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ibc treatment centers

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Inflammatory breast cancer (IBC) is a unique form of breast cancer, marked with rapid onset and also physical changes that can often be mistaken for an infection or an injury. In a matter of days or a few weeks, the breast can appear swollen due to cancer cells blocking lymph vessels in the skin, and this can cause redness of the breast skin, nipple distortion and pain.  IBC typically does not present with a lump, making IBC more difficult to detect using standard screening technologies.

Just like IBC presents differently and has different diagnosis needs, the standard of care is different from general forms of breast cancer. Due to the rarity of the disease, IBC diagnosis and treatment is not commonly taught in medical or nursing schools.  Patients can be very discouraged to meet with their local medical team to find out that if their oncologist, has treated an IBC patient in the past, it might have been only a few of them in a full career in medicine, if any at all.

There are a few phrases heard in the IBC world but rarely do you see a definition associated with the phrase:  “multidisciplinary clinic” and “trimodal care” for example. These phrases are a direct reflection of the unique needs in care for this complex disease – tackling both local disease in the breast and distant disease possibly circulating in the blood early after diagnosis.

What is trimodal care?

Trimodal care would include systemic therapy (chemotherapy and targeted therapies) given by medical oncologists, breast cancer surgeons, and radiation oncologists who have specific expertise in treating IBC.  This unique team needs to work together, and closely monitor the patient due to the aggressive nature of this type of breast cancer.  The goal of chemotherapy as a first step is to render the patient a surgical candidate, however the timing of surgery must be coordinated so it is done at the correct time. In IBC it is especially crucial that the tri-modal team ensures that the patient is responding well before surgery but are mindful not to miss the surgical window since even local control can be a quality of life factor to strongly consider. The steps of trimodal treatment for IBC are in the schematic linked here.

What should a trimodal clinic (multidisciplinary clinic) consist of?

A multi-disciplinary clinic for IBC would include medical oncologists, breast cancer surgeons, and radiation oncologists who have specific expertise in treating IBC. Such clinics are not common and the few that are operating in the US are based out of university centers. These university-based hospitals are also conducting and publishing IBC research and creating IBC focused clinical trials based off this research and through building relationships with drug companies.  These programs include research scientists, pathologists, radiologists, medical oncologists, surgeons, radiation oncologists, plastic surgeons and lymphedema specialists. All the medical teams working together assure that the IBC patient doesn’t fall thru the cracks and receive the proper care required for this aggressive disease and to help them live as full lives as possible after their treatment is complete.

There are 5 trimodal clinics in the US:

Memorial Sloan Kettering Cancer Center

THERE IS 1 TRIMODAL CLINIC IN THE UK:

We would be remiss not to mention Dr. Massimo Cristofanilli, MD who is viewed as one of the world’s leading experts on IBC.  He is a medical oncologist with many years of experience in treating aggressive cancers including IBC and is internationally known in breast cancer drug development. He practices at New York Presbyterian Hospital /Weill-Cornell where he holds a leadership position and pursues advancing research, care and quality of life for patients with IBC.

As interest is growing in IBC care, some positive changes are coming.  Clearly to have IBC research done at all/most hospitals or cancer centers is cost prohibitive based on the incidence of this cancer. In addition, research resources are limited however, there are medical centers that wish to be known as Centers of Excellence for IBC.  These centers will have teams especially trained to give the proper standard of care for IBC without the research component. As these centers are developed, we will add them to this article.

We do not wish to cause concern if you are not able to receive your treatment at a specialty center.  We have seen excellent care by community doctors, but this is not the norm, especially when the cancer does not respond well to initial chemotherapy.  However we wanted to address this topic as it is a common question. As IBC awareness and education is growing, we hope to see more options for patients regardless of location.

We also want to mention one of the most published researchers, Naoto T. Ueno, who was the executive director of the Inflammatory Breast Cancer Research Program at MD Anderson Cancer Center. He has now been selected to be the director of the University of Hawaii Cancer Center.  He created a comprehensive research program and clinic devoted to IBC which is the world’s largest and renowned for rare breast cancer at MD Anderson.

He is also widely regarded for his preclinical development and research efforts that translated into clinical trials.

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