Size and number of positive nodes

JudyO

Hi...I am new to this discussion board. I have read most of the discussions for lobular and also for stage 3, which I am. I think my case might be a little unusual. My 2.2 cm, low grade, ILC, had 7+ lymph nodes. It is ER+/PR-/HER-. Most of the lobulars are much larger and don' t have so many positives nodes. My surgeon thought mine was a slow grower but my oncologist said size doesn't matter. Any thoughts out there?

nosurrender

My lobular was 2.5 cms with 4+ nodes. I had extra nodal extension. They can tell from the Mitosis on your path report whether it is a fast grower or not. If you have a 1 or 2 it is considered less aggressive.

You are right, Lobs are usually bigger than ductals. It is the grade that is more important than the size.

GOOD LUCK!!!!

g

JudyO

What is extra nodal extension? I had a 1 for mitosis and a 1 for aggressive..that gave me the grade 1.

JudyO

Also saw you joined Dec 2004...are you 4 years out...I am so afraid of this...given a 50% chance...I have a lot of good years left in me...

YATCOMW

Judy O

I had a huge ILC tumor with some IDC thrown in....my tumor was 8 X 6 X 5....practically my entire breast.... in fact they couldn't cut it all out--- had positive margins everywhere.  I had at least 17 nodes with cancer.  I had a grade 3 vs. your grade 1.

But here I am 4.5+ years out and doing great.  I had a bunch of scans in Oct/Nov and no cancer in sight.

ILC takes well to hormonal treatment.... that is our blessing. Hang in there.  You'll be fine.

Jacqueline

nosurrender

Hi Judy,

I have had breast cancer twice. I had two primaries, which means they had nothing to do with the other- sort of like getting struck by lightening twice.

The first cancer was a triple negative ductal in 2001.

The second one was the lobular in 2006. 

 Extra nodal extension means that when the surgeon went in to take out the nodes, he found cancer cells outside the lymph nodes floating around.

You are grade 1- that is EXCELLENT. I don't know where you get the 50% chance figure- you have much better odds than that- really!

Oh wow Jacqueline! What a tumor! So glad to read how well you are doing!

JudyO

I was surprised at the 50% chance. It was given to me by my oncologist. I questioned him since I thought from my research this was maybe what it would be with only surgery, he said no that was the % after all of the treatments. I had my breast removed, did dd4AC,4Taxol, radiation to the whole area and have started arimidex a month ago. He said without all of this treatment it was most likely in my body and I didn't have any chance. I had a bone scan and a ct body scan before treatment, all was clean on that. I also had a breast MRI before treatment since the lobular can be multifocal/bilateral...that was also clean other than the one .

wallycat

JudyO, in your initial post, you said your surgeon said it was a slow grower but oncologist said size doesn't matter....that statement doesn't seem to make sense in my head.

A slow grower, in theory, is the mitosis rate (0-1 was mine).  Size is only of importance to determine how fast it grows if you know when it first started, but no one can tell how long it is before the dx.

If your tumor is large, that may simply mean it was in the making 5 or 10 years before Dx, but it grew at a slow and steady rate (or fast and quick and only 1 or 2 years or so before dx...depending again on mitosis).

(my sig line tells you my dx).  The way the radiation oncologist explained grading a tumor was based on several things not just mitosis....and that determines the grade.  He said that lobulars tend to be 1 or 2 simply by nature of their shape and the criteria they use to ID  tumors.

I don't know enough about any of it, but my first onco and I were both shocked to see my oncotypeDX score at 20.  That is intermediate.  I had thought since my mitosis was a 0-1, it was a mild, quiet tumor.  That score did not make me happy.  I had no node involvement and no chemo and when I read that tamoxifen can make ILC tumors unresponsive, I totally freaked.

I guess like all of us here, I want a guarantee and I want to "KNOW" what will happen, but since I did "all the right things" to not get cancer initially, I realize it is all a crap shoot.

I just hope and pray that if mine comes back, it is far enough out that there are better detections, drugs and more hope.

Best to you!

JudyO

Hi wallycat...I from Wausau, WI....I didn't have the oncotypeDX since I am advanced with the number of lymph nodes. I think my surgeon thoughts were that it was a slow burner...growing slowly for many years...and that caused it to stay small for the number of nodes....my oncologist comment was more that no matter what size it filled up the lymph nodes. I know grade also looks at how much the cells look like a normal breast cell and how much it has changed. The more it has changed the more it is aggressive and the higher the grade. Just a thought maybe the grade 2 and the mitosis of 1 means you had a slow but aggressive tumor...causing the oncotypeDX to be 20.

wallycat

Yes, I feared that my tumor must be less than passive with a 20, but not enough to know if I should have done chemo.

I'd always hoped low mitosis meant a calm cancer, but I know enzymes, alleles, proteins all play a part...and sadly, not enough is known about some of this.

ER/PR + is less aggressive than HER2neu+ so, I focus on that and the fact I had a bilateral....