Normal Imaging but ILC found

oncnavrn

Hello,

I'm new to this list serve and am feeling anxious about a recent change in my right breast.  I have an area of thickening and a feeling of achiness in the upper outer quadrant.  I had a diagnositc mammo and u/s which both read "normal" and "scattered fibroglandular."  I had papillary thyroid cancer 18 years ago and have 4 women in my family who have had breast cancer.  My BRCA 1 & 2 gene testing is negative.  I see my GYN this afternoon for a clinical breast exam.

I was wondering how many women diagnosed with ILC had normal imaging studies?  I am strongly considering asking my GYN to order an u/s-guided core needle biopsy, however, I'm wondering if a Radiologist will agree to do it considering the fact that there is no identified area in question (e.g., hypoechoic lesion, acoustical shadowing, etc.)  Are there other women who have had a similar history and ended up being diagnosed with ILC?

Thanks!

checkum

Hi -

 I had had a "normal"? mammo 1 year previous to when I found and detected the thickening in my breast.  A plain regular ultrasound of the suspect area was far more accurate at picking up the tumor than even the MRI or the diagnostic Mammo.  I would insist on one.

checkum

That is why you always hear of ILC being referred to as the "sneaky" cancer.

dlb823

oncnavrn ~ Hi ~ I think many of us who have had bc will agree that gyns are not the docs to be seeing if you have anything out of the ordinary that concerns you about your breasts.  The fact that you've had thyroid cancer already, coupled with the fact that there is bc in your family -- even though you're negative for any known genetic variant --  I think is reason enough to make an appointment with a breast surgeon/specialist at a full-fledged breast center, and get your current concern thoroughly evaluated.  The change you've observed in your right breast is most likely benign.  However, with your prior history, I think seeing an experienced breast expert is the way to go now, and will greatly ease your mind.   

Good luck, and I hope you'll keep us posted ~  Deanna

Hood1980

INSIST on a breast MRI.  My cancer was never found on Mammo or US even at 4.5 cms!  But a breast MRI did pick it up, but I never heard of it & it wasn't recommended until too late for me!  If you suspect something isn't right, then it probably isn't.  Don't let them brush you aside and tell you to come back again in 6 months to repeat mammo & US that still won't show it!!!  We have to be our own patient advocates, unfortunately, because the insurance providers don't like paying for the more expensive tests!

Anonymous

oncnavern-----I have a large area of "thickening" that  both my gyn and oncologist say feels like "normal breast tissue" when they do an exam; and every scan I have is clear (MRI/mammo/US--I'm high risk surveillance due to LCIS and family history of ILC); therefore they say they can't do a biopsy as they wouldn't know exactly where to do it. ("like finding a needle in a haystack"). But even so, I'll be bringing up the subject again with my gyn in June. Good luck to you.

Anne

wallycat

MRI was the only thing that found my ILC.  So-much-so that, after finding it, I was told to go back to the ultrasound for the needle guided biopsy and knowing where to look, the ultrasound still did not pick up the cancer.  I had to go back for a second MRI (this time needle guided biopsy) and it was detected that way.

lamuso

• My ILC was not found on 6 previous mammograms (yearly since I turned 40) nor by the ultrasound the nurse recommended for me at my last exam.  She felt something was a little 'off' during my examination and send me for the ultra sound that came back clear.  MRI was the only thing that showed it.  If that nurse had not been so insistant that I still go ahead and see a surgeon and let her decide if I needed a biopsy, I would probably still be undetected.  Do not wait.  Be your own advocate.

nash

I agree with the others--go to a breast surgeon and insist on a breast MRI.

ILC is very hard to see on mammo--my baseline mammo at age 37 was read as normal. Neither I nor my GYN ever felt the thickening over the years. It wasn't until a year after my first mammo that I felt a lump, which showed up on u/s (although only partially), and it wasn't until I had the MRI that the whole area of ILC showed on imaging.

amlg1

I am 62 and go every year faithfully fo a mammo since I'm 40.Went for routine check-up with gyno,everything was fine.Feb.2009 went for yearly mammo,and was called back for more views and u/s.not because of my breast but I had a few enlarged lymph nodes,a needle biopsey was done came back atypical cells.I then had to go for an MRI and something did show up on that,the last step was an MRI guided biopsy,because nothing was palpable.Surely then came bak ILC with nodes involved.Went b/s and decided to have lumpectomy.the surgeon also took out alot of nodes.That was last week.Monday I go back to find out what stage and grade.It was so shocking to hear I have cancer.I did the right thing every year,it' hard to believe that last year nothing showed on mamo,since my tumor on mri showed 2.5cm.

Northstar

On the day of my biopsy, nothing had shown up on the mammogram (although I and my PCP could feel the "ridge" of tissue) and only the ultrasound showed anything.   I'd get an MRI, as others have suggested.  ILC is very weird.

ck55

Please, please, please insist on an MRI. Like many of the ladies here, I had been having yearly mammograms since I was 35 (Mother had BC so I started early). They were always normal. Until Nov 06 I had some microcalcifications show up on the imaging. Had a biopsy done, found DCIS (the microcalcs) and ILC. There was no lump. Just a bit of thickening. After it was all said and done I had a 9 CM tumor and two positive nodes. If it hadn't been for the DCIS (which was the only DCIS found) I would probably be sitting here with that sneaky *#$% tumor growing happily away. Yes ILC is very sneaky. My BS called it evil.

Good luck with everything. Just know you will be fine, no matter what.

Cyndi

Merilee

Ditto here.  I had a clear mammogram 6 months before I was diagnosed

jpsgirl96

A mammogram found a very small area of DCIS with a micro invasion in my left breast.  Before doing any treatment, my breast surgeon sent me for a bilateral breast MRI...which found ILC, much more serious (larger, and it had spead to the nodes), in my right breast.  Not visible at all with mammography.  Breast MRI is a specific procedure - strongly suggest you have it.   Thinking good thoughts for you.  Leigh

oncnavrn

Thank you,everyone, for your encouraging words of wisdom. I had a breast MRI 5 months ago and it was normal. My GYN advised me to wait a few weeks or so to see if my right breast achiness and thickness goes away. If not, she'll order the MRI.

oncnavrn

Thank you,everyone, for your encouraging words of wisdom. I had a breast MRI 5 months ago and it was normal. My GYN advised me to wait a few weeks or so to see if my right breast achiness and thickness goes away. If not, she'll order the MRI.

Seabee

Go for the MRI.

My last mammgram did show an area  of suspicious density, but it was not conclusive, so it prompted the ultrasound and eventually the MRI. Something quite small showed up on US, but the MRI came closest to indicating the actual dimensions and helped insure that the surgery was successful.

I wasn't as faithful about getting mammograms as I should have been, but the one before the last, which was done four years earlier, was normal, and considering the fact that it takes years for a cancer to get big enougt to detect, it was probably there four years ago, and might not have been detected by mammo even a year before the density became detectable. As several posts here indicate,  a mammo taken as little as six months before diagnosis may show nothing.

LoriL

My mammograms have always been normal. I found the lump, and subsequently had another mammogram and ultrasound. The mammogram was normal, but the mass did show up on ultrasound. I ended up having a biopsy done that same day, which showed ILC. Prior to surgery, I had a breast MRI to check for other masses in the affected breast and the unaffected breast. The cancer did NOT show up on a breast MRI. My breasts are very small and dense. Given the fact that the cancer did not show on either mammogram or MRI, I felt that I did not have an accurate way to monitor for recurrence. I also did not have any reassurance that the unaffected breast was actually normal. For those reasons, I chose to have a bilateral mastectomy, which was just done yesterday. I'm awaiting the final pathology results, but it looks to be Stage 1.

Bottom line, even if you have a normal MRI, don't necessarily trust it completely.  

61linda

My last mammogram showed only what the radiaologist called a lack of definition in my right breast after years of clear mammograms. The ultrasound was not conclusive. We went straight to a stereotactic core biopsy which showed ILC. After doing a lot of research, I opted for a bilateral mastectomy due to other medical issues that made repeat surgery dangerous for me. The path report came back showing a previously undetected LCIS on the left and another LCIS on the right in addition to the originally diagnosed ILC for a total of three. The docs keep saying how unusual that is but the research shows LC is multifocal and 20 to 29% of women with this have contralateral involvement - that's a bit more than one on four which I think is a lot.



I echo everyone else here - find a breast center and get an MRI. Even then no test is absolute and the entire process is reduced to educated guesswork. The more expertise your doc has the better. Trust your instincts.



Best of luck.

dianaon

I felt my lump/thickening whatever, and it did not feel too much different than come & go cysts, but "not right". My prior 1/09 mamo was neg. The mamo in Aug. with close up ves of the area was "neg". I was told to come back in 6 mos for a sono, but refused- the total mass was 2.6 cm, neg nodes and vessels, TG, but who know what if I waited....

Any idiot knows yo must Bx a lump, or at least do a sono to confirm all fluid inside...

Anonymous

I have had mammo's every year since I was 36 (am 44 now) as I had a friend diagnosed w/bc who passed away after 2 short years and she insisted that I start getting them.  Every year including the diag. mammo that I just had in Jan 09 always came back normal.  I had felt a thickening, almost like jello left in the frig too long, right before I was scheduled to see my Dr. she also felt this area and ordered a sonogram as well, it was seen on the sono but never on the mammo.  After I had the core biopsy and was diagnosed by surgeon sent me for a MRI which did show the bc.  Like others have stated ILC aka the sneaky cancer.