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Topic: How many of you actually had a palpable lump?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Feb 2, 2008 10:31PM

nash wrote:

OK, girls, I'm just curious. How many of you had a palpable lump with your ILC? I did--I never would've noticed the thickening part of things--just suddenly noticed a hard lump one day.

So I had a lump, plus thickening (the thickening which, again, I never noticed, but the onc could feel). What was everyone else's experiences?  

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Feb 2, 2008 11:09PM Tricia wrote:

I never felt the lump, nor did my pcp, who examined me a few weeks before my annual mammogram.

That is how mine was found.  Thank goodness I was good about going every year.

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Feb 2, 2008 11:15PM karen1956 wrote:

Something showed up on my annua mammo - then it was the ultrasound that actually found 2 of the tumors and the MRI found the 3 and the lymph nodes.

Hi Tricia.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Feb 2, 2008 11:32PM Little-G wrote:

I found the lump.  I had a rash under my arm and went to scratch it, then I found that lump.  I always wondered what they felt like, when they tell you to feel for lumps, but when I felt this one, I knew what it was.  I didn't feel any "thickening"  I don't even know what that is.  I don't want to know!!


Dx 2005, ILC, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Feb 2, 2008 11:45PM BMD wrote:

Hi nash-MRI is the only thing that found mine. My bs couldn't even feel it until she was looking at the ultrasound with the needle in it for the biopsy. 2.5 cm and nobody knew it was there.

We are all in God's caring hands, BrendaBMD Dx 7/14/2006, IDC, 2cm, Stage IIA, 0/10 nodes, ER+/PR+, HER2-
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Feb 3, 2008 09:34AM nagem wrote:

Mine was like a Good 'n' Plenty under my skin beneath my breast. It was quite hard. I had just had a mammo, but it wasn't picked up because of its location. My gynecologist said it was probably just a cyst and that we should watch it for six months and see if it changed. Glad I didn't follow THAT advice!

nagem (underthestinkwoodtree.blogspot...) Dx 9/23/2005, ILC, 1cm, Stage IIA, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Feb 3, 2008 10:55AM - edited Feb 3, 2008 10:55AM by wallycat

I was very lumpy my whole life, so nothing stood out as odd to my hand.

I've posted this was a weird boob dream...3 nights in a row...that prompted me for going to my mammogram.  I'd been going regularly until I hit 49 and the debate about waiting to 50 making more sense.  I was going to be 50 in may of 07 and thought 4-5 months wouldn't make a difference.  But January came, and these dreams and I scheduled the mammo.  Nothing.  I told the tech I just had an odd feeling about my right boob, inner quadrant.  She said they'd follow up with an ultrasound.  It was a fluke that the ultrasound found a tiny shadow because the radiologist said she'd never seen anything like this.  The last year or so, my hospital was doing breast MRIs so they wanted me to go.  A different spot from the US lit up.  Back for ultrasound so they could biopsy it.  When I went back for the ultrasound, NOTHING showed up...not even the funny little (initial) spot...clean.

So back to MRI for the biopsy....yup, ILC.

My surgeon looked at the mammograms and palpated the breasts and said he felt absolutely nothing.  He would have sent me home and he swore he had NO IDEA how I found it or knew to have it looked at.  The MRI indicated .8cm tumor, but it ended up being 1.8cm.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Feb 3, 2008 11:40AM Lynn12 wrote:

I never had a lump. My breast shrunk in size, had dimples when I raised my arm and felt different than my other breast...I guess it was thickening.  Also, the nipple changed and looked different than the other breast. Mammo didn't find anything but US did.

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 3, 2008 11:44AM sahalie wrote:

I felt my lump while drying off after my shower.

It was very soft.

On a Saturday so I had the weekend to scare myself.

Everything went really fast after that.

It just was there that day. 

I had never felt it before.

It will be two years next week.

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Feb 3, 2008 12:29PM snowyday wrote:

Ifelt a lump and it took the Drs. almost two years to take it seriously, it was above the breast so you could even see it.  The worst part was fighting for the right diagnosis and at night every night I would fiddle with it and worry.  Finally my back Dr. felt it and bang within two weeks I had my biopsy and another two then surgury.  I still find it hard to believe that some Docs don't take them seriously. NUTS. Pearl49

PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Feb 4, 2008 11:35AM femtazzie wrote:

I was putting cream on one afternoon and there it was.  It took 27 pictures with the Mamo before they found it because it was on the chest wall.  I had a mamo very year so why they never found it is beyond me.

I have since switched where I get my Mamo's etc done - New place has no wait and is considerant to the patients and is VERY accurate. 

Terri Dx 8/1/2007, ILC, Stage IV, Grade 3, 24/28 nodes, mets, ER+/PR+, HER2-
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Feb 4, 2008 12:02PM LauraGTO wrote:

I had two lumps (smaller one was LCIS, larger one was ILC). When I turned 40 I had my first annual mammo. Nothing showed up for the 4 years of mammos that followed. I always had a thick dense lump/area along the chest wall that I always thought was just dense tissue. The reason I thought it was "just" dense tissue, was because it encompassed almost all of my breast since I was only an A cup size. My Gyn. never felt it or mentioned it during my annual exams, so I never questioned it, especially because I had clean mammos (very naive of me). Then, I was due for the 5th yearly mammo and during a self exam I found a pea-sized hard lump. And then I noticed the skin was pulled - kind of like a dimple. The Gyn. then felt it too, but still didn't notice the other lump. When I went for the diagnostic mammo and ultrasound, the pea sized one was found, and the hard dense lump - that I thought was just dense tissue, showed up and it turned out to be a 3.9 cm rock hard tumor. And what's really freaky... back when I was 20, I felt that hard dense area - had a different Dr. at the time and he biopsied it and said it was a b9 cyst. I really think all the years leading up to my dx, that it slowly became malignant. Or maybe it was malignant from the start and the biopsy missed it. I wish I would have known then, what I know now, because I would have been very diligent with s/e's and I would not have waited until I turned 40 to have my first mammo. And no one ever said my chances of developing bc were higher because of dense/cystic tissue. This is weird...a year b/4 my dx, I noticed that the cancerous breast became totally dormant/dead. During my period both breasts would swell and become tender, but the left one totally stopped responding. During an exam, I mentioned to my Gyn. that it just sort of "died" (I was actually kind of laughing about it to him). He said it was nothing to worry about. I trusted his opinion, but again...that was very naive/stupid of me.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 4, 2008 01:05PM lemonpie wrote:

My lump could be SEEN and FELT... Turns out it was 8.5cm large. I had a breast exam about 2 weeks prior to the lump appearing and nothing unusual was felt and it definatly could not be seen at that point, although I knew something was not right because my breast felt heavy.  I know this is the ILC board however my diagnoses was IDC...   

Dx 3/21/2009, IDC, 6cm+, Stage IV, Grade 2, 3/18 nodes, ER-/PR-, HER2-
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Feb 4, 2008 01:11PM carstell wrote:

 I felt no lump nor could my surgeon. My ilc was found on my first ever mammo. I turned 40 1/14/07. one 1.5cm tumor was seen .Also had a MRI that showed another tumor in the center of my breast  8mm. After my mastectomy the pathology actually showed 1  large tumor ( 4x3x3cm). Funny that no scans or tests could see this. And no one could feel it. Thank God I went in for my first mammo!!

CAS Dx 11/12/2007, ILC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Feb 4, 2008 01:45PM trigeek wrote:

I have been getting mammograms and ultrasounds(since I had extremely dense breast tissue) for 5 years diligently. And was getting my annual ob-gyn exam on january, and doing my mammo on july, doing self examinations in the shower once in a while thought I was covered.

I felt a thickening of the breast and in jan07 had mentioned the NP that that nipple was kind of dimpling(she examined and did not find anything suspicious) I thought that since I was doing a lot of weight lifting that was my chest muscle(I have-had- very small breasts).


Then they saw it on the mammo July07, and I was able to feel it when I went looking for it (the stupid ultrasound tech still could not find it after the radiation doctor asked for additional views) , size of a walnut ( laying down propping a towel underneath the shoulder - or stretching the other way) Mammo showed 2.1, mri showed 1.8, surgery 2.5 cm.

Bilateral MX with Recon, DD AC/Taxol Rads,Tamoxifen, oopherectomy, femara, zometa "Live Deliberately !" Surgery 9/1/2007 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/7/2007 AC + T (Taxol) Hormonal Therapy 1/4/2008 Femara (letrozole) Radiation Therapy 6/11/2008 Whole-breast: Breast
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Feb 4, 2008 02:58PM NancyLa wrote:

I did not have a lump, but my nipple started retracting ever so slightly.  While no lump was seen or felt, the radiologist was alarmed by this retraction which showed up on my annual mammogram. 

I can not stress any more deeply .......get your yearly surgeon told me having my mammogram was possibly a life saving event.  

"If God brings you to it, He will bring you through it"
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Feb 4, 2008 03:37PM Lolita wrote:

I never felt my lump.  The surgeon said she couldn't tell it was there even after she cut it out.  They caught it only because I had calcifications in an adjacent area.  However, there was no relation between the calcifications and the cancer.  It was complete coincidence that they found the cancer when checking out the calcifications.

Dx 10/25/2007, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Feb 4, 2008 03:56PM IllinoisNancy wrote:

My OB/Gyn didn't feel it, my surgeon didn't feel it and neither did I.  The mammogram showed it as about 1 cm, along with the ultra sound and the MRI and the lumpectomy proved it was 1 cm. I have been getting mammograms for 10 years and this was the first time it ever showed anything wrong. 

Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Feb 4, 2008 08:43PM NancyNY wrote:

I noticed that my breast had a fold right under the nipple.  The needle biopsy, before surgery said it was 2.3cm invasive ductile, but the biopsy at surgery said it was 2.3cm invasive lobular.  So, it was palpable,and right there on the mammography. That was in 2004.  Almost 4 years out.Smile
Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Feb 5, 2008 10:18AM IllinoisNancy wrote:

I don't know if this comment fits in this category but I've noticed a lot of Nancy's have ILC breast cancer?!?!

Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Feb 5, 2008 10:42AM - edited Feb 5, 2008 10:46AM by susaloh

In Germany there´s this saying about "not seeing the wood for all the trees" - that was sure for my lump. I had heard about lumps that you would immediately know that they didn´t belong - so when I discovered a tiny little lump, less than 4mm, very much on the edge of the breast, like a tiny pebble, I went straight to the doc. He took the lump very seriously and did a lot of ultrasound and said to come back in 6 weeks. After 6 weeks he did a fine needle biopsy which didn´t get anything malignant. Another 6 weeks later I went back and the little lump - was gone, completely gone! Still had the mammo as scheduled a month later. Everything clean. Two weeks later, I had this impression of a thickening - a large coin sized thickening. I was told, cancer doesn´t grow in two weeks, to come back in another 6 weeks. By that time, the whole inner part of my breast, you know, the gland part, had thickened, was kind of hard but of course still surrounded by the fat tissue. The gym weighed it in his hands, said, yes it was heavier than the other side, but the mammo 8 weeks earlier had been clean, and all the ultrasounds had been clean and the tiny lump had disappeared.....and cancer doesn´t grow to that size in 8 come back 3months later. When I asked for another ultrasound he gave me a talk about over-examining and cancer-scare, and that he couldn´t go on doing ultrasounds on me every six big mistake was at that point to think that he would know what he was doing - he had been so alarmed and cautious about the tiny speckle, so he just wouldn´t ignore a large lump - well, I think that has been the biggest misjudgement of my life!! While this had been in mid October, before Christmas my nipple looked somewhat retracted, but I still thought it had to be the hormones (it did turn softer depending on cycle). I finally had an appointment in January and over Christmas it had kind of doubled in size - even the fat tissue had turned hard. I think I have never seen a person as shocked as this doctor. He couldn´t believe it. By the end the whole breast was round and hard - before I finally started chemo it had to be measured with a ruler (horrifying experience) and was 9x10 cm!!!!

As to the doctor, was he to blame? From the legal point of view he had done everything right, had scheduled all the right examinations etc. From the professional point of view he had shown a total lack of instinct - just the fact that there had been so many diffenrent incidents in one breast (only one breast, not parallely) within a few months should have made him suspicious.... But when I learned that after all I had a slow growing cancer and that even at the time the little speck appeared the tumuor had already been there covering the whole breast, I decided not to follow it up. You never know what it was good for - for example, if I had been diagnosed 9 months earlier, they wouldn´t have found the tiny tumour in the other breast and I would still be sitting on that time bomb now.....


dx 01/19/2006, 10x9 cm ILC, chemo, bilat., rads, Tamoxifen 3y, Arimidex 8w, large met to ovary, spots elsewhere, ooph, Zometa plus Faslodex/Arimidex 19 months, Ascites, 6x Carboplatin/Taxol + Femara
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Feb 5, 2008 07:16PM LauraGTO wrote:

Susaloh - That is an incredible story! WOW...GEESH...HOLY CRA* OLY! Best wishes to you.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 6, 2008 01:34PM NancyLa wrote:

I guess that is because the name Nancy is so special.... We were all blessed with this ......nightmare  Yell
"If God brings you to it, He will bring you through it"
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Feb 6, 2008 01:42PM Locks08 wrote:

i felt a lump after a bike ride taking off a sports bra right in the middle. i called the ob he had me leave work and meet him in his office that day. within a couple weeks you could see it and it tripled.

Dx 6/21/2006, IDC, 2cm, Grade 3, 0/13 nodes, ER-, HER2+
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Feb 6, 2008 03:38PM - edited Feb 6, 2008 03:41PM by SilverOcean

I found a lump, don't even know how, just playing with my boobs! lol! and made an apt. next morning, have had two ultrasound's, and I just had a biopsy today, they actually took it all out, (I think) I will know if it is malignant in a week, Ive been waiting since I found it in Oct. so now only one week to go! It was hard and I new right away it shouldn't be there.  I'm 28, and worry about people my age now; because if it hadn't been palpable, how would I ever have known? I use to think, you would feel a lump if you had bc

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Feb 6, 2008 07:48PM seitela1 wrote:

Hard to believe anyone.  I had a mamo at 40 - found calicification mass  and ADH and had excision to remove.  After surgery I found a lump which the surgeon said was a hemotoma from the surgery.  Well the lump never went away.  I am back at the surgeon a year and 1/2 later after an ultrasound found a non-palable mass with atypia and the lump she says is not a hemotoma but a 5cm lump. All along i thought the hemotoma just was not suppose to go away.  Why did she not do a mamo after my first sugery?  It just gets very confusing and frustrating. I going back for my another surgical biopsy...wish me luck

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Feb 6, 2008 09:17PM Little-G wrote:

Seitela......Best of luck!!!!  Keep us updated and hopefully you fall in the percentage of B9 lumps!!!


Dx 2005, ILC, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Feb 7, 2008 09:58AM figsgirls wrote:

My husband found mine during sex. It didn't feel like a lump to us either - he described it as a "focal density" and I just thought it felt different than the rest of my breast. My gyno. felt it and seemed to know exactly what it was because he moved quickly in sending me for an ultrasound in addition to my mammo, which was due anyway. The mammo, like the 3 previous yearly ones, was clear, but the ultrasound showed the lump. Measured 1.3cm, MRI measured 2cm. Actual lump including LCIS was 4.3cm.

After my husband pointed out the lump and I thought he was over-reacting, I looked up the symptoms of BC online. One sign is a more pronounced vein on the affected breast so I went and looked in the mirror and sure enough there was a much more pronounced vein I had not noticed before. My heart kind of sank - I guess that's when I knew.

Laura, I agree with what you said. I had dense breasts but was never told that I needed to be much more careful with self-exams because BC might not show up on a mammo if you  have dense breasts. My sister also has dense breasts and with my diagnosis they now watch her like a hawk.

Diag. 4/11/07 ILC 4.3cm 1/14 nodes ER+/PR+ Her2-. Lump., bilat.mast. 4AC 12 Taxol, Tamox. Implant recon.
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Feb 7, 2008 08:05PM - edited Jul 6, 2010 08:55PM by Maire67


Dx 6/2005, ILC, Right, 5cm, Stage IIIB, metastasized to bone, 1/9 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Lymph node removal; Mastectomy Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Feb 7, 2008 09:46PM minuet wrote:

Hi Ladies;

I was coming out of the shower one morning and my left arm was raised to dry my hair and noticed in the mirror a dimple I never had before.

When I lowered my arm it disappeared. When I raised my arm again it was there. So I reached to touch it and there was a lump that was squishy and somewhat mobile and was smooth and round for about 1/2; the other half was irregular. I waited for my period and it didn't disappear after. I saw my doctor shortly after

she thought perhaps a cyst because it was somewhat mobile and the shape. Although she was concerned it wasn't all smooth and round.

Had mammogram and US both said highly suspicous of a "neoplasm".

Off to the surgeon who told he thought it was  likely to be cancer. He did a FNA biopsy which showed fibroadenoma! He said it still had to come out. Week later I had it out. He showed it to me and said it didn't look like cancer but a lipoma. We were all surprised when it came back from pathology ILC, multifocal with LCIS and oh there was a fibroadenoma in there too!

I've read though that ILC is often a false negative with a FNA.

When I had my mammogram this year , I was concerned that another ILC wouldn't show up.They than showed me my diagnostic mammogram and said tumour was very obvious. And yes even to me  a lay person I could pick it out. But my breast tissue was not very dense so there wasn't much white, so this white spot showed up clearly.

I was surprised to learn that my breast weren't dense as I was only 40 when diagnosed. The remaining breast is even less dense than 2 years ago. Thanks to an ooph, and aromasin I guess.

I find it so odd that some ILC's are not papable nor show up on mammagram and others do.

Oh and 10 months prior to finding this lump I had noticed a "lumpy area"

where I eventually found the cancer. I even mentioned to it my gp and  she said it was fibrocystic change. I wish I would have pushed for a mammogram!!


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Feb 8, 2008 08:48PM sunrizes2 wrote:

I had a 'thickening' on the top  of my left breast that kept getting larger.  Went to have it checked and doc said it was nothing.  Had mamo and was told same ole thing 'breasts are too dense' and its nothing.  This went on for about seven months until I said 'either guarantee me it is Nothing or biopsy it because my gut tells me it is something'  Got the biopsy and it turned out to be ILC and had a bilat mast within 2 weeks.  That was 14 years ago.  In Nov 2007 I was diagnosed with Stage IV met to the abdomem.  Am undergoing a clinical trial for Stage IV ILC presently.  That is why the Lord gave us ladies intuition. 


lil ole me Dx 11/7/2007, ILC, 3cm, Stage IV, 0/25 nodes, mets, ER+, HER2-

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