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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Do you get yearly MRI?

Topic: Do you get yearly MRI?

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

Posted on: May 10, 2009 05:47PM

oreolau wrote:

I was diagnosed with ILC in May 2006--had chemo (A/C and taxol), mastectomy of the tumor side, and radiation.   I had a MRI last year along with the mammogram, but this year it wasn't brought up until I asked for it.  My insurance company is not wanting to cover this, even though the original cancer did not show on the mammogram.  Do you ILC survivors get yearly MRI's?  I'm a little concerned about not getting one, since the mammo really doesn't diagnose ILC.

Dx 5/5/2006, ILC, 6cm+, Stage IIIC, Grade 2, 0/10 nodes, ER+/PR+, HER2- Chemotherapy 5/10/2006 AC + T (Taxol) Surgery 10/10/2006 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap, Latissimus dorsi flap
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May 10, 2009 06:47PM HensonChi wrote:

I agree that we need MRI's.  I was sent for my first mammogram since the end of chemo....and the doctor said and I quote..."I don't know what good this is going to do,  we never saw it on the mammogram.  I can look at the shadows and compare the old one to the new one I guess, and see if I see anything."  Very comforting right?   I did ask my oncologist about it and didn't get a response.

Dx 1/22/2008, ILC, 1cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2+
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May 10, 2009 06:49PM wallycat wrote:

I had bilateral mx and neither my surgeon nor my onco have done (or think it necessary) to do any tests.  I know this is a very gray area and a very emotional topic.

My onco thinks we should go by symptoms...and is happy to order anything I feel I want.

My breast surgeon wanted to do an MRI at the 1 year, but then he changed his mind.  Even tumor markers are not a reliable measure so they don't do them for me.

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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May 10, 2009 09:14PM amlg1 wrote:

I was just dx  with ILC.I go every year for mammo,the only reason I went for further testing was because my lymph nodes were enlargedMRI showed that there was some abnormalty in my breast.MRI biopsy came back ILC.Getting nodes out and lupectomy May 21.hoping I made the right decission.I would think every year I would get MRI.So this must have been growing for awhile,before it metast in my nodes and was never picked up,no lump nothing.Scary !!!!!!

Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+
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May 10, 2009 09:24PM Annakin wrote:

I get an MRI every year and a mamogram in between.  The Dr. where I have my mamograms says that because ILC is so sneaky and I already had it in the other breast, she wants to be very careful.  My insurance has not given me any problems.


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May 10, 2009 11:31PM nash wrote:

I have an annual MRI and an annual mammo, and space them six months apart, so I'm having some sort of imaging twice a year. Haven't had any trouble with the insurance yet.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 11, 2009 10:41AM Kleenex wrote:

I THOUGHT I was going to alternate MRI's and mammograms, but as it turns out, I am apparently not considered "high risk" enough by either my oncologist or my insurance company for them to cover annual MRI's. I actually do have great insurance, believe it or not. I'd feel better about this if I wasn't just diagnosed last year with a sneaky cancer that was OUTSIDE the field generally compressed on a mammogram. Still, I had an MRI last year prior to surgery, and the only thing that lit up was the tumor we knew about, so I'm not going to make a scene until about the second year out. And, really, with low grade ILC, isn't it more likely to show back up 10 to 15 years out?

The protocol where they really don't "look for" mets or recurrence without symptoms is another one of those weird things about breast cancer (along with all of the "choices" one "gets" to make re: local and systemic treatment). It is apparently important to catch it early, but if we're kind of late in catching it, it doesn't matter as much?! Okaaaaaay.


Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 11, 2009 01:03PM CathleenP wrote:

Hi Good People,

I get an MRI once a year, six months after the mammomgram/sonongram. Unfortunately, breast imaging doesn't image the ovaries simultaneously. Recently we found that both of my ovaries were covered with primary ILC, my original breast cancer. I've had the ovaries removed now, but have to face more treatment. I'm really sick of this....


Cathleen Dx 5/5/2009, ILC, 2cm, Stage IV, 6/11 nodes, ER-/PR-, HER2-
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May 11, 2009 03:54PM oreolau wrote:

Ladies, your replies have been very helpful to me.  My surgeon's office called today and scheduled me for an ultrasound in October, which would be six months after the mammogram.  This makes me feel a little better as my original cancer did show on the ultrasound, but not on mammogram.  I simply had an area that felt hard. I still plan to argue with my insurance company because this is just crazy.  I was glad to hear from a couple of you that you get the MRI yearly without problems with insurance.  We have a PPO and good insurance, too.  Cathleen, I'll be praying for you.  You have reminded me to call my ob/gyn and discuss having ovaries out to not have that as a concern. 
Dx 5/5/2006, ILC, 6cm+, Stage IIIC, Grade 2, 0/10 nodes, ER+/PR+, HER2- Chemotherapy 5/10/2006 AC + T (Taxol) Surgery 10/10/2006 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap, Latissimus dorsi flap
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Aug 1, 2010 03:39PM - edited Aug 1, 2010 03:45PM by lynn1575

At my first mammogram and ultrasound after lumpectomy, chemo and radiation, the radiologist suggested alternating mammo/mri every 6 months because ILC is so hard to image.  They did see a 5 mm density on mammogram that they thought looked like a cyst on ultrasound in my radiated breast.  They barely looked at my "good breast" this year even though last year they did 3 ultrasounds on both breasts. At the time, I agreed because I was so anxious to get out of there without another biopsy.  When I got home I reviewed my reports from my mammo, ultrasounds, and mri when I was first diagnosed.  The Mri did not even show my tumor!  Has anyone ever had a false negative MRI? I'm not sure what to do now. I discussed it with my oncologist - she said it's my decision.  She was simply going by radiologists recommendations.  My mri last year was $2800 - it would probably be covered this year because I met my maximum out of pocket for this year. Next year, however, I would end up paying for most of it. I'm not sure it's even worth the time, anxiety and expense if it won't pick up anything anyway.


Dx 7/2009 ILC 1.5 cm grade 2/3, 0/10 nodes-lumpectomy,TC x 4, 35 Rads, Tamoxifen

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Aug 5, 2010 04:17AM hlya wrote:

wallycat: I asked the same question to my ONC who told me that MRI can only confirm the tumor over 0.5cm,  and this is the size that finger can feel as well after mastectomy (with flat chest). Also, MRI is like x-ray and even more harmful to your body/cells considering the pros/cons in cases like yours. 

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Aug 10, 2010 11:38AM mymountain wrote:

Just had my yearly mamo and MRI (alternate 6 month).  I was going to refuse the 6 month MRI, due to the stress it causes, but chickened out and agreed to continue.  Surgeon used to write 'dense breast" on the script, now it reads 'high risk". 

She had my  digital mammo up on the computer screen and I was amazed how much detail is visible when she zoomed in on spots.  I swear you could see a speck of sand.  The scattered calc I had in that breast were exactly the same as the last mammo.  Also amazing that you can see the split screen in the same magnification. 

dx5/08 ILC 1cm/dcis in margins stage l grade ll 0/3 nodes er+pr- her2-,mast/diep recon

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