advise

pressmanm

I was two weeks ago with a 2cm ILC grade 2.  It all seemed so straight forward now I can't seem to make any decisions.  I met with Dana Faber surgeon last week made a surgery date and just cancelled.  The surgeon left me with making the decision to get an MRI although did not recommend it.  Now I am wondering if I should have the genetic testing.  I don't have breast cancer in my immediate family but there is a history on my mother's side (her grandmother and aunt died of breast cancer) and father's side (sister).  My father's mother died of pancreatic cancer.  I just read that paternal history and father's with history of prostate cancer could be a link to ILC.  My father died at 42 so who knows if he would have had prostate cancer.  His sister was diagnosed at 57 IDC three years ago.  My mother is still young at 62 and my sister is eight years younger 38.  I am 46.   I would be a first degree relative for my daughter although she is only 12.  Does this make sense to anyone?

The biggest issue is not knowing what I am dealing with until after surgery.  I am making another appointment with another surgeon at BI.  Seems like I have more questions than when I started.  Lobular cancer seems like it might harder to get ride of, first or second time around.

Any thoughts or comments would be appreciated. 

momof3boys

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....

momof3boys

Also, if your nodes are clear, they can do an Oncotype test, to determine your recurrence rate. Mine was low-16. I'm still going to do chemo anyway because of my age (43) and because the tumor was larger than 2 cm

CorinneM1

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.

momand2kids

Hi

this is the hardest time--- but getting a second opinion is a good idea... also, absolutely the MRI--you need to know what is going on....

I am also not sure what your question is, but I can tell you--I was ILC grade 2 stage 2--- and my Dana Farber onc considers me cured-- and so do I..... I had a lumpectomy, chemo and radiation--- had the oncotype test--have a low risk of recurrence--- did not have the genetic tests as there has been absolutely none in my family (but in your case, I see that there is bc- if that had been the case for me, I would have done it).  I have two young daughters....

I am fine, unbelievably healthy and looking forward to a long and happy life--you will be too... this is the toughest part......

there is alot you don't know until after surgery--true size of tumor, lymph node involvement, stage grade, her2 status..... they just cannot be certain until they get it out.....

The biggest question before surgery is what kind of surgery do they recommend?And what are yo most comfortable with....

please let us know if we can help in any way--- you are in Boston with some of the greatest surgeons and oncologists in the world......

Gitane

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.