In shock again!!!!

Nancy2581

Honestly, I don't know how much more I can take of this.  I had my lumpectomy on Tuesday June 24th. I have IDC. I just got a call at 8:30pm tonight with the pathology report.  The lump was 2.8cm when they originally thought it was 1.5cm.  They did a sentinel lymph node biopsy and I was originally told they only took out one lymph node.  No, they took out 3.  One of the lymph nodes showed cancer cells the other two did not.  I am now Stage II.  The cancer is grade 1.  I know my oncologist said if the cancer is in the lymph nodes then we do chemo.  The nurse who gave me the pathology report said not always they can radiate that area.  Do they still do an oncotype dx test if one lymph node is involved or no.  This sucks.

Kalina

Nancy, I am so sorry. It absolutely sucks. I don't know how anyone manages to stay sane throughout this time. There's so many different things to be aware of, to learn, to consider, and I know that we can only move one step at a time. My lump on the ultrasound measured 2.8. I will see in a few days myself where next to turn. Anyway, deep breaths, there are many ways to tame this beast.  When are you seeing your oncologist next? I'm sure there will be others on this board who can give you good information until then. Wish I could offer more.

Kalina

Dancermom1999

Hello Nancy:

While I did not have the Oncotype dx test, from my readings on the board, they can do the test if there are 1-3 positive nodes.  There are many women on the site that did have cancer cells in a lymph node and did have a low onco score and did not have chemo.  Wishing you the best.  Kathy

pupmom

Nancy, I had two positive nodes and did not have chemo, due to a low Oncotype score of 14. I did have radiation after my lumpectomy and am on Aromasin. Doing fine and living large! 

The Oncotype test is just one factor in the decision about whether to have chemo or not. Age is another important factor. Doctors tend to want to give chemo to younger women with positive nodes regardless of Oncotype score. I was 62 at dx, so that was not relevant to me. Size of the tumor is another factor. Anyway, regardless of whether or not you have chemo you WILL get through this and come out kicking on the other side. Best wishes!

Nancy2581

See that's just it.  The tumor was 2.8cm which is huge in my book.  And I am 51 so I know my oncologist will say chemo.  I barely slept last night.  It's like I've been kicked in the stomach all over again.  I hate this disease.  I am so MAD.  It's nor fair to any of us.  Blah, blah, blah I know.  When I first found out I had cancer I was devastated.  Now I am just completely pissed off.  

Nancy

What I don't get is the grade of the tumor was 1 and the mitotic rate was 1 so that's suppose to be slow growing.  If that's the case it had to have been there at my last mammo July 2013 to get to this size.  I feel they missed it and I went  another whole year with that crap growing.  Grrrrrr Mad, mad,mad I tell you.

farmerlucy

Nancy - So sorry for the terrible and additional news. I hate this crap, too.  I would want the oncotype test if I were you in order to confirm info you already know and to shed more light on the agressiveness of the tumor. Hang in there.

teachermom4

Hi Nancy,

Sending a big grrrrr from here too! I was also told my tumor was less than 1 cm but noooo it came out to be 2.3cm. I'm also a grade 1 and my BS said this has probably been growing for at least 3 years! Mammogram never detected it--not even this year. The only reason mine was discovered at all was because the mammogram did show DCIS in my other breast and so I then had an MRI. Voila! IDC in the non-dcis breast. This story is not unusual and is why, in my opinion, it is criminal for us to only be offered mammograms. 

Although I didn't have any positive nodes (that's a whole lotta trust we put into one pathologist, isn't it?), my onco score came back low and no chemo. Although that leaves somewhat wishing there was something else I could do!

Hang in there and let it all out--this disease stinks!

Nancy2581

Thank you to everyone for the support.  It means a lot.  It just seems like every time I get more news on this freaking tumor it's never good - just more bad.  The nurse told me "oh you are still in early stage breast cancer" and it's good only one lymph node is involved.  How is that good?  They told me "oh you are ER+/PG+ and grade 1" that is good.  How is cancer ever good?  Four yes four doctors told me they thought the cancer had not traveled to my lymph nodes.  I had a gut feeling they were wrong, but so wanted to believe them.  

At some point I will get over this anger and take charge, but for right now I am angry.  Six weeks ago I was carefree and enjoying my life - walking my dogs morning and night and now somebody threw a bomb in the picture. So wrong.  I'm just ranting, but it feels good to bitch about it.

Nancy

badger

Nancy, my dx changed four times: from possible DCIS (mammo found clustered microcalcs) to IDC stage 1 (bx confirmed bc) to IDC stage 2 (surgery found a 2.5 cm tumor) to IDC stage 2b (path report noted micromets in a sentinel node).

Surgeon took four nodes in sentinel node bx, two from each side. Onc offered and I accepted chemo so he didn't do oncotype test.

Being newly-dx is one of the hardest times.  You're in shock and it sux big time.  It gets somewhat better once you have a tx plan in place.  Hang in there!  ((hugs)) 

Nancy2581

Thank you all.  I don't know what I would do without your support.  Though I know more about the cancer (well, I thought I did - God only knows what the MO will tell me on Tuesday) I still feel like a deer in headlights you know?  I am petrified of doing chemo though I keep telling myself if I have to do it then it will wipe out ALL cancer cells and that thought alone might get me through it. Although if it truly is a grade 1 tumor I wonder. I'm going to push for the oncotype test unless something else shows up in the pathology report that says otherwise.

badger

Nancy, do you have someone who can go with you to MO appt Tues?  The info comes at you pretty fast, your head is spinning, and it's good to have another set of eyes & ears in the room. ♥ 

Nancy2581

Normally my hubby would come, but he and my daughter are on a trip that had been planned and paid for long before all of this happened.  So I will be making the trip myself.  My sister in law offered, but I'd rather do it on my own (or with hubby - nobody else). I have a list of questions I have written down already.  I am 99% she is going to tell me I have to do chemo.  This is all so not fair to any of us.   

Nancy

Kicks

Take a note pad with you and write down what the Dr says.  Another idea - perhaps better- is to take a tape recorder/smart phone and record the appt so you will have the exact words your Dr uses to go over later.

Jennie93

Nancy, you go right ahead and vent all you like. It really does help!  And this is a safe place to do it where everyone totally understands.   :-) 

voraciousreader

Nancy...I hope I didn't overwhelm you by suggesting that you read all the studies that I mentioned.  I hope you don't mind if I suggest one more thing.  If you plan to go alone....bring a tape recorder.

Nancy2581

No you didn't overwhelm me (I'm already overwhelmed LOL).  Thanks for the suggestion.

Nancy

voraciousreader

I'm sorry!  Until you have an active treatment plan in place that you feel comfortable with..it IS overwhelming!

edwards750

Nancy - we all def share your anger and frustration. Been there, done that. My BS said there wouldn't be node involvement but the Path report after my lumpectomy said otherwise. It was a micromet in the SN. My BS said it would get me chemo. My ONC was ambivalent and ordered the Oncotype test. Thank God she did. My score came back@11- no chemo. 33 RADS instead which was a piece of cake considering. Btw node involvement is not automatic chemo. I had Stage II, Grade 1 IDC. Obviously none of us asked for this but since we have been afflicted at least Grade 1 is the grade you want to have and Stage II is early stage. 

I'm grateful  because of course I know it could have been a lot worse. No guarantees of course but certainly reason to optimistic. 

Good luck and keep the faith! 

Nancy2581

I'm scared now too that they are going to tell me the grade is different or other bad things.  I say that because first they told me my tumor was 1.5cm and now I'm told it was 2.8cm.  I had four doctors tell me they didn't think it had gone to the lymph nodes and it did.  When I asked the nurse on Friday night what the grade was she said it doesn't matter now it's Stage II.  Why wouldn't she tell me?  It just seems like I get told one thing and then it's something else less favorable.  

I'm probably over analyzing, but it's hard not to do when you were given "a little" info and it wasn't what you expected.  You begin to wonder what else is going to go south.

Sorry, probably sounding like a drama queen, but boy this just has been something I have never, ever experienced. I know you all already know that though.  My stomach is a mess and I've lost 6 lbs since this started.  That's ok, I wanted to lose 5 lbs for a long time.  I just am not  very interested in food because of all the stress.  I'm trying to be optimistic, but my mind is evil sometimes.  Thanks for listening.  It does help to share my worries with people who totally understand because they've been there.

Nancy

farmerlucy

I'm sure you had many tell you that antianxiety meds were made for times like these, but if not it bears repeating.  Our minds do tend to go to very dark places. It is terrifying. I wish I had something in the arsenal to make you feel better. It sucks. 

momand2kids

Nancy

I hope you are doing better and the meeting with your onc went well.  I had the same experience-- it was 1.2 on ultrasound and 2.5 in pathology--- I remember that feeling of "what else"????? 

But the grade is important--grade 1 is most like normal cells.  My gyn said at the time--better to have a larger, slower growing one.... I hung my hat on that comment for a long time.  This is scary-- but it sounds like you probably have all the information that you need now--- the pathology is the pathology and now you can make a plan.--- please let us know how we can help you. 

SheChirple

Nancy, clearly this is a roller coaster that we all just want to jump off of.  We take it one day at a time.  Some days good, some not so good.  Hang in there.  You have an army of women here to support you. We all understand the roller coaster, the anger, the determination, and even at some point the thought of giving up.  But, hang in there.  You will make it through.  The toughest part is the first weeks, months and maybe even year.

Nancy2581

I'm doing better ladies - thanks for your support.  I will be starting chemo July 22nd (TAC).  I think so many of you are right - once you know what you are dealing with and the treatment course it gets a little easier (but only a little).

I still have to do a PET/CT scan.  I am terrified they will find something else which I cannot handle.  I also have to do an echocardiogram - again worried about that because my father died of heart disease and my brother just went through quadruple by pass.  I requested to speak to a cardiologist since Adryamycin is in the game plan.  

You know I just had a full blood panel back in March for everything.  All came back perfect.  Humph too bad those kinds of tests can pick up the cancer I have/had because it was there.

Nancy

I do try to hold on to the fact the tumor is grade 1, but the little bastard already moved to one of my lymph nodes which in turn bought my ticket to chemo.

Kicks

Even if something 'lights up' on a PET do not assume it's a 'nasty' but will need to to be checked out.  I had an area along my lower jaw that 'lit up', on PET.  Was into an ENT the next day for a biopsy of the area to be safe even though Dr didn't think anything was going on there.  He called me the next morning with the path report - nothing there.  Don't assume the worst.

With a family history of heart disease, you might want to ask for a MUGA instead of an EKG.  It's more extensive from what I've read.  I had an EKG but others can give you more info on MUGA.

badger

hi Nancy, thanks for checking in.  Glad you have a tx plan in place and it's a little easier.  If you haven't done so already, please join the July 2014 chemo group.  There's nothing like the camaraderie of those going through it together.

I'll also bump a thread for you: More Tips and a Shopping List for getting through chemo.  There are pages of people bumping it up into Active Topics for newbies like you  :-)  so what you want to read is the OP (original post) that's at the top of every page.  It's long, but worth reading.  ♥