If your cancer team makes changes in your treatment protocol, hopefully that is to address your special needs. The care I am writing about here is the agreed upon standard of:
- Dr. Nato Ueno, director of the the Morgan Welch Inflammatory Breast Cancer Research Program and Clinic MD Anderson in Houston, TX, (the first clinic in the world devoted to IBC care)
- Dr. Massimo Cristofanilli, at Robert R. Lurie Comprehensive Cancer Center at Northwestern University in Chicago, IL.
- Dr. Kim Blackwell, at Duke, in Raleigh, NC.
Having said all of these things, I know some IBC’ers do not have a mastectomy. Those tend to be women diagnosed at stage four. This does not mean the doctors have given up on them; it is a personal choice based on that person’s needs. That choice is a perfect example of very personalized care.
Personally, I find it harder to live with doubt than fear, and we need to be comfortable with our care. As much as we want our care to be personalized, it is hard not to look around to “see what she is having.” Coupled with the pressure that we have to be “whole” again, sometimes we can be rushed through our care or offered “wholeness” too soon. I had a triple negative Inflammatory Breast Cancer diagnosis. What worked for me, might not work for you. What worked for you, as a non triple negative IBC, might not work for me. But some things are somewhat standard, and that is why I am hoping you share this message today.
Share, chat, and thank you for listening!”
Terry Lynn Arnold
Want to hear from some doctors on standard of care?
This is my favorite link of medical lectures on IBC. FYI, graphic imagines.
Also this is a leading paper on IBC care.
As education grows, I hope to list more.
This post was ran as a guest blog in Breast Investigators.