For the sisters with IBC

This came from a blog sent to me. It's got some information I didn't know about IBC, so I thought I'd share....


Today was the big day. Jared and I went to my appointment with Dr. Cristofanilli - THE man to see for Inflammatory Breast Cancer. He was wonderful - very soft spoken with an Italian accent. He was also very patient with us and took the time to answer all of our questions. And believe me- we can ask a LOT of questions!! I was even brave enough to ask for a picture with him, hehe.

So the bottom line is that we're going to add a few big guns to our fight. IBC is quite aggressive (5 cents, please!), but it's also more predictable in how it spreads. If it's going to spread, it's most likely going to spread to the chest wall. The next highest risk is the bones. So we now have ammo to try to prevent both of those things from happening. For the chest wall issue, we're going to have me do radiation twice daily for 5 weeks, rather than once daily for 6 weeks. And for the bones issue, he's recommending starting me on Zometa, which is usually reserved for patients whose cancer has already spread to the bones, but we're going to use it as a preventative for any little cells that may be already floating around the bone marrow. So those are the two biggest enhancements to my treatment. He also wants to add some scans like another breast MRI before surgery, and also a PET scan very soon and another in 6 months. All of these things are different than with normal breast cancer. With normal breast cancer, they don't usually do scans when you're done with treatment. Instead, they rely on the patient's symptoms and bloodwork. So they only do scans if the patient is complaining of pain, etc. But with IBC, it's more important to do scans because it's even more important to catch the spreading cancer earlier because early treatment is more effective.

All of these things (and so many more!) are reasons that I wanted to go to an IBC specialist. Because it's so rare, a lot of oncologists don't treat it very often and aren't familiar with the latest advances. So it tends to get treated as regular breast cancer, which is just not aggressive enough.

So that's about it. Dr. C will write up a report for my doc at home, and then they can confer about the treatment plan going forward. I'm soooooooo extremely blessed to have Dr. C in my corner, in addition to Dr. K, who is also wonderful. Now I really feel like EVERYTHING is going to be done to kick this thing in the butt!!!


In case anyone is wondering Dr. Cristofanilli is located in PA, and the writer of the blog is in Northern CA. If you'd like to read more, here's the link http://www.caringbridge.org/visit/moniquegriffith