ILC and high Ki67 - what to do?

I had a Ki67 of 61% and am about 2 1/2 years out - so far so good. I had IDC, not ILC, so am not sure about the difference in chemo response.

I say just throw every weapon you've got in your arsenal at it, then you'll have peace of mind that you did everything you possibly could, and there will be no "what if's?" later on down the road. Good luck!

~Janine

Steff66,

Most of us understand your fears.  Once you've gotten that cancer dx then you have to spend some time wondering what your future looks like.  It takes a while to get to the point of acceptance; the path report "is what it is".  Then it becomes a case of how do I want to live out the rest of my life whether it's 5 years or 55 years.

My Ki67 is 30%.  Not quite as high as yours but I have other marks against me such as grade 3, pleomorphic ILC, BRCA + and significant lymph node involvement.  But I made it through chemo, surgery, rads and am now on Aromasin.  With our ER/PR + tumors we have a very good prognosis with the use of an AI (Femara, Arimidex, Tamoxifen or Aromasin).

But your comment about the prognostic value of the Ki67 score got me curious.  Like so many areas of BC, the studies I found many old ones and many that are at a very high level and, in my opinion, worthless for extracting information that pertains to us as individuals.  That's the problem with a lot of these studies -- reading through them is like look for a specific apartment in a city while you're flying over in a plane at 30,000 with a set of binoculars.  They seldom break down into our specific situations and path reports.  Another thing to remember about studies is that there are many factors missing.  Where the ladies in good health, practice good eating habits, continue to take their meds, what specifc tx did they have?  Lots of variations since we all have our unique genetics, unique treatments and lifestyles.

But I did find an abstract from the 2010 ASCO (American Society of Clinical Oncology) conference that was interesting.

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=53846

In this study high Ki67 is considered > 51% and these are the two sentences that I think you'll find most reassuring. 

"Ki67 was associated to tumor size > 2 cm (p = 0.02), negative ER (p = 0.000), negative p53 (p= 0.048). A tendency was detected for relationship to negative PR (p = 0.06) and hypodiploid DNA (p = 0.071). We noted higher frequency of triple negative immunophenotype in the groups with greater expression of Ki67 (8.7%, 10.2%, 10.2% y 28.5%) (p > 0.05). "

So the norm, with a higher Ki67, is a larger tumor than yours and negative PR/ER.  And that makes sense to me.  It is know that triple negative cancers are more aggressive.  Luckily for those ladies, chemo works well against them since they don't get any benefit from AIs.

My personal takeaway is that my Ki67 isn't a very effective prognostic tool for my PR/ER + cancer. 

I think you can feel very positive about your situation.  They found the ILC when it was small, no lymph node invasion and probably clear margins during surgery.  In the meantime you are doing aggressive treatment by going ahead with chemo.  Technically, my tumor had no response to chemo but there was a physical reduction in the size of my lymph nodes.  I took comfort that it was doing something even if it was as much as I would have liked.  So I'm thinking it killed those rogue cells that might have been floating around.

You are doing everything you can and you should feel very good about that!  I believe your prognosis is great!

my ki67 was obscenely high, in the 70's? in my breast biopsy, grade 3, path report didn't use the word pleomorphic but sounds like it would have fit.  too large for a lumpectomy from the start, the tumor doubled in size in about 3 weeks

was staged 4 after bmx due to the level of nodes involved

liver biopsy 4 months later, ki67 dropped to something in the 50's

both biopsies were ER+/PR- and her2-  ER wasn't real high, and PR = 0

AI's (femara, faslodex) kept it at slow progression for 4-5 months each, aromasin messed up my liver tests after only a month, and tamox did nothing 

chemo, however, does work for me- Xeloda and Abraxane both yielded regression; my onc said my cancer appears to be "chemo sensitive"

my "disease burden" has never been high since the bmx.  never have had any fast progression

I suspect the high ki67 may be part of the reason the chemos worked- fast dividing cells?  so, for me, it seems to have some meaning.

hope the silver lining is that the hi ki67 means highly chemo sensitive ILC!