Topic: Just found out today -- what do I need to ask?

Ok they will try to do a clinical staging by finding out from your biopsy if your IDC is hormone positive (estrogen or progesterone), her2 positive, all three positive or some combination of these positive, or triple negative (all three negative for receptors).  Triple negative is a concern for younger women because it tends to be more aggressive which is already an issue for younger women.  You hope to have a cancer that is er+ and/or pr+ because they are less aggressive and there are more treatment options.  They will find out your grade (1,2,3) with 3 being the most aggressive because these cells grow faster and are the most unlike normal breast cells.  One thing you may already know is that IDC is the most common BC so you are in good company.  It is invasive so chemo is likely especially with several spots. I ended up having two separate IDC's one in each breast.  You will be going through lots of tests like MRI and CT to see the extent of the cancer and if it has spread (metastisized) to any other organ.  These are standard and are not being done because they suspect anything but to rule things out.  Get a copy of your pathology reports and tests and bring the info here and the ladies will explain it all to you. Take someone with you to all appointments so that they can ask questions and hear things that you may not be able to focus on right now.  It will feel like a whirlwind at first but once a treatment plan is in place things will settle down.  I know others will be along shortly to give more advice. Best wishes.

As Nene2059 said...try to take someone with you!  I was taking notes and thought I was pretty together at my surgeon appt.  It sort of all evaporated by the time I got to the parking deck!  My husband was able to add things that I swear I didn't even hear!  I've also been carrying a notebook around to jot down questions as they come to me later.

I'm sorry you are going thru this but glad you are here on this board!  This has been a great place for research (when you are up to it!) and venting.

Wendy 

Definitely agree with Nene2059 and paigelise - take someone with you to take notes. Once you find out the details and what plan of action they are proposing then take some time to review what has been advised.  I know that having gone through this, I wish I had taken more time to explore all my options. Would I have done anything differently - maybe - maybe not.  

You will get through this. The majority of the people on this site are very supportive and helpful.  No question is dumb, so feel free to ask and ask and ask.  

You will be in my thoughts and prayers.

Blessed Be 

I met with the breast care navigator yesterday.  She went over the pathology report with me again.  Cancer was found in all three locations.  IDC with some lobular features, so they're doing some further testing to make sure it is not a lobular cancer, but they're pretty sure it is ductal.  The third spot that was biopsied was probably a lymph node, so that makes me a bit nervous.  Also, the 1st sample was 0% for ER/PR.  They're sending the 2nd sample to a different lab to have it checked for ER/PR and for HER2.  Anyone know what the chances are of it being positive in the second sample?  Being negative also makes me nervous, since it seems to be more agressive, and I keep finding posts in different places of triple negative people who had double mastectomy's only to have mets appear a year or two later in other places.  And obviously I don't know what the HER2 status is.  If one is ER/PR negative, is it thought to be better treatment wise to be HER2 positive, negative or does it really matter?  I'd love to hear from any long term survivors who were triple negative and have not had mets appear down the road.  The navigator said they wouldn't know staging, grade etc until after surgery.  But the pathology report says all three samples were poorly differentiated, which I gather is grade 3 from what I've read.  Does that sound right?  This all seems like bad news.  I meet with a surgeon this afternoon, and then she said I'd probably be meeting with a medical oncologist and radiation oncologist next week to get my treatment plan all worked out.

I guess we're sisters, Ihatescreennames, since I also found out on Tuesday Nov. 3, a day before you.  I'm less ahead than you, though, since I have my next round of tests on Tuesday.  All I know is the size (3 cm) and the location (1/2 way to armpit from my nipple on the left side).  Parents, 2 kids and close friends know, but haven't told anyone at work (I teach gr 5)...I feel like the next 5 stages of grief are yet to hit me...right now its just denial and disbelief.

I'm 40 and I live in Belgium, so everything is in French--an added challenge to my coming to grips with the technical aspects of this, I tell you!

 Hang in there, Ihatescreennames, and lets make sure to stay positive together!

Hello,

I am triple negative, clear lymph nodes. at first i was VERY SCARED, But after doing more research and ALOT of praying, i know that i will be a survivor.  triple negative is NOT a death sentence.  i get a mammo every year, so it was caught early.  Robin Roberts on GMA was triple negative. mawwhinney gave you some excellent information!!!! ask a ton of questions and if ANY of your doctors get upset with your questions GET another dr.  you have to be comfortable with your doctors.  my surgeon is wonderful, my radioligist is excellent and my oncologist studied at Johns Hopkins and his specialty is Breast Cancer.  i would also contact the american cancer society, they will give you alot of information.  stay strong, live long  

Oh and if you are Her2+ feel free to PM for advice. Her2+ indicates a more aggressive cancer, but there is good news too.  It is a more positive diagnosis if you are er- and pr- to get a her2+ path report. Being Her2+ means that you will have more treatment options available to you than if you were triple neg. Currently, any ++ path can be treated, it is the negatives that are especially tricky.

C