IBC w/ bone,liver and lung mets

Not sure what the oncologist will do first as I've heard chemo is usually the first treatment for ibc.  It may depend on how bad her hip is.  She will probably have a run of test if she has not already, like a Pet, bone scan, MRI, brain MRI. 

Terri

I don't know about the second opinion from records, sistery.  I have never been to either, as my local oncologist at the university center is absolutely excellent, and the editor of one of the most popular oncology textbooks.  Under his care I was just declared free of cancer, despite the suckiness of IBC, and hope to be that way for many years.  I also have some local Stage IV friends treated by him that have been NED, which stands for No Evidence of Disease, for years.

He is in Morgantown, WV, if that is any closer for you.  If you must fly and decide to do it, the preeminent IBC Oncologist in the country is Dr. Masssimo Cristofanilli, who is at Fox Chase in Philadelphia.

I just wanted to let you know that I'm here for the same reason you are, my sister also has IBC.  I completely understand the fear you speak of.  Because of all the fear, worry, stress, emotion, helpless feelings, etc.,  I've actually been physically sick.  She's my daughter's only aunt and my only sister - - I'm successful most of the time at thinking positive about the outcome of all of this and I'm praying to God for survival here for her.  The times that I'm not so successful with those positive thoughts, I instantly start to feel sick.  So, I've got a built-in reason to think positive! 

I don't speak from medical knowledge, nor experience, but I too agree that waiting to begin chemo *sounds* worrisome.  At the very least, it's worth a second opinion, and third, etc., if need be.  Better to play it safe, esp. w/ my understanding of IBC (& I think it's the general consensus).  It's just so aggressive and unfortunately, your sister does have several mets.  From lots of places, I've read how IBC can literally spread overnight, so with that in my mind, it's hard to understand when someone has to wait any amount of time to begin treatment.  She may also be dealing w/ doctor/s who are basing their knowledge of BC on *just* BC.  While IBC is a BC, it's also very different.  Rare, which means many doctors do not have much knowledge of it, let alone how to treat it.  Treatment for IBC is different.  I've heard many times how important it is to find a doctor (oncologist) that has experience treating (or better yet, specializes in) IBC.  And, a doc w/ that knowledge is hard to find since it's so rare.  Research is much more difficult, because just to get an adequate amount of patients to study, the studies would basically have to include patients from around the world.  Look at those recomendations in replies above to travel to TX (MD Anderson) or to PA (Fox Chase).  While of course I know it's worth it - it's someone's life - not everyone has the means to do that just to see a doctor w/ knowledge (albeit, they are the leading experts, esp. Dr. Cristofanilli) of IBC.  If money was no issue, I'd have had my sister in Dr. C's office for that 2nd opinion she had way back in Jan., '11 when she was first diagnosed, let alone having her stay in PA so he could treat her.

If you ever want another sister's support, feel free to let me know!  While all the ladies here have been so supportive of and helpful to me, I'm hesitant to share *what I'm going through* as they are going through so much more!  No one here has made me feel that way, I just feel bad thinking of what my sister, your sister and these wonderful ladies are going through and have gone through.  Truthfully, my brother keeps reminding me "it's not about me", so I can't really talk to him about how hard this is.  I'm the one my sister calls in those dark times, not him.  I don't really have anyone else I can talk with about this so, while I recognize the need for loved ones to have support I do know that the patient is going through so much more.

I'm praying for you and your sister!