Saying Hello

IBC is treated differently than other forms of breast cancer.  The normal course of treatment is chemo first, then surgery, then radiation.  The chemo is used to reduce the cancer there to the point where the surgeon can get "clean margins"; that is, a border of healthy tissue sealed off from the cancer tissue.

 The reason you might not have surgery is if your cancer has spread elsewhere.  In this case, the recommended course often is NOT to have the mastectomy, as the cancer has already spread, so there is not much survival benefit, though this is the subject of some debate in the medical community.

It sounds like you have a team that is unusually knowledgeable about IBC.  Many places don't even diagnose it, much less how to treat it.

Because your cancer is HER2+, your chemo will most likely be TCH (Taxotere, Carboplatin, and Herceptin), because Herceptin is specifically used to target HER2+ cancer.

Many patients also get hormonal therapy following the chemo/surgery/radiation for several years, but that would not apply to you as your cancer is not hormone-sensitive (ER/PR- means not sensitive to estrogen or progesterone).

Also, I see you are in Boston.  The Dana Farber Cancer Institute there is top-notch.  And if you ever want a second opinion, the world's leading expert in IBC is at Fox-Chase in Philadelphia - Dr. Massimo Cristofanelli.  I know this because he just left our neck of the woods, here at MD Anderson, to start a new IBC clinic there.

Let me know if you have any other questions - I would be happy to help.  Also, there is a website specifically dedicated to IBC: www.ibcsupport.org.  The ladies (and some gentlemen) there are also very knowledgeable.

Sincerely,

Sean E.

Houston, TX

hi! You mention your team and I see you are in Boston. I was treated at MGH since the dr's up here in Concord had not ever treated IBC.  Where are you being seen?

My onco (Dr. Ryan) just relocated to Philly so her practice was reassigned to Dr Urban. Dr Michelle Gadd was my breast surgeon. I had a double MRM (my choice to do both for balance sake) - you can hardly see the scar!  I understand Dr Beth Overmeyer at DFCI is now focusing on IBC. But, since MGH & DFCI are "cancer partners", most of the docs are on staff at both.

As others have said, the protocol from NIH is indeed chemo, mastectomy, radiation, and then some sort of chemo/hormone therapy. I am almost 4 yrs from diagnosis and doing fine with the exception of an occasional skin reaction when I wear my prosthetics. I have sensitivity to them apparently, so now I'm considering reconstruction surgery later in the year, since my business clothes really need boobs under them to make them look right.

I was ER/PR+, HER2- so different meds (Adriamyacin/Cytoxan, Taxol, and now Femara) ...

 There's an active IBC support group that meets in Newton that I can refer you to, if you want. Just send me a private message with your contact info.