Any one have neuro endocrine breast cancer?

mary57

Hi,

I was just diagnosed with Stage IIa,Grade3 nodes clear 0/6.  At first it was diagnosed as invasive ductal CA, but aftrer lumpectomy the final path report calls it neuro endocrine breast cancer.  I have been told that this is very rare with only 30 reported cases reflecting about 2-5% of all breast cancers.  To top it all off it is triple negative. I am being treated at MD Anderson and they have little info on this type cancer.  The treatment is also unknown!   I am bit overwhelmed and not to mention scared.  I am trying to keep a positive outlook.  I see the Onc. next week for 1st visit.

Mary 57

Please keep me in your prayers.

CathrnJ

Mary,

I am sorry to hear you're not getting the answers you need while dealing with your diagnosis.  I don't know about your type of cancer but I've heard of other women having pathology, etc sent to places like Mayo Clinic or Johns Hopkins.  Johns Hopkins has an "Ask an Expert" discussion forum and maybe they have more treatment information than MD Anderson.  My best suggestion is to push your physician to find someone to consult with that has experience with your type of cancer and the treatment.  Make sure you are comfortable with the answers - if you don't like the guessing, don't accept it.  Be sure you are as knowledgeable and informed as your physicians when it comes to treatment.

The address for Johns Hopkins is:  http://www.hopkinsbreastcenter.org/services/ask_expert/

I wish you all the best and will keep you in my prayers.  Please let me know how you're doing in the months to come.  Feel free to send a private message, if you'd like.

Cathy