WBRT if Stage II after Lumpectomy with Intraoperative Radiation?

chelseasanfran

I was pushed into having a Lumpectomy with Intraoperative Radiation by the first breast surgeon I saw after initial diagnosis with Ductal CA. I was told IORT was comparable to Whole Breast Radiation and that I was a candidate based on sizing, which was way under 2 cm by an US biopsy. As it turned, my tumor was 2.4 cm and I had isolated tumor cells in one of the biopsied nodes, so I wasn't actually a candidate.  I should have had a pre-op MRI for proper sizing as US is grossly inaccurate in terms of sizing. I have since had multiple contradictory recommendations regarding whether or not to have additional WBRT. It turns out that I had many side effects, which I was not told about regarding the IORT, and was never told that there are/were no data on IORT beyond 5 years.

So, when it turned out my tumor was over 2 cm and I had isolated tumor cells (supposed to be treated as the equivalent of node negative), the surgeon had nothing the say and referred me to the radiation oncologist who did the IORT. He threw out some numbers that were based on studies of women who had never had IORT and he and the affiliated institutional tumor board recommended I have additional WBRT, but provided no written or applicable decision support information for their recommendation. 

However, a number of other decision leaders in the field (one radiation oncologist, one independent tumor board, and one breast surgeon who is actually leading clinical trials on radiation treatment), leaders who were/are not affiliated with the institution or physicians involved in my surgery, recommended against it. I am currently awaiting a comprehensive second opinion (I saw 4 specialists - rad onc, breast surgeon, plastic/reconstructive surgeon, and med onc) from a leading breast cancer center in my area.

I would really like to hear from any women who have been in my situation and or had IORT.

Also, if anyone would like more information on my experiences with IORT, please let me know.