Question: Why does ILC mostly happen to post-menopause women?

Gitane, thank you so much and I wanted to respond to BWorrier's first post b/c I sat down with my BS.  According to him, lobular is not any worse, but it IS harder to detect on scans, so it's sneakier and thus usually found much larger.  He said my IDC in my other breast was "scarier" than this new one b/c the new foci are so tiny.  He told me it was a brand new primary, so he wouldn't know what the receptor status was until after my next surgery.  They didn't grade it yet - there wasn't enough of it.  He pretty much said what you did - that either 1) it was larger, not detected and summer chemo and tamoxifen worked on it or 2) it is different and non responsive to chemo and/or tamox.  They won't know that until my next surgery.  He indicated the main difference in IDC and ILC is where it ends up developing and mainly that the disadvantage of the ILC is that it tough to detect on scans (and smaller, earlier).  Hope this helps. 

I'm 53 dx with ILC Stage 1 (right now) grade II.  I had ovarian cysts since I was in my early 30's lost one ovary and they put me on the pill for 10 yrs to save me from going into menopause early, then I lost my second ovary so  I did go on HRT's because the effects of menopause were so severe, then I went off for a while and got vaginal atrophy so back on estrogen until July when I found the lump.  My dr. says I did nothing wrong but it makes you wonder.

I had my biannual mammogram on my 57th birthday - ILC 1.2cm node negative BUT grade 3 HER2+ ER+/PR+ - so basically triple positive. My oncologist said I was lucky it was picked up on the mammogram - it was quite clear. The surgeon said it could have grown in as little as 6 months. It was not palpable by me and the surgeon said you would have to know what you were looking for.

 I had a wide local excision and sentinel node biospy. Just had second treatment of TCH this week - this is because of the HER2 status. Herceptin for 12 months , 6 weeks radiation post chemo and probably aromatose inhibitors after.

I asked the oncologist if my taking the pill until I was 52 until after menopause, then followed by HRT for 4 years would have contributed. He said there is only a slight increased risk.

Yes, triple positive ILC seems to be in the bottom 5%. It was 90% ER+ and 95% PR+, if you can trust the pathology. I'm not sure what tests were run, I plan to find out. My old GP arranged for the mammograms to be around my birthday so I wouldn't forget - that's OK, I didn't find out the result for nearly 2 weeks, the day before our wedding anniversary - that's what you get with a public health system.

You have to look at the positives in that it was found very early and hadn't spread as I was not in the habit of examining my breasts as they are reasonably lumpy anyway.

Even though it's HER2+, that is also good in a way because of herceptin being available. In New Zealand EBC women have had to fight to get this treatment. At least in Australia the goverrnment pays the $70,000. Being hormone receptive is also good as they have the other drugs to throw at it. BUT, if I was triple negative, I'd be very very upset as they can only do chemo as there's no specific drug that will fight it.

I have ILC also, as far as BCP's I'm not sure they have much relevance. I took them for approximatly only 2 years. Then I got my tubes tied, cut & severed so I never had to take the pills anymore. So, I'm not sure they are the cause.

I was just diagnosed in July with ILC at age 49, premenopausal. I guess it's always a shock, but I had had years of boring negative mammograms and I never worried much about this except that I am of Jewish Ashkenazi descent (more common) and have a few distant cousins who had BC. I had the BRCA gene test and am awaiting the result but don't expect it to be positive. Mine was found during my routine mammogram by a smart mammographer who chased something suspicious with a sonogram. Then it all just happened so fast. Ten days later I had a mastectomy due to two tumors distant from each other, making lumpectomy difficult and cosmetically not really worth it. Am now awaiting onc appts to see what the next step will be. Oncotype came back at 17, and nodes were neg, but there were multiple sites and the grades were 1-3, varying so not sure if there'll be chemo or not. Kind of nervous about this decision but am trying to stay positive.

I was reading the thread above and noticed some common themes. I know this isn't scientific, but quite a few of us have had hysterectomies and then BC appears soon after. I had mine in Jan of 2008 (kept ovaries) due to a mammoth fibroid that was interfering with my bladder. (I used BCP's for less than a year of my life, but my mother took DES when she was pregnant with me and I've always worried a bit about that.)

 Sorry I'm all over the place. Thanks for your replies,