Need some help and advice

Leslie304 · 08-20-2009, 06:31 PM

Okay folks ... I need some help. IBC or DCIS? Surgery first or Radiation first?? Here's my long story short. I was diagnosed at my local hospital with IBC in April 09, hormone neg, and strongly positive HER2. I went to Sloan-Kettering for a second opinion and they also diagnosed me with IBC. I began treatment at Sloan May 1st and have not had any tumor shrinkage (but mass is stable and lymph nodes have shrunk) so I went to MD Anderson last week to see Dr. Cristofanilli for another opinion. He told me I do not have IBC, I have DCIS. (he's the IBC guy!) Sloan tells me either way it's Advanced Breast Cancer so the treatment would have been similar no matter what cancer you call it and they don't agree that it's not IBC. Sloan is recomending another round of chemo with Tykerb/Xeloda/Herceptin. I've had only one round of this combo so far. Then Sloan wants me to go to surgery regardless of progress, then radiation. MDA is recomending radiation first to shrink mass and then surgery even though the skin will be compromised by radiation. They say they have expert sugeons to deal with the skin issue. I'm not clear on the pros or cons. They're both excellent physicians. Please give me any feedback or experience you've had about IBC/DCIS differences and also Radiation-Surgery or Surgery-Radiation. These are the #1 and #2 hospitals and I feel confident with both but this is tough. I don't know what to do and I have a decision to make SOON. Also - doesn't it make a difference with regard to having mastectomy on non-cancerous breast? If it's IBC I should have a double mastectomy but maybe DCIS I shouldn't. SOS girls!!! Thanks so much!
Leslie