Research Pays

I've been doing a little research on the subject of inflammatory breast cancer (ibc), and I have some concerns about the information that the doctor gave me when he diagnosed me.

He told me that this was confined to my breast and hadn't spread anywhere. How does he know that? I keep reading that it grows in sheets (or nests) and not tumors. And, by definition, it apparently affects the lymph nodes. How can he know it hasn't spread anywhere if it's a disease that automatically affects lymph nodes? Did he biopsy any lymph nodes?

He told me that they would start with radiation and maybe chemotheraphy, but that surgery would be the last thing they do. This makes absolutely no sense. Every single thing I've read on ibc, without exception, has been that this form of cancer is always treated with chemotheraphy first to halt progress of the cancer cells (and to possibly shrink them), followed immediately by a masectomy. That is often followed by more chemo and radiation is last. So why the hell are they telling me that radiation is going to be first?

He didn't say it, but everything he did say led me to conclude that I am likely in Stage 0 or 1 of cancer. Because in those stages, you do start with radiation and you try breast conservation surgery. (He implied that surgery may not be needed by telling me that it would be the last thing they do if they decided it was necessary.) From everything I've read, ibc is automatically placed in Stage IIIb. At that stage, you never start with radiation, and with ibc, you never start with radiation.

I'm hoping that these comments were made by a surgeon that has no experience with ibc, but that my oncologist will have ibc experience. This is a very rare form of breast cancer. Only 1-2% of all breast cancer cases are ibc. It is not unusual for a doctor to have no experience with it. That is one of the many questions I'll be asking my oncologist tomorrow.

I have several things I'll be looking for him to tell me. And if what he's telling me doesn't make sense, I will be seeking out a second opinion from someone who does have experience with ibc.

I'll be honest that all of the research I've done has made me realize that my situation is much more critical than I first realized. When I say more critical, I just mean that delays in action and the wrong actions can have fatal consequences. I'm still confident that I will get through this okay, but I'm not going to blindly follow my doctor down a potentially wrong path. I think that in addition to my sfa (super-fantastic attitude), my decision to be well-informed and to get as much information as possible about this disease, is going to be what gets me through it.

That, and all of the amazing people who are surrounding me, supporting me, and loving me. Thanks. :)