advise

Hi

Get the MRI. It will give the surgeon a better picture than a mammogram or ultrasound. My surgeon said even with the MRI, which he ordered before I even consulted with him, he can't "stage or grade" accurately until they get in there and see what we're dealing with and get the pathology back.

I had a BMX with immediate reconstruction on 11/11/11. Tumor was larger than showed up on mammo, ultrasound and MRI. Nodes were clear, margins were very good.

My father never had any type of cancer, died during heart triple bypass surgery. I had one aunt with BC. My mom and 2 older sisters: no BC. I had no "risk factors" for BC. Good weight, exercise, don't drink (social) have three kids, breast fed them, don't even drink soda! You just never know....

This time is the most stressful.  Trying to figure out what information you need to help make decisions, plus juggling the emotions of your family, children while trying to keep yourself sane.

You asked for advice, so I will give you some.  But first, I am not sure what you are asking advice on? Whether or not to get the MRI?  Whether or not to get the BRCA1 BRACA2 test? Whether or not to have the surgery without the information?

So, here's my 2 cents.  Get all of the information you can.  Period.  Get the MRI.  Get the genetic test.  I got the genetic test to help determine whether or not to have my ovaries removed. I got the MRI to get a better read on the size of the tumors as well as node involvement.  Having this information, but knowing that the information may change post surgery, was still benefical to me so that I had a better understanding of what my condition was pre-surgery.

Not sure where you got or read that ILC is harder to get rid of.  This is the first time I am hearing this.  Where did you get this info from?  I am curious.

Hi pressmanm,

First I will say it is really overwhelming to deal with all the information gathering that comes with this diagnosis.  I really needed a lot more help than I got, and hated going here and there to get opinions when I was so afraid and emotional.  What's the solution to this?  Perhaps going to a big NCI institution to work with "teams", as you did at Dana Farber.   Sometimes, however, other institutions/doctors may see things differently (or may not). 

There is no one right way to do this, that's for sure!  Here are some ideas:

1.  opinions from other specialists:  an MRI read by a good BC MRI specialist (could give you a pretty good idea of size/location of the tumor(s), another surgeon (as you said), an oncologist (or two), slides from your biopsy read by a pathologist at two different institutions, a plastic surgeon (or two) who may be able to work with your regular surgeon at surgery if reconstruction is considered, a geneticist for advice about BRCA testing

2.  Get the OncotypeDX test run on your tumor.  It gives you and your oncologist much better quantitative information about your ER/PR levels than you get by routine IHC testing, it also gives information on quantitative RT-PCR levels of HER2 (different information than IHC or FISH).  This information could affect treatment decisions.

3.  Decide with your chosen oncologist (not the surgeon) what treatments would help most and the best timing for surgeries/treatments.  This could be important even if you aren't going to get chemo.  Decide together what is most important to know: a) size/location of tumor(s)? then perhaps surgery first is better b) how tumor will respond to treatment? then perhaps a sentinel node biopsy first (so you're sure about the nodal involvement, tricky with ILC), then treatment, then surgery, then more treatment, if needed.  

4.  I wish I had had samples of my tumor removed (before treatment) and had them stored as fresh-frozen tissue, so that if/when new treatments are discovered, and markers for these treatments are found, I could have my tumor tested for the markers.  Just a thought.  I don't know that much about this, but it seems like a wise thing to do.  Worth asking the surgeons/oncologists about anyway.  I even heard that full genome sequencing can be done on tumors, and pathway analysis, but I'm out of my league here.  An oncologist would know, though.

I hear what you are saying about having more questions as time goes on.  It is not easy to know what is best, and ultimately we need to put our faith in the professionals, no matter how educated we think we are.  I hope this post helps rather than overwhelms you even more.  You are in the hardest place now; it will get much, much better for you once your decisions are made.

PM me if you would like to talk.  I wish you the best.  

Hugs,  G.