Age at diagnosis

nash

Age at diagnosis

nash

Just out of curiosity, how many of us lobular ladies were young and premenopausal at diagnosis? I've read that ILC is typically an older (post-meno) woman's bc, but I was 38 and premeno at diagnosis.

Also, how ER/PR expressive was your ILC tumor? Mine was ER 49%, PR 31%. Hormone positive, but only moderately so.  

LizM

Actually I had read the ILC is found most often in women between 45 and 55.  I had IDLC and was 49 and premenopausal at diagnosis.  My ER was 80% and PR 75%, with strong staining intensity.

spar2

I was 52 postmenopausal, had taken estrogen for 20 years was erpr+

nash

You know, Liz, you're right about the 45-55 age range. But it seems like somewhere I'd read ILC tends to show up in older women--maybe I'm confusing it with the info that said ILC rates were rising in post-meno women b/c of hormone replacement therapy.

So maybe it's not so weird that I got ILC in my 30's, or at least no weirder than if I'd gotten any other sort of bc. 

figsgirls

I was exactly 42 1/2 at diagnosis - strongly er & pr+.

My aunt also had lobular 13 years ago and she was in her 60s (still alive and kicking!)

figsgirls

And I was premenopausal.

figsgirls

And I was premenopausal.

wallycat

I also read that ILC is more common in women on HRT, thus post-meno, and theoretically that would put them in the 50+ group.

I was never on HRT, I was 1 month shy of my 50th b-day (so technically, 49)  and I was pre(peri)menopause.

My ER/PR was not ranked in percents ...I was a score of 7 out of 8 for both.

Trish03

I was 56 and post menopausal. ER+ greater than 90%, PR+ 30%, Her2 -. I took HRT for about 9 years.

Trish

Sandra1957

I was 48, premeno when dx'd, 4mm ILC er/pr+.  Never have taken hormones, nor the Pill.  No anti-hormonals either.  Still pre-meno two years later.

Mom and two aunts were all post-meno IDC, not ILC like me. 

golfer779

I was diagnosed at 44 and premeno, I'd have to pull my path report for specific numbers relating to ER +,  I've had a couple of doc appts within the week to discuss having an oophorectomy to remove the estrogen producing ovaries.  Any others doing the same?

Carol

karen1956

I was Dx at 49 years 9 months and peri-menopausal.  Chemo stopped my periods then Lupron and ooph slammed me into menopause.  My ER/PR receptors were in the 80's and low 90's (I think).  Karen

trigeek

45 years pre-menopausal.

lag

I was 37  when dx, and premeno.  I had a hysterectomy !

LindaLou53

Had my first breast biopsy at age 39.  Diagnosed at 47 with ductal bc in the same location as the biopsy.  Diagnosed 5 years later at 52 with locally advanced lobular in the other breast which the docs now tell me had to have been present when I was treated for the ductal at 47.  I had undergone 13 years of fertility treatments starting at age 27 in our attempts to have a baby.  Took HCG injections and Clomid for ovulation, Danocrine for endometriosis.  Was put into chemically induced menopause after my second round of chemo for the ductal bc in 2000.

Kestrel

I was 51 at diagnosis but not post-meopausal.  ER+ >90%; PR+> 90%; HER2 negative. 

There is lots of good information about invasive lobular cancer - do a google search for the words.  The British cancer society suggests that ILC, which affects only 10-15% of women, is most common in women in the 45-55 age group.  One of the articles I read when I was first diagnosed suggested that ILC is less likely to be eventually fatal than ductal carcinomas, which is very reassuring for those of us with ILC, although it is more likely to spread to the other breast.

goodrhue

46, premenopausal

nash

Thanks for the replies, ladies. Carol--you asked if anyone else is doing an ooph. My onc wants me on tamoxifen for five years, then wants me to have an ooph and go on an AI for another five years.

Little-G

I was dx with ILC at 45, pre-meno.  I did not want to take any pills and so I opted for an ooph, which was about a year and a half ago.  My ER when dx was 51% and PR was 64%,I guess those are "favorable" numbers?  Next month is my annual MRI, since it was lobular, no mammos for me. 

g

nash

Little G--wanted to pass on some info that my onc told me. She said that ILC gals are at risk for a new primary of either ILC or IDC (or IBC, for that matter), and thus she has me doing both MRI and mammos, so that I'm having some sort of imaging every six months. I know MRI is more sensitive than mammos, but just thought I'd mention it.

I'm actually going for my first ever digital mammo next month. I'm excited about the new technology, which is supposed to make reading the films much easier for the docs. 

SusanLB

I had just turned 49. Er+ pr+and pre-menopausal

NancyNY

I was 54 and had been on HRT for 7 years.  I was strongly E+ >90%  Pr+ 90%  Her2-.

wishiwere

Dx at 49.5 years, with 1.7 cm IDC that was ER/PR both 75 % and also had a 1.0 cm ILC that was ER 90% and PR 70%.  both were Her neg.  I've never had HRT's, but was peri when this all started.  Had started missing periods @ 3 mos prior.  Had 2 more periods 3 months apart with the last one the day after my first chemo and none since.  Tests show I am now Post meno.  So who's to know if it was chemo, or life that pushed to an end.  Either way I'm doing arimidex now.

Anonymous

I had just turned 45 at dx time. I was pre-menopausal. My tumors were 95% ER and 75% PR.  Her2neu was negative.

Little-G

nash...I didn't know that.  They sent me a couple of mailings from the hospital saying it was time for my mammo, but I tossed them.  I figured the MRI would take care of that??  But I guess that makes sense.  Of course a different type of cancer can happen.  Hhhmm.  I guess I'll ask the onc. in June.  Thank you for the heads up!  I noticed reading the posts it seems alot of women had high ER/PR numbers, does that have any bearing on tx?

g

Gitane

Hi Nash, I'm glad you asked a question and all us lobulars reappeared on the board. It's nice just to check in and say Hi. I was older, 57 years old. ER+ PgR-, the path report just said "strong diffuse staining" for the ER and no staining at all for the PgR. I'm finding the PgR- seems to be almost as rare as pleomorphic, and the combination of PgR- and Pleomorphic is almost unheard of. Yipes. I was also under the impression that the ILC diagnosis came a bit later in life, but it doesn't seem so for the people posting here, does it?

suzfive

I was 1 month shy of my 50th birthday when diagnosed and perimenopausal. Never took HRT. ER+++ PR+++.

pepperpot

I was 44 and premenopausal,er and pr positive,dont know percentages though...Pepperpot x

nash

Pepperpot--your ILC tumor sounds like it's of the pleomorphic variety, being grade 3, HER2+. Did your path report specify pleomorphic? A lot of labs don't differentiate the subtypes of ILC, so the report may not have that info on it.

jengoll

I was dx at 36. premen. stage II