Can ILC be seen on MRI in most cases?

emmacat

My mother was diagnosed with ILC at age 47.  I am 42 and haven't been diagnosed but am having lots of anxiety.  I have my first consult with a breast surgeon on Monday for a mammogram and to discuss my risk factors.    I want to get regular screening MRI's and am planning to request this and will pay out of pocket for them, but don't want to sound like an idiot.  Are MRI's effective at catching ILC early?  My mother's was not caught early.

kar123

I'm pretty sure I'm a fairly rare case, but mine was not captured on MRI, ultrasound, or mammogram.  It was around 7 cm.  Pretty big.  I was told it was fiborous tissue. 

sgreenarch

I had two tumors. Larger one (2cm) was caught on mammogram, and second smaller one was caught on MRI. My radiologist insists that most lobular BC can be picked up on MRI. I applaud you doing this self pay if it puts your mind at ease and you can afford it. Most important is to go to a center with top imaging equipment and radiologists. I switched imaging centers right before mine was caught and I always wonder if the place I'd been going to for a few years before that just missed it. Was an assembly line kind of place. Always met only technicians. By chance, at the new place, the head radiologist read my films and called me back in immediately for that sonogram. I'm convinced that with ILC (or a hx of it in the family?) one needs to be choosy and assertive about scanning. I had no hx, so didn't know better. Was just fortunate. Do your research before doing this and go to a top center. Can also request that your films be reviewed by others if you wish. Don't get too neurotic , but be aware. Good luck.

emmacat

Thanks for the responses ladies.  I'm going to Hoag breast center and am pretty confident they are a top center.  I cannot afford it, but am doing the consult and mammogram out of pocket, as well as the MRI, which hopefully the doctor will agree to let me do.  I have insurance with an HMO, assembly-line type of place (w/ very high deductible) so that's why I'm going outside the HMO.  I've been collecting all my mom's records today and compiling a good timeline to make my case.  She had a mass that was called a "benign cyst" show on a mammogram 14 years before she was diagnosed.  They didn't find the ILC until the mastectomy.  I'm trying to move out of the paralyzing fear I have and be pro-active.  My consult is this Monday.  

Kiss77

Mine was caught on MRI and the PET confirmed. Mammogram and US didn't show it.

O2BAKAT

I was 47 when diagnosed with ILC, mammogram, (7years) ultrasound and MRI all did not show anything abnormal even though there was a large tumor that was palpable and visible. I was lucky I had a spot a surgeon needed to see due to MRI, they looked at lump and insisted on biopsy...I do not trust many tests now

lekker

Emmacat - I have two friends, one in California and one in Virginia, that found studies to participate in for  BRCA negative women with family history of breast cancer.  They did this because their insurance wouldn't pay for mri's.  I have Kaiser - an HMO - and they have done pretty much everything I've wanted as long as I could make a good case for it.  If you have dense breast tissue, a mammo isn't going to be able to see anything and that plus your mom's cancer might make a good enough case to give you a breast mri.  My 1.5cm ILC tumor was palpable, but didn't show up on a mammo.  It did show on ultrasound and MRI. After my mastectomy they found a separate 2.5mm (tiny!) ILC tumor and multiple areas of LCIS that never showed on any of the imaging.

emmacat

Hi Lekker,

That's great to know about Kaiser.  I live in Italy, so it may be difficult for me to participate in the study.  I do come home twice a year to California though, so I'll look into it.  The radiologist needed additional images of my right breast today (same one I had bloody discharge from 6 years ago).  She didn't know about the discharge, so I'm wondering if it's just my dense breast tissue in that spot, or something I should investigate further.  I have a really high deductible plan with Kaiser, so basically I'd be paying for the MRI with them too. Hoag has been very accommodating about getting me appointments quickly and they give you the results right away.  I may just bite the bullet and pay for the MRI while I'm here.  

wyo

I also had a great experience with Kaiser. I can't agree with the assembly line description that was not my experience. The mammography process and coordination was seamless compared to what I hear women talk about on this site calling around trying to find a surgeon and an MO that will see them.  It sounds like you want to explore all options which makes sense for all of us. 

Biopsy on same day as diagnostic mammo results 2 days later. Breast surgeon appointment next afternoon then over to plastic surgeon same day- surgery in 2 weeks on the day I selected.  I went out of plan for radiation because they contract with a center a mile from my house and I had the option and they pay for it.  Even though you have a high deductible plan (your choice) versus a PPO- I would inquire what type of breast screening/diagnostics and pharmacy benefit are recommended and if those are covered by co-pay or all counting toward meeting the deductible. 

lisa137

Mine didn't show on mammo or US -- or at least not well enough to not be considered "just dense tissue" (but ALL my breast tissue was dense so wtf?) but it showed so well on MRI that even I could see it well enough to go "Oh wow, would you look at that?!"

jbokland

 This is my MRI when the Ultrasound and Mammogram were inconclusive.  The Blue indicates the ILC.    Interesting, my CT scan afterward did not show anything, either.

jbokland

Lisa,

Your situation sounds so similar to mine!  I went in because of the 'thickening' I felt in my left breast,  I had several US after the mammogram and was advised it was just me, hormonal changes, etc.   7 weeks later, it was getting larger and I went back and got the news.  Its so important to know your body and be insistent!

I just had my bmx on 12/23.  I did have lymphnode involvement on the left side so they removed.  I am waiting my pathology to know exactly what my treatment will be.

You had chemo?

emmacat

hi jboklad,

Thanks for posting. Is that with a contrast agent?  

jbokland

Yes that view was with contrast  .  I think it looks like a Doppler radar, showing that there is a helluva  storm  coming!

,,,

farmerlucy

Jbokland - Forgive my ignorance, but I've always wondered what they look at when one gets an MRI. Is it a series of pictures, a compilation? Did you get just the one image or a series of images on disk? I've never actually seen one of my MRIs (three, two premx).  Is that the outline of your breast in that picture, perhaps compressed?? Thanks for your help!

jbokland

no apologies! This picture is a bit distorted because I am laying on my belly with my breasts dangling in hollowed cones. They take a series of pictures, first without contrast; then with.  (They inject you with IV contrast).  The particular photo I shared was the most "telling" to show the cancer cells. The good news with they were not close to my chest wall. 

I got a print out of all the pictures as well as a disk.  

Hope that was helpful!

sandra4611

From personal experience, no, it was not seen on MRI with contrast. Cancer was in the other breast but before the surgery they did an MRI to make sure they weren't missing anything. Nothing seen. I had a bilateral mastectomy anyway. "Good side" had LCIS. I was mad at first that they didn't find it until I started reading more and found out how hard it was to find in dense breasts.

jbokland

I had a similar experience Sandra.  My first US and Mammograms missed my ILC, even though we could feel it!  I went back after 7 weeks and then the US showed.  Mine was 6 cm by that time.  LC is hard to see!

Did your MRI use contrast?

Momine

Sandra, I had exactly the same. They could see the massive hunk of ILC in righty, but declared lefty clear and dandy. I opted to raze the rack, and the path found LCIS in lefty.

emmacat

I need advice-should I do the screening MRI?  I need to decide in the next couple of days before I go back to Italy. My mammogram was "fine" but I have dense breast tissue and they needed extra images of an area.  

jbokland

they missed my ILC because they did not do an MRI initially.  I Aldo gave extremely dense breasts ( or did)   Do it....you will need the peace of mind. 

vlnrph

Jbokland, thanks for sharing that picture! Makes me wish I had requested copies of mine. I do have the radiology narrative reports...

Emmacat, have the MRI if you can afford it. Be sure to ask the price up front: there should be a cash discount (my insurance gets billed for $3500 but ends up paying less than that). It's good to have a baseline on record. Hope it shows nothing!

I had mammogram call backs for extra film views as well as ultrasounds for 2-3 years prior to diagnosis. Heterogeneously dense tissue was noted. My first digital screen, once the local clinic updated their equipment, was "clean" although the lesion was there, in my opinion. 

akler53

My Diagnosis. Highly suspicious mass found on mammogram at 2 cm. ILC confirmed with core biopsy . Plan was for lumpectomy. MRI done (because ILC can be sneaky apparently).  Second tumor identified  at 0.7cm. New plan... Mastectomy... In my case no lump was ever felt. Not by me or even my cancer surgeon.

jbokland

Sneaky bastard, is right!  

Anonymous

I had two breast MRIs post chemo and rads, and neither picked up the mild hyperplasia in my "good" breast. That was found in the pathology post-BMX.  I'm glad I chose to go through with ALL treatment offered me.  My gut told me that even though lumpectomy and rads were as "good" as a BMX, I wanted it all because of dense breasts and ILC's sneaky tendencies. I'm so glad I listened to my intuition; hasn't failed me yet.

jbokland

Thanks ClaireinAZ- Me too.  I just got my pathology report yesterday after electing BMX.  I too had hyperplasia in my 'good' breast.  I was also advised that I will need chemo and rad.  (I was expecting that information, but a bummer nonetheless).   I too am appreciative many things...that we found this sneaky cancer, that I made a good decision to have the BMX and that there is chemo available to treat.  Someone just posted on my facebook page  " WHEN SOMETHING GOES WRONG IN YOUR LIFE, JUST YELL 'PLOT TWIST' AND MOVE ON".  

 

Galsal

Mine wasn't felt either at 1.9cm by Radiologist, multiple Docs, etc.  Digital mammo found it but the ultrasound found five other spots in addition to the tumor in the same breast which were thought to be cysts or fibrous tissue all from 6pm to 12am on the inner breast area. 

Having been through a biopsy Eight years earlier (thankfully B9), I knew I'd not feel comfortable unless they were gone.  Chose a BMX.  Final path report showed in addition to the ILC, same breast had ALH and ADH in those "cysts".  Two areas on the other breast were found as ADH and PASH.  Best choice for my future health I ever made was the BMX!

lisa137

@jbokland I am in the middle of chemo right now, actually...which is why I post to threads and then forget I've posted to them and then run across them later and think "Hey, that sounds like me...oh wait. It is me."   

Your MRI shot illustrates exactly what I meant with mine...it wasn't just suspicious, it was THERE. Mine was more in a roundish shape than yours, and even closer to the nipple and farther from the chest wall, but there was no doubt that something big and ugly was there. 

Some things I've had to wrap my head around:

My breasts were not that large - barely a C cup, and only that because I had gained weight after getting together with my husband. Before that, just a B cup.

My ILC was 5.5 cm according to the pathology after surgery, but that was AFTER a biopsy in which eight (ouch!) samples were taken.

Mammogram and ultrasound COULD NOT SEE THIS THING in that barely-a-c-cup-breast!

Maybe now I'm just paranoid, but you know what? I have reason to be, and  I'd tell ANYONE with dense breasts to get any test they can get if they have any reason to be suspicious AT ALL. This stuff is SNEAKY and it's damn good at hiding.

emmacat

I was able to secure an individual plan through Cigna Global which covers me anywhere, including the U.S.  I'm going to wait 5 months before I get the breast MRI on my new plan.  I know the "Aurora Rodeo" is supposed to be the "best" for breast MRI, reducing the incidence of false positives.  Is there something similar?  I have $5,000 deductible, so basically would be paying for it.  The Aurora is expensive.

Which type of MRI machine should I be looking for?  There's a place Germany that I found with a radiologist that advocates for screening MRI's and has presented lots of research papers at American conferences, but the MRI machine she uses has not been approved by the FDA.  Does the machine make that much of difference?

lekker

I would think that the quality of any scan is dependent not only on the machine, but also the tech administering the test and the radiologist reading the results. Unless you find quantifiable data that shows clear superiority for one specific machine, I would just get it done where it makes financial sense. Good luck. 

Anonymous

I would agree, it depends not only on the MRI itself, but on the expertise of the radiologist (who reads it) and the tech (who performs the scan and positions you) as well. Just make sure the MRI has a dedicated breast coil; that is necessary for all breast MRIs.

anne