Age at diagnosis

beegirl

I was 62 at dx, ER+90, PR+50. I was post menopausal and took HRT briefly but stopped due to uterine fibroids, and then was on just PR for several years.

dawnjs5k

I was 37 at diagnosis.  I am premenopause.  I was diagnosed Stage I and ER/PR 3+.  It was 1 year ago today that I had my first lumpectomy.  It seems like it has been an extremely long year.

Dawn

VBG

I was 46 and my dx was mixed IDC and ILC, premenopausal - did rads and Tamox.  18 months later dx with recurrence of ILC ( found vis MRI, not visible on mammo or ultrasound).

Last week has bi lat w/recon and oopherectomy.  I will start AIs in a couple of weeks.  I am a high metabolizer of Tamox so not sure why this did not work for me.  I have been told that low grade cancer does not always respond well to rads or chemo.

I am hoping this is the last I will see of ILC, it is such an insidious and sneaky type of cancer.  I am thankful I asked for the MRI or it would have been years before my second tumor may have been visible, (found it a 6mm) on ultasound/mammo.

Now I wait for oncotyping and tiippiing scores to determine if there are any other systemic treatments I need beyond AIs.

I look forward to seeing my finished "foobs"!

Valerie

Anonymous

My mom was diagnosed with ILC at nearly 58; post menopausal, had taken HRT for several years. She has done very well--lumpectomy, radiation, tamoxifen--is now a survivor of over 21 years without a recurrence. (has had colon cancer twice in the last 6 years, but is still doing well )

Anne 

beastybabe

I have been reading this convo this morning and have questions if you can help...

1.  What is an ooph?

2.  Is Lobular breast cancer different to invasive ductal carcinoma?

As I was 38 when I was diagnosed and have now been told by my doctors what the percentage rate of my hormones were, should I ask???

beastybabe

sorry gals, that should have read that I have not been told by by doctors about the percentage rates of the hormone levels

nash

Beasty, an ooph is an oophrectomy, or removal of the ovaries.

Yes, ILC is different than IDC. ILC orginates in the lobules of the breasts, vs. the ducts (IDC). It tends to be be hormonal positive, HER2 negative, and grade 1 or 2. ILC also tends to have a different pattern of metastises--it will spread to the reproductive organs and abdominal cavity more often than IDC.

Since you are stage IV, it would be more helpful to see how well HT works for you based on scans and tumor markers than on what your ER/PR percentages were. Either the HT is going to work for you or it isn't at this point, and one advantage of being Stage IV is that you're closely monited to see how well whatever treatment you are on is working. I'd assume you're on chemo right now, b/c it looks like you were diagnosed at Stage IV? Where are your mets?

Jani_

Hi fellow ILC-ladies,

I had just turned 31 at diagnoses. ER+, PR+, HER2-. Pre-menopausal.

I never took hormones, never took oral contraception. But I did start my period very early, aged 11. Onc says that was probably my trigger.

Janine

geebung

That's interesting Janine, I was also 11 when I got my first period. I had breasts at 10! I think I was robbed of my childhood! I tried to counteract the early puberty effect by breastfeeding for an extended period with each of my babies and I thought that would stop me from getting bc...but I still got DCIS and had a mastectomy last year.

gb 

Jani_

Hi geebung,

When my onc told me about that, I found it very interesting too! I read that girls should be extremely active from a young age to postpone the onset of menarche (first period). But I was extremely active, and yet...

Janine

nosurrender

Hi I was 44 when I got my ILC dx.

I had my first period at 12.

I never had children, never was pregnant.

I had tripleneg cancer at age 39. So I was not taking any hormonal therapy. 

VBG

Hi Ladies,

Nash do you have specific details on ILC mets in the abdomen/reproductive organs?  I spoke with my Doc about that risk but she did not believe there was a connection.  She indicated that long term tamox can cause uterine issues but ILC was not a risk factor.  Can you elaborate?

Valerie

Little-G

As far as the early period thing goes...hhhmmm..I don't know about that.  I had my period when I was 14, I was a skinny kid and am a skinny adult.  I go back to my original thinking, if they knew what caused it, shouldn't we have a cure by now??

g

nash

Valerie, below is an excellent professional article regarding the spread of ILC and how it manifests itself on scans. I think it's worth printing out and giving to your onc.

"Metastatic Lobular Cancer of the Breast: Patterns of Spread in the Chest, Abdomen, and Pelvis on CT"

 http://www.ajronline.org/cgi/reprint/175/3/795

Pharmmom

I don't have lobular but I got dianosed at 38.  I got my period at 16!  So there goes the early hypothesis.  I hate when oncs say things like that because they really don't know.  Blessings to you all.

waterlily

I had a lump in my breast for several years.  When I was 40 I had a  biopsy and lumpectomy and it was LCIS (many years later when I requested the pathology report I found out that the margins were not clear).  After that I was seen by the surgeon every six months and each time I told him I felt like there was something under my scar.  He said it was just scar tissue.  At 45 I insisted on a biopsy.  It came up ILC and I had a mastectomy.  The 2 cm tumor was strongly ER+ (90%) and PR-.  My pathology report said pleomorphic ILC, as well as DCIS and IDC.  All of my mets have been lobular though.

Wow nash, what a great article! I printed it out and am going to share it with my onc.

Lynn12

I was 45, premenopausal when diagnosed with stage IIB ILC.  My path report said ER+/PR+ but did not give percentages.

Little-G

Have any of you had a re-occurance in the other breast, ILC or otherwise? 

g

SuzieM

I was 47 when diagnosed and peri-menopausal. In fact, I had gone to my GYN because of heavy, erratic periods. He did some tests to rule out endometrial cancer and scheduled a "routine" mammogram. Nothing routine about the result: ILC, strongly ER+, weakly PR+, as best I recall. (It was in Aug 2005.)



One thing to note is that lobular has usually been around longer than ductal cancer when it is found because of it's "sneaky" characteristics--not forming distinct lumps. That means that most of us have had this cancer for quite some time before we are diagnosed, longer than is typical for someone with IDC. That's why so many of us have really large tumors. Mine was around 5 cm.



I will always wonder if they would have found the cancer had I had a mammo a year earlier. I had been trying to schedule them annually since I had very lumpy breasts and had already had one biopsy (negative) in my 30s. But life kept getting in the way and it was 2 years between mammos that time. (Yes, I am now on a strict annual schedule!)

SuzieM

Let me add to the early period issue. I was 10 (ouch!) when I got my first period. I was also extremely active, not overweight. Who knows why so early? Although not all women with ILC or other types of breast cancer have early periods, it is one of the known risk factors, as is hormone replacement therapy. Both of these have the effect of increasing the length of exposure to estrogen. In my case, I also had my only child when I was 30, which means I had 20 years of uninterrupted exposure to estrogen.



In a sense, they do know how to prevent cancer that arises in response to estrogen exposure: shut off the estrogen. That's why we take AI drugs or have our ovaries removed or shut down, etc. The more extreme measure is to have breasts and ovaries removed before breast cancer is found, but of course few want to do that unless the risk is very high, i.e., when you have a genetic predisposition.



If you know someone who started getting periods at a young age, encourage her to have regular mammograms even if she is "too young" to need them. Or at least to make sure her doc is aware of her risk and takes it seriously.

Gitane

Just thought I'd share here what my onc said when I asked about having ovaries/uterus taken out. He said that there was no point in doing that because it would spread in so many places if my treatment failed, that just eliminating those would make absolutely no difference. Does this sound like what your were told, too?

IllinoisNancy

Hi, I'm a ILC girl too.  I was dx one month before I turned 50 and was premenopausal. I had my first period at 13 and I had my first child at 26.  I nursed both of my children for a full year.  I have never been overweight.  I think I got ILC because I was on birth control pills for 19 years right up until the day I ws diagnosed.  I also think I ate too much red meat and drank a couple too many beers.  My ER was as high as it could be and my PR was zero.  I had the oncotypedx test done and I got a 9 so I had a lumpectomy, rads and now tomoxifen.  I wish you all the best and hope none of us get it back. Take care, Nancy

Gitane

Wow, IllinoisNancy, we are so similar. I had my first period at 13, my first child at 24, nursed her for a full year. I have never been overweight. I think I got ILC because I was on HRT for 2 years, right up to my diagnosis, yes to red meat, and wine instead of beer. ER+ PgR nothing. The current studies about HRT from France seem to be finding ER+PgR- is related to the HRT. Oh, well. Wish you the best, too.

SuzieM

Gitane--From what my onco has told me, she recommends women have their ovaries removed if they have one of the genes that put you at high risk since they are associated with ovarian cancer as well as breast cancer. But I've never heard of trying to prevent the **spread** of breast cancer by removing ovaries.

bbmom

I was 43 at dx. ER+ 97, PR+ 5. I was pre-menopausal until my taxol tx. It's been 2 1/2 years.

pepperpot

Hi Nash,yes it was pleomorphic,was great to see the thread on pleomorphic as hadnt seen it anywhere but on this site,hope you are all well ,love Pepperpotx

Ka-Loni

Hi Janine, It's Kaloni. I have been trying to see if you have a recent thread going, so I can post my sweet thoughts there. Other than that, I did leave you a PM. I had my Hysterectomy May 1. And, I am just resting and being lazy. And, the Percocets are Great! Take Care sweetie. Bye.

God Bless,

Love,

Kaloni

GrammyNancy

I was dx at age 57 ER 90%, PR 60% and HER2+. Finished chemo last June, Herceptin until end of July this year and started Arimidex last July and will be on it for 5 years.  Never took HRT's but was on birth control pills for a couple of years.

Nancy 

Little-G

Well, I had my yearly MRI today.  I think it was the longest MRI in history!  I was literally in the machine for an hour and 20 min!!  My head had a red mark on it from being on that pillow for so long!  I think it'll be OK though.  I don't feel very worried this time, which is a good thing.  Because what does that accomplish anyway.  What was weird is that I got lost going there today!  I've been to that hospital more than I can count and I took two wrong exists and was 1/2 hour late!  Oh well..it's done.

g

susaloh

I was 45 and pre-menopausal.

ER+  was score 9 out of 12 = 60% strongly positive cells

PR+ was score 9 out of 12 = 60% strongly positive cells

In my first biopsy ER+ was score 10,  PR+ was score 12  (very strong)

I was told the cancer must have been there for at least 10 years - so it must have started when I was 35? Imagine if it had been found, very small, at that age.