Finding the best IBC care for YOU! by Phyllis Johnson

Once upon a time finding treatment for inflammatory breast cancer (IBC) was a daunting task. While there were experts scattered around, they didn’t offer coordinated care for oncology, surgery, and radiation.  Then in 2006 MD Anderson opened the first IBC clinic that combined oncology, surgery, and radiation expertise at a research hospital. Duke and Dana Farber soon followed with dedicated IBC clinics.

So, if you are recently diagnosed with IBC, do you need to go to one of these well-known clinics? Not at all! Now there are more choices. The James Cancer Hospital in Ohio, the Memorial Sloan Kettering Cancer Center in New York, the Sidney Kimmel Cancer Center – Jefferson Health in Pennsylvania, and others have IBC clinics now.

Another factor to consider is that some of the doctors who led the research and pioneering techniques in IBC treatment at these “biggies” have gone to other hospitals taking their expertise with them and sharing it with their new institutions. In addition, many of the more than 70 designated comprehensive cancer centers in the United States have experience with IBC.

So, if you are within driving distance of a dedicated IBC clinic or comprehensive cancer center, it makes sense to go where the experts are. However, suppose you live far away from major hospitals. Can you get quality care with a local oncologist? Yes, maybe. Consider these factors:

1. Is the doctor familiar with trimodal care for IBC? Your treatment plan for a Stage 3 IBC diagnosis should start with a systemic treatment like chemotherapy, followed by a mastectomy, and radiation. If your doctor wants to start with surgery, you need a different doctor! See the IBC Research Foundation website for more information about what your treatment should include.
2. Is your doctor willing to consult with an IBC expert at one of the major clinics? There are so many variables with different IBC subtypes, new drugs, and your own medical history, that a second opinion about your care is a good idea. This is especially important if you are diagnosed at Stage 4.
3. Is your doctor realistically optimistic? You don’t want a doctor who gives you six months to live or one who promises a quick cure.
4. Can you divide where you get your care based on your local options? You may opt to get chemotherapy close to home, but go to a surgeon who has done more IBC mastectomies or to a hospital with the latest radiation machines.
5. What will your insurance pay for? Be sure to check the fine print for any going “out of network” charges.
6. Are there other factors in your life like children living at home or work responsibilities that make travel difficult?

Today’s doctors have access to an array of resources that allow them to send imaging results and to consult with experts a world away. Whether you live next door to a world renowned clinic or far away, you can get the treatment you need.