Age at diagnosis

SusanG

I was 41 1/2. Never took HRT, but premenopausal, and did take several different types of birth control pills trying to control endometriosis. Hated it. Bled for months at a time, finally told the gyno I was stopping BC and would just deal with the pain. Then I found another doctor who is planning to do a hysterectomy...all this just before discovering the ilc.

Mine's ILC, ER+, PR+, HER-. Don't know the rest yet - lumpectomy was just last Friday and don't have the results yet from the node biopsy.

Su

collector

I am 60 and got my diag 4/08.  I had been on HRT for 8 years with no family history of bc.  Had r lumpectomy and now on T/C chemo for 4 treatments.  Then 7 weeks of rads to follow and probably 5 years of Femara.  My Oncotype score was 17 and the 2 oncs I saw both recommended chemo without even knowing the Oncotype score.  My biggest fear of course is a new primary in the left breast.

PeggyDixon

Hi Nash,

I was 48 and premenopausal. I think the tumor had been there for at least a couple of years as I felt something earlier but, like many ILCs it didn't show on mammograms or ultrasounds . My tumor was 90% ER+ and 60% PR+. I always hope that the high % ER/PR+ balance out my 12 positive lymph nodes...

Peggy

Anonymous

my mom was almost 58 at time of diagnosis of ILC (she is now a survivor of over 21 years and doing well!); I was diagnosed with LCIS at age 46.

Anne 

spar2

I was 52 when diagnosed and have been ned for 3 1/2 years

jane59

I was 49 at dx and perimenopausal, er weak+, pr moderate +. Her-

mreilley99

nash,

  i was 48 at dx..no history in family, not overweight,never smoked, non drinker..highly er/pr pos  her2 neg. 

Fitzy

I was 46.5 at dx in 04, pre menopausal, very fit, no bc history in family. Had kids late, I was nearly 38 and 42 & had thyroidectomy in 93. Still NED, on Femara, had prophylactic mastectomy Feb this year

snicklefritz

Hi ladies!

I was 44 at dx with pleomorphic lobular.  HMMM, just wondering if bearing first

child after the age of 30 is a risk factor?  I had my first child at 32, second at

35.  Was not a drinker, drug taker or smoker, not overweight ever - tested negative

for the BC gene also.  Very interesting trend I see with alot of the ladies here.

Be that as it may, every day is a good day,  Love, Mary Jane

Ihopeg

I was 46 at diagnosis. ER90% PR75%. I was pre-menopausal. I had been on birth control pills for 13 years up until diagnosis.

karen1956

I was just shy of my 50th b'day at the time of Dx.  perimenopausal.  3 kids (and breast fed for years!!!) but 7 pregnancies.  Highly PR and ER+  Noi family Hx of BC.  Thin, non smoker.

coonie

I was 44 and pre-menopausal. However, after turning 45 in March and finishing chemo, I became 45 and POST MENOPAUSAL.........had those ovaries jerked out What a difference a day makes.

melmedic06

i was 52- post menopausal and on HRT for 9 years- i still have my ovaries but as the doctor in the ER was nice enough to announce to say maybe 50 people when i was in for my gall bladder "your ovaries are like two dried up olive pits" THANK YOU SO MUCH- i did not have them removed - did have a vag hyst though- i am ER/PR+ 

ILC   october 04   0.9cms  0/5 nodes  lumpectomy  radiation  arimidex

DCIS  august 05  found only on biopsy- surgical tissue negative-no DCIS-lumpectomy- radiation and continue on arimidex

ValerieF

39; premenopausal

Fourth premenopausal woman in three generations of my family to be dx with breast cancer (My aunt had IDC--she thinks--my mom's type is unknown (she died in 1983), and g-grandmother obviously unknown).

susan13

42 at dx, 1 child born 5 days before my 41st b/day.  They say the cancer has been there "for many many years".  I am a believer in hormones playing a part in bc. I think mine went awire during and after my pregnancy!

lolmarsha

 Dx at 59. er+ 5, pr+ 70 .  Her? post menopausal. Had kidey cancer 7 years before, skin cancer 19 years before. I see my #'s are smaller?

Anonymous

I was 60 at the time - but had been on estrogen (only) for quite some time - I wish I could rethink that decision!

Seabee

I'm 66 and hoped I'd dodged the bullet, since my mother was diagnosed with BC at 45 and had risk factors which suggested that there was no genetic predisposition. She was the only person in the family who had it before me.

 Then I foolishly let a gynecologist talk me into HRT, even though I had none of the symptoms it is supposed to treat. I think it was supposed to keep my bones from turning to mush. I wasn't on it long before the news broke about it apparently predisposing one to BC., and of course I stopped taking it immediately (and stopped going to that gynecologist as well!), but I can't help but think that taking it may have had somehting to do with my developing BC.  

This experience (among others) has made me wary of doctors, and I've done everything I can to cross-check their diagnoses and recommendations this time. So far I seem to be having better luck, but I'm gearing up for the oncologist. I have a feeling I'll have chemo recommended in addition to rads and hormone therapy, and the Dr. had better have a convincing rationale for that before I'll even consider it.

ittybittyme

I am 42 years old and diagnosed May 2008. My aunt had ductal cancer 10 years ago and going strong! She was also 42 years old.

kim2005

43; premenopausal; very healthy; birth control pill 20 years; 3 years infertility meds; ER/PR+

Pamela43

I am 43 & was diagnosed last October.

MaryEV

I am 50 and was diagnosed on Dec. 30, 2008. Two tumors in left breast, both under 2 cm. Having bilateral mastectomy sometime in the next few weeks. Just waiting to meet with the plastic surgeon on 1/21/09 to discuss reconstruction with implants at the time of surgery, then we will schedule the mastectomy.

I do not know the stage or hormone receptivity yet. My doctor thinks that surgery alone may be enough but I will see an oncologist a few weeks after the mastectomy.

Mary

glendag

46, premenopausal, stage II

minuet

I was 41 at dx now 3 year post diagnosis. Stage 2a ER+ PR+  and pre-menopausal.

MimiS

Hi new friends,  I am also pleomorphic...just had a lumpectomy on 12-23-08 and I have just discovered this threas of ILC ladies.  I guess I am PILC.  Finding info on this ILC is amazingly difficult so I am thrilled to get all I can from you ladies.I had just turned60 when I had my lumpectomy in Dec. although I found the lump myself in late Sept and UCSD fiddle farted for months b efore doing a n MRI finally in Nov.  I am Estr. 100% Prog5% and Her2neu plus1. and I am not sure what this all means.  My tumor is being oncodx tested presently  and the waiting is very nerve racking, as I found the lump 5 months ago now.  My onc B. Parker is leaning toward the hormone therapy rather than chemo but I am notsure I agree with that...what do you all think??  My second opinion onc(my hubbys onc for adv. prostate ca) was strongly in favor of chemo.    I took bc pills for 10 years orloinger then compounded estrogen replacement until my menopause at age 53.  Has any med center done any studies on ILC?? And what is the cutoff score for the oncodx for you ladies?? Did you go for chemo with scores int the high teens??Or low 20's...I just know I will score in the grey area between 11-25   what is the Pgh???Can't find it on my path report.  Lastly, (you can tell I am a newbie)  what is the research, if any, between the AC chemo or the TC for PILC???

nash

Hi, Mimi. Welcome to the boards. I am a pleomorphic ILC gal who happens to live in the San Diego area. Let me start off by saying you are very fortunate to have Dr. P as your onc--she wasn't taking new patients when I was diagnosed in 2007. Apparently that's changed--good to know. Anyhow, between myself and my late Stage IV mom, I've been to a lot of oncs in the area, and I highly respect Dr. P and her judgment. She's very smart and very experienced. She was my mom's second opinion onc (we live in N. County, so UCSD is too far to drive for treatment), but like I said, I couldn't get in with her when I was diagnosed. Sorry to hear UCSD took so long to diagnose you, though--that's a little disappointing.

Also sorry to hear your husband is dealing with advanced prostate cancer.  Is his onc at UCSD, too?

OK, on to your questions. First,  your receptors--ER/PR/HER2. You are very strongly ER positive, barely PR positive and HER2 negative. HER2 has to be +2 or +3 to be considered positive. It's a protein that the tumor overexpresses that makes the tumor more aggressive. If you are HER2 positive, then you can have a drug called Herceptin that blocks the protein pathway. But you're not HER2 positive enough, even though there is some overexpression going on. At least that's the way I understand it--you can double check with the girls on the HER2 board just to be sure.

Second, it will be tough to make the chemo vs. HT only decision w/o the Oncotype score. Although the Oncotype is only a piece of the puzzle, it sometimes can help if you're not sure what to do. In theory, with a 100% ER positive tumor, you should do well on an AI. If your Oncotype comes back in the low numbers, say like an 8 or a 10, you can rest easy about doing HT alone. It gets less clear when you're in the high teens.

Which brings us to the next question of where were the rest of us PILCers scoring and what did we do? I scored an 18, but I was also only 38 at diagnosis, so I had four docs tell me I had to do some sort of chemo. Also, my ER/PR percentages were in the 30-50% range, and I wasn't comfortable with HT alone with those percentages. Nor were the docs, even though anything over 10% is supposed to respond to HT.

That being said, my late Stage IV mom's original IDC tumor was highly ER/PR positive, and hormone therapy never worked for her--she always had to be on chemo. Nothing with cancer is 100% absolute, so that means you have to make the treatment decision that you are comfortable with, after weighing in the oncs' opinions. Also remember that Dr. P is a breast cancer specialist, and the second opinion onc probably isn't.

I don't know what Pgh is--was that something on the Oncotype website?

Research studies about ILC--those have mainly been done by Dr. Cristofonlin at MD Anderson. If you google him and ILC, the studies will come up. He pretty much concluded that ILC responds better to HT. But then again, nothing is 100%, plus he primarily studied classic ILC. Also, we have girls on this board who are grade 1 classic ILC who received neoadjuvant chemo for large tumors, and who saw a chemo response, even though in theory and according to the studies, they shouldn't have. 

I've been told by a couple of oncs that PILC acts more like a high grade IDC than like ILC, so the studies about ILC may not apply much anyhow.

And last, AC vs TC--there are no studies specific to PILC that I know of--maybe someone else can help out here. There's a big debate about the use of anthracyclines for ER/PR positive, HER2 negative tumors in general, and a lot of oncs seem to be moving towards using TC. My onc had me on AC with 5-Fu, then after I was done with that, said she'd probably have put me on TC if she had to do it over again, based on data that had come out of the San Antonion Breast Cancer Symposium in Dec 2007. 

Basically, the oncs are all grasping at straws--there is no one treatment that works all the time for all the patients. Even within subtypes, we're all different, and there's really no way to know if something is going to work until you try it.

Hope that helps a little bit--feel free to PM me any time.

Northstar

I was 65 at diagnosis this past August, 2008.   I had a bilateral mastectomy, no chemo, and just finished radiation.   Will be on 2 years of tamoxifen, then 5 or so years of Aromasin.

I haven't seen very many people on the discussion boards as old as I am.  Would love to hear of others who've had ILC and who are older.   

sandogger

I was 51 at dx, had been on B/C pills for about 30 years and have ER+ PR+ Her2- and was perimenopausal.

This has thrown me into hard-core menopause complete with night sweats, extreme hot flashes and all that goes with it.

I also read that ILC is most common in women 60+.

I feel the B/C pill is a strong possibility for the ILC.

I had to take it for endometriosis.

Wish I knew then what I know now.

sandogger

Nash,

P.S.

I am also in the SD area and am being treated at UCSD.  So far, they have provideed a pretty high level of care as far as I can tell.

nash

Sandogger--there's a group of women from these boards in the SD area who get together for lunch monthly. In fact, they're meeting today in Encinitas. If you're ever interested in meeting up with the group, there is a thread in the "Get Togethers" section of the boards called "San Diego area", and they post the lunch plans there.