Did your ILC sneak up on you?

Ked1019

I don't want to step on toes but I need to know because I am so scared. I have recently had 2 biopsies that have come back with Flat epithelial atypia (sometimes known as columnar cell change with atypia or atypical ductal hyperplasia) and multi focal atypical lobular hyperplasia involving fibroadenomas (2) and adjacent breast tissue. I started out with microcalcifications and bloody discharge. I turned down the ductal excision due to fear and the fact that only a dialated duct was seen on MRI/Mam and u/s. No masses noted in that area. My doctor told me that FEA can share the morph(?) of tubular cancer and ILC but can also morph into DCIS but doesn't share the same architecture. My biggest concern is the ALH which was found throughout the 10-12 area of my breast. She said that I am at high risk becuase ALH (which she said is boarderline LCIS but they are treated the same way) can be found before lobular cancer and how tricky lobular cancer grows and goes unseen on mam/u/s and mri. She said it rarely forms a mass. She called it a finger cancer that branches out. (?).

 My question is how do you know and what do you look for. I feel blind because if they cannot see it when I go for my 4 month f/u MRI/MAM and u/s and I can't feel it how will I know if something is going wrong in there. The nurse practioner told me I have these cells that just haven't baked yet. She further went on to tell me I may never get cancer  but may have abnormal biopsy after biopsy for years to come until my breast matture and calm down.

Have any of you started this journey with abnormal biopsies, ALH/LCIS and then have ILC sneak up on you? 

Hugs to all of you as you are all so wonderful, strong and encouraging. 

nash

My ILC presented as a lump, and was also visable on mammo, although the radiologist missed it. There is a thread here I started called "How many of you had a palpable lump?", and there's a lot of discussion on there about how everyone's ILC felt to them. I could never feel the thickening part of the ILC, although my onc could. I never had any problems with my breasts that lead to biopsies prior to discovering the lump.

ILC shows up very well on MRI, so in your case, if your MRI's are negative, I think you can be pretty comfortable that you don't have bc. If anything, MRI gives a lot of false positives.

I understand your fear. It sounds like you're getting very good followup care, though.

Gitane

I will tell you what I know, but I'm only a patient.  You need to talk to doctors, and keep asking your questions.  I was told by my oncologist that ALH and/or LCIS is not seen by MRI or other imaging modalities.  You are indeed fortunate that yours was found. Do not risk getting invasive cancer.  Find out now what you can do to prevent it.

As far as finding ILC goes, usually only MRI will catch it at an early invasive stage.  If you read Nash's thread about a palpable lump you will find that most of our ILCs were not diagnosed at an early stage, not seen on mammograms (digital or not), felt by us or our gyn during exams, or even seen on ultra-sound.  

You really are doing the right thing in being proactive about this.

spar2

I didn't have a so called lump but a thickening of the skin, you could feel it, it was not round but uneven around the edges.

LizM

Yes mine snuck up on me.  I was diagnosed with ALH a year earlier after microcalcifications showed up on mammogram.  I had a thickening but two breast surgeons, a clinical breast nurse, and two gyn doctors all told me the thickened area was fibrosystic dense breast tissue.  I was getting clinical breast exams every 6 months due to the ALH and turned down Tamoxifen.   My breast surgeon did agree to me getting a mammogram and ultrasound when it was time for my yearly mammogram.  The mammo was clear again but the ultrasound showed the mass.  The radiologist probably would not have found the mass if it weren't for me running my mouth about the thickened area that everyone said was nothing.  It took her quite a while to find it.  An MRI was never recommended since that was 3 years ago and they were not recommending them as often for high risk as they are now.  Don't know if the MRI would have found it.  I ended up with a 2.1 cm tumor consisting of both ILC and IDC and DCIS and LCIS and ALH.  I also had one positive node.  I was very upset because I thought I was being very diligent after my diagnosis of ALH and that if/when they found the cancer it would be very early, NOT.  All I can say is stay on top of it and if you have a thickened area make sure they check it out.  I never had a lump. 

Ked1019

I knew it, I just knew it... ILC is sneaky. Okay call me dumb but what do you all mean by "thickening". What does that feel like?

karen1956

My BC Dx was a total shock out of no where.  I had my monthly gyn monthly check up the previous month and nothing unusual.  I went for annual mammos and never was called back.  So in 2006 when I went for my mammo and go called back it ws quite fearful of the unknown.  I then went for a spot compression mammo and ultrasound.  From the ultrasound to biopsy (told BC) to MRI to more biopsy (more cancer).  Atleast 3 different tumors in breast - ILC plus invasion into the lymph,   I interviewed two surgeons and they both recommended bilat (that was what DH and I were leaning towards).  Good think too, as the pathology from "good" side was ALH.  For me the bilat eliminated one worry for me.

If you are unsure, go for a 2nd opinion.  You need to have some peace with the decision you make.  Hugs to you.

LizM

I also opted for a bi-lateral mastectomy after diagnosis of bc in one breast.  After my surgery my good breast also showed ALH and probably would have cooked up the same thing down the road.  I chose to remove them both because it was so darn hard to find the breast cancer the first time.  I had very dense breasts and did not trust imaging.  It is funny because I still do not know if the thickened area was the breast cancer or if the breast cancer was hiding under the fibrocystic dense breast tissue.  I had the thickened area for two years and had mammos and ultrasounds which showed nothing as well as breast surgeons who said it was fibrocystic dense breast tissue.  My thickened area was also in the upper outer quadrant and was a much larger area than the size of my tumor.  My tumor was deep (just 2 mm from the chest wall) so who knows what the thickened area was.  All I can say is know your breasts well and check out anything that seems unusual.  Because you have atypical cells you are at an increased risk.  If I could do it over again I probably would have taken Tamoxifen when diagnosied with ALH and definately would have regular MRI's and ultrasounds in addition to mammograms.     

snicklefritz

Wow.  This thread has really hit a cord with me because yes, the ILC sure did sneak up on me.  i went for a routine mammogram and I just did not see it coming.  No lumps, no thickening, no nothing.  Felt like the lamb being led to the slaughter.  This big ol' tumor shows up out of the blue and I can see it on the screen with the doctor looking on, plain as day.  I'm 44 with no history, no warning, no cause at all to worry and BOOM!  Truthfully, I can honestly say I was incredibly lucky the mammogram even saw it.  It was pleomorphic, aggressive and nasty. 

 For those of you still going thru treatment, there is light at the end of the this dark tunnel.  It took me a long time to find this light but it is there.  It will be five years for me very soon.  I am so grateful for each day, truly.

 Love to you all,

Mary Jane

wallycat

Mine did sneak up on me.  I had a "rope-like" feeling ...but I had it on both sides of the breast...almost perfect mirror images.  I had been going for mammos since I was 40...an occasional ultrasound.

Then I had these weird dreams and this gut feel it was on my right side, inner quadrant.  It did NOT feel different than it ever did; it did NOT feel different from the other breast.  If I had had to guess which boob was going to get cancer, I'd have picked the left one.  It was always bigger, had become a bit less sensitive in the nipple, and had a huge lump in the lower quadrant when I was pregnant (which disappeared when I miscarried).  I went for my mammogram and was told it was perfectly normal and fine, but I insisted.....I've posted my story before.  The ultrasound happened to show (and was unable to reproduce this same finding) a tiny, tiny shadow to small to biopsy.  I was lucky my hospital was doing breast MRIs.  THAT Showed my cancer.  I had been scheduled for a biopsy via ultrasound but nothing could be found even when they knew what they were looking for...so back to the MRI for the biopsy....

I opted for bilateral mastectomy and my left breast was fine.  I did not have multifocal cancer, just the area I had the gut feel about.  I still think this whole trip was a crazy ride.

paige-allyson

I had been concerned about an area of my breast since 1999. I had needle boipsies in 1999 and in 2004, both negative, and also negative mammograms at those times. My bc was dx by a routine mammogram in May 2007 and looked much smaller than it actually was. With stage IIIA breast cancer and 6 positive nodes my surgeon and oncologist both said the bc had been growing for years since it is not a fast growing cancer. I wish I had pushed more and had know more, maybe I would have gotten an excisional biopsy or and MRI. Oh well- I don't really go to the coulda, woulda, shoulda, place anymore, it is what it is.

ck55

Yes ILC is very sneaky! I had been having mammograms since my early 30's since my mother had bc. I was sure that if it ever happened to me I would catch it early. HA! At 51 I had a mammogram that showed a small organized area of microcalcifications, so of course a biopsy was scheduled. I somehow new it would be cancer, but I was sure I had caught it very early - DCIS. The area that had lit up was indeed DCIS, but ILC was also found. The biggest shock was that it was 9 cm!, and in 2 nodes!!! It was never felt in a breast exam, even after we knew it was there the breast surgeon was unable to feel it.

Lets just say I don't have a whole lot of confidence in mammograms anymore. Although it was the DCIS on the mammo that led to my diagnosis (and oddly enough that was the only DCIS found in the entire breast). I now rely on MRI's for my remaining breast.

I am with you Sherri - Cancer Sucks!!

L

donspink

Hi there your comments are interesting, my specialist says my IPLC grade 3+ has Indian file, have you heard of this.  I actually have 2 Indian Files, incase you don't know of this, it is called this because of the way it goes, and grows, in a line (as in Indian File)  Bloody Indians (sorry but I am not really racial) who needs them especially in your body.  Get out I say, you have no right to be there BYE!

Ked1019

Thank you all for sharing your story with me. I count the months until I can get another look at these babies and make sure nothing is going on in them. October cannot come quick enough.

 Thinking of all of you... Thanks again.

KED 

JaxsonHarley

Hi,

  Mine certainly snuck up on me. I was diagnosed with DCIS stage 0 ,in the left breast ,in 2002. I had a lumpectomy and radiation. In 2006, a shadowy area started showing on my mammo's, again in the left breast, but Dr. assured me it was probably scar tissue from surgery and nothing to worry about. After 2 more mammo's 6 months apart, one of the technicians suggested having an ultrasound. They said I should go have an MRI. Had an MRI, which didn't reveal anything.But they said because of my previous diagnosis, they would recommend a biopsy. The Dr. who did my radiation treatments said if I wanted, I could just repeat a mammo in a couple of months. I insisted on the biopsy. Well, the pathology came back with ALH & LCIS. I decided that to prevent another diagnosis, I would just have a bi-lateral mastectomy.Well, the pathology came back showing ILC, spread over an 8 cm area in that left breast. This did not show on any mammo's or the MRI! The surgeon told me she was just blown away with that report.She literally thought she had the wrong report in front of her, and had to double check it! She told me how I had probably just saved  my life having that mastectomy.There was no node involvement. I had 4 rounds of chemo, Taxol & Cytoxin.Then a year of Herceptin. I am now done with that and am on Femara.It's been 16 months since that happened. I also had my ovaries removed. You have to be so pro-active when it comes to this disease. I remember years ago, when mastecomy's were automatic with breast cancer. Now a  lot of woman are going back to that way of thinking. I wish I had done it  when I was first diagnosed. Prayers to all of you, Jackie 

Donna51

Yes, I would say my ILC did sneak up on me. Although I never had a biopsy because my mamograms have always been negative, I had a mamogram on April 25th of 07, that was negative. On June 4th, 07, I found a lump in my left breast after loosing some weight and having a burning sensation in my left armpit and some pain to my left breast. I was rubbing my left breast due to some pain I was experiencing in it and found the lump. I went a month later for a diagnostic mamogram which only showed the mass in 1 of 4 views. I had a biopsy 5 days later in which they aspirated some cells from a swollen lymph node in my armpit (which I could not feel). The cells they aspirated from the lymph node were positive for breast cancer cells. So I found out immediately I had breast cancer. I underwent a complete left mastectomy and removal of the lymph nodes on July 23rd, 07. I then found out I had stage 3 ILC because of the size of my tumor 3.9cm and 4 +lymph node involvement.  I am told the mamogram in April did not show the cancer because it was lobular and also because I had dense breast tissue. All of this I never knew before, if you have dense breast tissue you can have a mass, and it may not be detected because of the dense breast tissue. I was also told by someone that because my mass was painful it was probably a fibroid, which is obviously not true either.  So it is good that you are vigilant with you mamograms and MRI's. I hope you never develop cancer but I think you are smart for researching it so thoroughly.

Genia

Not only did it sneak up on me......the surgeon told me had I gone when I first felt the thickening.....it would NOT have been caught.  My mammogram didn't show it.  My ultrasound showed SOMETHING.....but the radiologists said if it was cancer it wasn't the typical kind he was used to seeing.  So HE recommended I have an MRI.  Thank God for him.....because if he hadn't wanted the MRI....I would have gone home thinking everything was ok.

My tumor is 7 cm......

Ked1019

Genia, what did the thickening feel like? I found a lump after my last cycle when I did my monthly exam. I am on day 21 if my this cycle and my gals are getting a little fuller as they do toward this time of the cycle. I can still feel the lump and it hasn't gotten bigger. Can a doctor feel thickening when they do the exam in the office. Just wondering. Sorry so many questions. I know you are in a whirlwind right now. You are in the right spot because these women are incredible and so caring and giving of their time. 

 Donna, thank you for your story.  

 Karen

Monique

Glad to see this thread.  I have been really angry about this since I was diagnosed on May 29th.  I am 50 years old and have been having mammograms every year since 40.  I had one in October 2007 and on May 15th 2008 I was showering and felt a lump.  Another mamo, ultrasound, MRI, two biopsies, uni mast on July 7th.  The tumor was 3.5 cm! How could that not have been seen in the Mamo in October?  I was told that ILC is hard to see on mamo's and that I also have very dense breast tissue.  As I said before I am 50 - I have never been told that before by anyone - why not?  I am angry that the medical community does not share the information that if you have dense breasts you might need to be more vigilant about checking things out.  Personally I would even have paid for the MRI myself every year, had I known what I know now.  Of course that is not the answer either because people who can not afford these tests should not be denied them if they are warranted.  I wish there was something we could do about this so that women can get better preventative testing in the future.  Any ideas?

Genia

Karen....the thickening just felt like a hardened mass.  It is in my right breast on the outer part near my underarm.  I found it 4 months ago.  But because I've always had "lumpy" breasts due to "hundreds" of fluid filled cysts.....according to my Dr.....I really never gave it another thought.  I just watched it to see if there were any changes in it.  With ever period I had....it seemed to protrude more....but then would go back down after my period was over.  I was due for my yearly mammogram which I have been FAITHFUL to have in May.  I waited until June to go.....hey what's one month....lol. 

Had I gone......when I first found it......they wouldn't have detected anything at all!  God takes care of the foolish.......and the slow!!!  lol  In this case being a procrastinator might have saved my life........not saying it's the smartest thing to do!

Gitane

Monique, Great question!  Women should know that MRI is available to them, even if they have to pay for it themselves.

wayover20

VERY SNEAKY indeed! I had already had a lumpectomy and radiation on my left breast for very small dcis, in 2004. Well in Dec. 2006 while lying face down going to sleep, I felt a firmness to my right breast, towards the back of the chest. For a couple of days I tried to put it off since I couldn't actually "feel" any lump with my hands, but the discomfort persisted always when lying face down in bed (stomach sleeper). Long story short, mammo didn't see it but sono did....4.3cm mass, flat. ILC. Now one boob less and not looking back.

Pat

nash

RE: MRI's. I was appalled when I saw my onc for follow-up last month. When I was first diagnosed last year, at age 38, she told me that I'd be having annual MRI's along with the mammos. Now she's saying that we may have to push the MRI's to every two years, b/c the insurance companies are starting to balk at paying for annual MRI's unless one is BRCA positive. I think that is ridiculous, and will pay out of pocket if I have to.

And it's not only ILC that's missed on mammo. My late stage IV bc mom had a 4.3 cm IDC that was missed for years on mammo and clinical exam. By the time they found it, it had spread to her chest wall and her nodes were matted together. And she was 62, so her breasts were not dense. She lived for 5 1/2 years after diagnosis, and was on active treatment almost the whole time. 

The part that really sucks is that  when the docs went back to review my mom's old mammos, they could see the IDC tumor once they knew where it was. Same with my situation--my ILC showed on the first screening mammo I had at 37, which they proclaimed as "fine". I found the lump 10 months later (never could tell which part was the thickening, but the surgeon could). Again, when they went back to look at my first mammo, they could see the tumor. It makes one want to scream.

KC1

 I've had breast issues since I was 22.  (first mammo)  I'm now 45 and almost a 2 year survivor.

Mine also appeared as a thickening; in the right breast, twelve o' clock position.  I didn't panic too much because of my previous experience with fiber cystic disease.  I knew my annual exam was approaching and if it was anything the Dr. would say something (he didn't).  I had my mammo and it didn't show up, so I went on with life.  One year later,it's still there (it didn't appear to be getting any larger) and the Dr. still says nothing.  I went on to have my mammo soon afterwards and sure enough this time I was called back for add'l views. Another mammo and an ultrasound later that same day, the radiologist said to me, this has to come out!  (This was Fri.)  A biopsy was scheduled the following Monday.  By Wed. it was confirmed as breast cancer.  It was ILC.  The following Friday I had a lumpectomy.  It was  1.5 cm in size. ER/PR+ . Thankfully, by the grace of God it had not spread and no nodes were positive for cancer.  I had 4 rounds of chemo followed by 33.5 radiation treatments for 6 weeks. 

"God takes care of the foolish.......and the slow!!"

Isn't that the truth?!

rayhope

I went to gyno for inverted nipped in Dec. 2007.  During the last year had two mammograms, two ultrasounds and one mri.  NONE of them indicated cancer.  In October I noticed a palpable mass and went back to surgeon; he removed it at that time and path report showed DCIS.  After bilateral mastectomy on Nov. 24, diagnosis changed completely to ILC, stage IIa.  Yes, I guess I would say it was very sneaky. 

1Cathi

I was DX @ 46 With ILC,  I actually did feel a "lump" in the upper outer quadrant of left breast close to the underarm, it was just there one day while showering, I had been bad and missed my previous year mamo, but 2 years prior was given a clean result.  The lump that I was feeling I would have to describe as not rounded but pointy, like a large pencil point.  I went to my GP who ordered a mamo and US ASAP. The mamo showed nothing, the US picked up a solid mass where the lump was felt. Immediate excisional biopsy,   folowed by lumpectomy,  I was also lucky no nodes positive, 33 rads treatments and tried Tamox for awhile.  My margins were clean from ILC however very close margin of ILCS and ALH remained.

I think that I am very lucky in that mine did present as a lump,  my GP was wise enough to order the US - otherwise it would have been passed up on mamo,  I was DX in 06 but I bet it was there in 04 with that clean mamo.

I have since had a bilat for atypical finding in the good side. So hoping BC is behind me now.  Crossing fingers and toes.

melmedic06

actually no- having already had 2 benign lumps removed 5 years apart i was not the least bit suprised when something showed up on my mammo in october of 04- i hoped it would be benign but figured i was running out of luck- ultra sound picked it up right away and as soon as the tech and the radiologist saw it i could tell by the look on their faces it was cancer- i was lucky as it was a small tumor- 0.9cms with a negative SNB so i had a lumpectomy and 6 weeks of radiation and started on arimidex- however in october of 05 they found DCIS in my other breast and i had another lumpectomy only this time the breast tissue sent to pathology was totally cancer free- the surgeon says this happens alot- i had 6 more weeks of radiation and continue on the arimidex- i dread every mammo and every set of labs but so far so good- keep the faith ladies-

CCBoise

Sept 23rd I capriciously walked into the Y to exercise, having had a total right hip replacement the end of April this year and have been rehabing it. Picture of health. The mammogram coach was parked out back out of sight.  Food desires brought me to the table where the ladies invited me to run out to the coach and have a mammogram..The palpating nurse told me she felt a cyst in my breast at 12:00, the nurse x-ray tech, said she is a survivor.  2 weeks later I got a call and the request to do an ultrasound, multiple view mamo, then it seems like every two weeks I was either having an ultrasound guided biopsy & mamo or ultimately a meeting with the woman I chose as my surgeon who ordered an MRI.  Even she couldn't palpate the primary tumor & we discovered in the MRI there were at least one other possible 3, plus the chains looked like spider webs and a starlit night.  As a retired massage therapist, I''ve had ladies on my table who have had the old radicals, yikes; lumpectomies and total mastectomies... I just couldn't believe I could be in the group.  After looking at the MRI, my decision for a mastectomy of my left breast was simple and clear.  When I awoke, I discovered the simple mastectomy had turned into a modified radical and I was left with a rather painful L underarm. One sentinal node was positive, there were 2 sites-one 1.7X1cm, on 7mm. Drains were aweful, they hurt, especially the lymph drain.  I am scared. I want to be the single breasted warrior survivor who finds alternative ways of treating this piece of crap disease.   But I'm not finding successful treatment/no reoccurance stories anywhere- at least not for more than 10 years. My onco recommends Taxoten & Cytoxan- 4 cycles-  which I'm seeing many have done.  Then Tamoxifin as I'm pre-menopausal, just barely.  I could not find the lumps right up to the day I had surgery... now I keep checking my other breast, to see if my nipple is tipping, if there's any thickening...My breasts are so fibrous.  This is the first time I'm admitting how scared I am. I am brave on the outside to others. I don't know what to do next.

Seabee

Keep reading on this site and you'll find plenty of survival storiesl I don't worry about survival becasue my mother had breast cancer in 1947, when she was 45. She never had a recurrence and died at the age of 82 of a stroke.There's no guarantee I'll be so lucky, even though BC treatment now is much more advanced than it was in 1947, but I'm not going to fret about it.

saint

Hugs CC--cancer is a sneaky beast! I was the only one who could feel my lump. It was small & deep. Dh could not feel it, GP could not feel it, surgeon could not feel it! But when I looked at my mammos I could see it!

It is NORMAL to be scared, angry, confused! It is still new for you & not easy to wrap your brain around! Basically you are still in the spin cycle!  Be easy on yourself. Take your time & ask questions here & at your doc app't. There are 1000's of us walking this road just ahead of you. We'll hold out our candles & light the way...you can do whatever you have to to survive & reclaim your life at the other end of that dark tunnel! No one wants to do chemo, but it IS do-able & when you are done it will just be a faint, bad memory! Give yourself the best possible prognosis. Don't let fear of chemo overshadow what you really need to fear--cancer!

Hugs--PM me anytime--we are all here to help & support each other.I don't know where I'd be without this site! Keep coming here. Be well & stay strong 

Mykidsmom

HI there - I had LCIS and then ALH dx'd in my left breast over the past year after 11 mammograms and two MRI's and two bx's. I have had breast issues for years, with my first mammo ordered at age 19, and my first bx four years agao. My oncologist and serveral other doctors strongly suggested a prophylactic bilateral mastectomy because (as they put it) ILC is insideous and sneaky! It catches you by surprise and can be quite advanced before being dx'd. And my breast was showing all the signs of going down that path - dense, thickening, and increasing calcifications through out. I had my BM last week w/ placement of TE and am at peace with my decision. I could not live w/ the constant worry and close monitoring. Best wishes. - Jean

BTW: They found atypical lobular cells in my "healthy" breast as well after the BM. That breast had not been the worry over the past year.