects and efforts aimed at highlighting the special needs of IBC patients compared to the more general population of breast cancer cases.

IBC is different in many ways. We recognize the fast pace of its progression, which quickly involves both the breast and local nodes using the lymphatic system as the primary infiltrating and spreading mode. It seems an obvious task to define such presentation and subsequent clinical behavior as “unique,” but that is not the case for the larger oncology community. Therefore, we should welcome any dedicated effort to create an easier system for clinical classification and diagnosis.

At the prior International IBC conference in Madrid in 2018, we promised to understand the needs of our IBC community worldwide—and we were pleased to contribute to the organization of the 1st International Workshop on IBC in Tunisia. Professor Hamouda Boussen invited clinical investigators and young physicians from the region to discuss their contribution to the description of IBC clinical characteristics and multidisciplinary management.

The meeting was also an opportunity to discover the practical challenges that these patients and their physicians face every day. Many of these challenges are unknown to Western Countries, such as availability of transportation, clinical space, access to drugs and equipment—all of which contribute to a much lower survival expectation for patients facing such an aggressive disease in different parts of the world.

The most pressing order of business for 2020 should be to reduce the IBC burden by advocating with local authorities and industries for access to an affordable standard of care for those patients. Participating in this meeting was an important personal experience that gave me the chance to realize the urgency of sponsoring and organizing similar international workshops more regularly. Starting in 2020, we will have yearly IBC international meetings and workshops—and I would ask all of you to get involved in proposing and organizing a local meeting.

The New Year also brings renewed initiatives and a continued focus on innovation and discovery. We hope to implement a larger, prospective, international IBC registry to understand the impact of this “rare” disease in the breast cancer world and evaluate further resources and needs.

We will continue to bring together clinical investigators, scientists and advocates to develop more effective patient-centered treatments. The 7th International IBC Conference will be held in December 2020 in Houston, Texas, ahead of the annual SABC. This will be a time to review the accomplishments of our IBC community since our first conference in 2008.

I want to close with a note of hope for 2020: the IBC-IC is growing! Join us now to give the IBC community a stronger voice and more resources.

Happy New Year!

Sincerely,

Massimo Cristofanilli, MD, FACP