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

Hi BW,

All I know is that I am the third in my family to have ILC and we all were in our early 40s when diagnosed and pre-meno. Hugs, Mazy 

I agree with Laura that it probably has more to do with the time it takes to discover it, rather than when it actually starts to establish itself in our bodies. ILC can grow linearly, rather than in a more obvious tumor.

I was diagnosed with ILC almost exactly one year after having a total hysterectomy. I had had 12 years of mammograms previously, with no indication that there was a problem. In fact, my breast surgeon said that most radiologists would have missed my cancer this time around because it was so hard to detect -- and it had already spread to 7 lymph nodes!

No one ever mentioned to me that mammograms aren't 100% accurate. Plus I'm thin, I exercised regularly and I eat a very healthy diet. I'd always assumed, as did my friends and family when I was first diagnosed, that if I did get breast cancer it would be caught early. So it was a huge shock to have done everything right and still be diagnosed with Stage 3A ILC. 

BWalker----- ILC is said to be "sneaky" and harder to detect, doesn't always show on imaging (mammo/US/MRI), and isn't always felt. (same situation with LCIS). My mom did have a lump with her ILC, was post menopausal, and had taken HRT previously to help manage menopausal difficulties. Did it cause her bc? We'll never know for sure--we had other family history of bc (her grandmother had bilat masts) so she may have gotten it regardless. My LCIS was found by suspicious microcalcifications on mammo--I had lumpectomy, took tamoxifen for 5 years, and am still on high risk surveillance with alternating mammos and MRIs, breast exams, take Evista for further preventative measures, and am doing well.  My mom is now a survivor of over 22 years without a recurrence and slao is doing well.

Anne

I was 38 at diagnosis as well.

I was 48 and pre-menopausal when diagnosed.  Mammo missed it, and my Gyn, Radiologist and surgeon all had problems finding it - both on physical exam and US.  If it wasn't for strong family history of BC, I probably would have ignored it.  (Radiologist wrote, "low level suspicion" for cancer on his US DX, but recommended a biopsy.)  I can see how women and their doctors would miss it until it got much larger.

Mary

Well, well well, marvellous, in and out with Day Surgery. Left breast has had the lumpectomy, is slightly uncomfortable but I did not have to have the lymph glands removed ! Sentinel node biopsy revealed no abnormality. I won't have the pathology result until I see the surgeon next Tuesday so I will update then. The anaesthetic was good, I didn't have any nausea or vomiting and believe me that is a huge plus.

cdean1971:



Seems there are more and more young women got BC dx today...and I read something on internet saying the BC women are getting younger.



You will be fine!

At age 43 I was diagnosed with DCIS in left breast (resulting in mastectomy) and was diagnosed again, at age 52, with ILC in my remaining breast (resulting in mastectomy).  Tested negative for the mutaged genes.

Hi delaine,  Big hugs and welcome to the ILC forum.  You are rather hidden here at the bottom of this thread; I'm glad I found you. You may want to start a thread of your own here on the ILC forum to introduce yourself so others find you.  We are an exclusive club here because ILC is so much more rare than IDC.  It's a good place to meet others who have experience with this. 

I also read that you are in Canada.  My husband has family living in the Montreal area and I loved it there when we visited.  There are Canadian ladies all over this site.  I'm sure you will find them very helpful.   

My thoughts are with you as you deal with all this.  HUGS, G. 

Hi,

count me in as another pre-meno--- dx last year --after 12 years of clear mammograms--showed up in a routine office visit breast exam--- ilc is slow growing--they think it started years ago---- never took hormone replacement, never on birth control pills, no family history--it was a stunner--- never showed up on a mammogram.  No nodes- but a 27 on the oncotype-so I did lumpectomy, chemo, radiation and now femara..... I feel very lucky----  but I don't trust mammograms as the sole source anymore--- I can get an mri once a year---- along with a mammo and I let just about anyone who wants to do a breast exam!!!!

Well, I was diagnosed at 45.  With the news stories lately about BPA it really has me thinking about that.  BPA was originally developed as an estrogen replacement.  It was abandoned for that purpose in favor of DES (another great idea).  Then it began to be used in plastics.  I used to drink a lot of soda - 3-4+ cans a day for many, many years.  And now I realize that it had BPA in it from the can lining.  It really makes me wonder if that is contributing to what seems to be a rise in younger age at diagnosis.  I've read that BC in general has increased 40% between 1973 and 1998.  There has to be a reason for that, and hormone replacement therapy can't account for an increase in pre-menopausal cancer.

Hello rreynolds1,

Finally, I have found someone whose story is almost exactly like mine.  I was also diagnosed in February, 2009 at age 57 with ILC.  I had a lumpectomy, breast reduction (was a DD, now a small D) and then radiation.  Have been on Femara with no SE's.  However, they did not get a clear margin so I had to go in for a reincision 10 days after my first surgery to take out more tissue to get a clean margin, which they did.  That really scared me since I had so much tissue removed.  But maybe the tissue that was removed was in a different area than the cancer area. My oncotype was 19, so I was in the grey area but chose not to do chemo after discussing everything with my oncologist.  Did you have an oncotype done?  As I read these forums, so many women have had mastectomys and chemo, I often wonder if I chose correctly.  Thanks, everyone.

I was diagnosed at 40 yrs.old and pre-meno.  Found lump through BSE.  At 40 I guess I'm considered young  No strong family history...paternal grandmother had BC.  Very healthy lifestyle.  I can't ask why because nothing makes sense!

Mary 

I was diagnosed with invasive and non-invasive lobular breast cancer 1 year ago (age 40) 11/2008 - Stage IV  metastatic and in my spine  . This was not picked up on the mammograms over the last 4 years and doc kept saying it was a cyst.  I finally told doc I wanted cyst removed and was sent for an ultrasound to take to breast surgeon - if not for the ultrasound I would not have been diagnosed with a 8cm tumor!  This was a shock to me - had chemo, bilaterial mastectomy (with removal of 21 lymphnodes), and radiation.  Was placed on Femara since my body would not metabolize Tamoxifin,  Required to remove ovaries since they cannot come back to life on this drug.  Have had battle with gyn to remove ovaries for fear of osteroperosis (been on Zometa IVs monthly while taking extra Calcium and Vitamin D supplements and I believe cancer outweighs this issue)  - and finally on 11/23/09 they are coming out - complete hysterectomy (LAVH).  I can't wait for I have read and while talking to breast surgeon that women on hormone blockers sometimes have problems with the other female organs. After this battle with gyn I am definately looking for another in the new year - a long with a new start on life!  Has anyone else had difficulties with doctor's not agreeing with one another on diagnosis and preventative procedures?