Words of Wisdom???

This is my first post on this site, so I hope I'm posting correctly.  My mom was diagnosed 2 weeks ago with triple positive metaplastic breast carcinoma.  As you all know triple negative is rare and treatment limited.  Along with the triple negative she also has metaplastic (not metastatic) carcinoma.  This is even more rare than the triple negative with only about 3% of breast cancers making up this group.  Even less is know about metaplastic breast cancer so they will be treating it as they would any other triple negative breast cancer.  I don't have a specific question, just looking for advice.  I know you are not doctors out here, but sometimes I think you patients know much much more than many of the doctors do.  Because my mother hasn't started any treatment yet.  I'm looking for any type of advise out here?  What things have your doctors done that were successful and what things were not so succesful?  If you could go back and start treatment over, would you have done anything differently knowing what you know now?  Any advise in what I should look for in an oncologist?  From what I'm reading being more aggressive up front with this type of cancer seems to give the best outcome, but the oncologists don't seem to be that aggressive that we have spoke with, and these oncologists are from some of the most reputiable cancer centers in America. They feel the "standard" approach should be taken.  Lumpectomy, chemo and then monitor.   I don't want to say that I know better than the doctors who are highly trained in this specialty, but we have one shot at this and there's no going back.  I guess I should mention that my mothers tumor is about 3cm, the MRI doesn't show any abnormal lymph nodes (however metaplastic breast cancer usually is node negative) and no metastasis.  Any imformation at all would be greatly appreciated.  God bless all of you out here and keep up your couragious fights.  You give me and my mother lots of hope.  Thank You.

Edited by daughter858 - Feb 23 2009 at 6:10pm

Dear Daughter,

Dear Daughter,

First I would like to thank all of you for your great advise and support and encouragement. 

Edited by daughter858 - Feb 23 2009 at 6:10pm

Hi!  You might ask why the doctors are not proposing giving AC + T "dose dense", which means every two weeks, instead of every three.  Research seems to indicate that it might be better.  In fact, some women have the Taxol part every week.

Carol,

Edited by Nancy - Feb 24 2009 at 3:02pm

Daughter,

Go with dose dense if your mother's body can tolerate it.  Her white blood cell count will most likely drop, so keep an eye on that.  Ask the oncologist about research on the success of Taxol x 12 (given weekly).  Also, has she had a PET scan?  With the grade and size of your mom's tumor, I'd think a PET would be useful too.  We would think our doctors would want to back up their decisions with documentation so we would feel more confident in their methods of choosing treatments.  Good luck to you and your mother.  You both will get through this!  Tell your mom that a hairless head doesn't feel too bad!    Hey! we try to keep a sense of humor throughout this whole process. 

Try this    www.breastcancer.org/treatment/chemotherapy/new_research/20090417c.jsp 

Thank you ladies.  This is great information and I will definately bring this up with my mother's oncologist.