Tell me about IBC, please!

Joannie · 01-29-2007, 01:49 PM

Hi all:
I am a her2+ bc survivor and visit this board frequently. I have a friend who was diagnosed with DCIS one year ago in Nov. The DCIS was quite extensive, therefore, she had a mastectomy and radiation. She was considered stage 0. Recently, she found a lump on the scar line and she has now been diagnosed with IBC. She is following a regiment of 4 rounds of A/C and 4 rounds of Taxol, dose dense, followed by surgery/radiation/tamoxifan. Needless to say, she is scared as all get out. I don't know that much about IBC, but have been doing some reading. She is in treatment but is going for a second opinion regarding her treatment this week at Dana Farber. I told her to ask about Tykerb and Herceptin, which has currently not been prescribed for her. What is the standard treatment and what is up and coming on the horizon. It seems like Tykerb looks promising. She currently shows no mets in body.
Please help me to understand. Is this bc treatable/beatable??? Her Drs. say yes, but she knows it's very serious. I want to console her but feel like I need more information from those who have been there.
As always, the information that is provided on this site has been invaluable to me. I hold all of you near and dear to my heart and you all are in my prayers.
Sincerely,
Joannie

gumoore · 02-17-2007, 10:36 PM

Hi Joannie,

I don't know that I'm the best person to post any answers as I'm in the middle of treatment for IBC myself. I am also in British Columbia, Canada.

I finished chemo on Jan. 8th (4 AC and 4 Docetaxol) and start radiation next week. I am on herceptin and will be on tamoxifin once radiation is done. I will then have surgery.

I'm locally advanced (breast and lymph), with no mets anywhere else. No mets anywhere else is key. I am ER+, PR+ and HER2/neu +.

In Canada, herceptin is given only to HER2/neu + patients. Tykerb is curently not available to me nor in a clinical trial in my area. It is also given in HER2/neu+ cases.

My oncologist says that all my results are "treatable" and he and his team are treating me with intent to cure.

Yes, this is a scary breast cancer. But it can be beaten. I have met many women online who are LONG TIME survivors.

Believe.

michele u · 02-18-2007, 08:30 AM

Joannie,

In MAMM magazine i just got it said there is a new infammatory breast cancer center that just opened in october at MD anderson. The number to get information is 1-800-392-1611 is says they see more IBC then anyone in the nation