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Topic: Size of tumor by MRI vs. reality

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

Posted on: Jul 8, 2007 08:46AM

nash wrote:

I am having my ILC tumor excised on July 19th. The MRI shows it as 4.8cm X 2.8 cm (right up to the chest wall), the CT shows it as 3 to 4 cm, and the surgeon thinks it's 2.5 cm based on physical examination. I'd like to think the surgeon is right on this, but how could the MRI be so wrong?

Does anyone have experience with how big their tumor was on MRI vs. how big it was in reality?
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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Jul 8, 2007 11:13AM swimfan wrote:

ILC is sneaky, mine was only seen by MRI...mammo's were clear, I could feel "it" and it barely showed on the Ultrasound. MRI had it at about 3.8cm at it's largest point...and officially ended up being 4.6cm. Good Luck

R (Recurrence Feb. 2009 1 SupraCL Node & 2 Axilla plus 1 spine met) Dx 4/4/2007, ILC, 4cm, Stage II, Grade 2, 0/5 nodes, mets, ER-/PR-, HER2-
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Jul 9, 2007 01:08AM wallycat wrote:

I also had clear mammo and breast MRI picked up a 9mm mass.
Actual tumor was 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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Jul 9, 2007 04:28AM nash wrote:

Yikes! I wonder how big my tumor really is, then. Good grief. The surgeon is absolutely convinced from her clinical exam that it's much smaller than the MRI shows, that I should not have neoadjuvant chemo and that I can get away with a lumpectomy. She's a very well respected surgeon who heads up the breast program at the university hospital here, so she's had a lot of experience.

But from what I've read and from what you gals have shared, MRI's are better at picking up ILC compared to other methods. I do have a gut feeling that my tumor is a big beastie, given how lousy I've felt the last six months, but at the same time I'd hate to pass up a lumpectomy if I can get away with it.

I guess I'll just have to wait and see what happens. Maybe I can take bets on the size--sort of like a football pool or something.
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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Jul 9, 2007 06:52AM Lynn12 wrote:

Nash,

My mammo did not detect anything, the ultrasound showed about a 1cm, the MRI showed about 1.5cm with another suspicious area in the lower right quandrant. Actual size was 7.5cm, multifocal. After the MRI, the surgeon still wanted to do a lumpectomy, but I insisted on a mastectomy. I was glad I did because I would have ended up with a mastectomy anyway, but with multiple surgeries. I think MRI would be more accurate than clinical exam, mine was never a lump, just a thickening.

Best of luck, keep us posted

Lynn
Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 9, 2007 10:12AM conniehar wrote:

Yep - mine was bigger than the MRI also. My MRI said 7.5cm, but mine was really 10cm! Mine also did not show up on mamm or U/S.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Jul 9, 2007 11:40PM figsgirls wrote:

Ditto for me. My tumor did show on an ultrasound, but not the mammos.
On ultrasound it measured 1.3cm. On MRI, 2 or 2.5 (I can't remember now). But my breast surgeon and the radiation doctor said it could be bigger or smaller, and they can never really be sure until they get in there and take it out.

It ended up being 4cm.

Good luck.

Donna
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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Jul 15, 2007 10:28AM kc5 wrote:

My tumor peeked through fibrous tissue on mammo; the surgeon thought it would be around 1 cm. She called me after my MRI to tell me it was much larger than they thought and could be 4 centimeters. The tumor was actually 2.3 centimeters and was positioned so close to my chest wall that the surgeon even removed the fascia from the muscles on the chest wall to get a good clean margin.

Good luck to you.

Linda
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Jul 15, 2007 11:26PM prayer wrote:

My mri showed a tumor at 6cm and then another mri showed tumor at 8cm.....actual size 4.2 dcis with 7mm (yes mm) idc tumor in the mix.

My mammos were negative but it did show on the ultra sound.
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Jul 16, 2007 02:35AM nash wrote:

Thanks for all the input, ladies. I appreciate it. My surgery is finally this Thursday, the 19th. I'm mainly worried about clean margins, since the MRI shows the tumor up to the chest wall. We'll see!

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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Jul 16, 2007 03:16AM meadows4 wrote:

my tumor was close to the chest wall also. My surgeon got clean margins by removing the entire amount of breast tissue down to the chest wall. If there is no tissue remaining on that side of the tumor, it is a clean margin.

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Jul 16, 2007 07:02AM mary2005 wrote:

This is my 1st time asking questions. I was diagnosed with DCIS in the right breast and had lumpectomy in 11/05 followed by radiation. After radiation I had breast reduction in 4/06 and follow-up surgery in 12/06 to remove hematomas. I had my 1st MRI 6/07 and the report said "a rapidly enhancing nodular mass measuring approx. 8 mm in diameter. The morphology and steep enhancement slope exhibited by this nodule must be viewed with concern and pathologic correlation is recommended." My rad. oncol. felt it was related to the surgeries but ordered an ultrasound. The ultrasound was done 7/12/07 and the radiologist couldn't find anything there. My March 07 mammogram and ultrasound didn't show anything. I'm going to call my rad. oncol. tomorrow. The radiologist recommended following up in 6 months but I'm not comfortable with that, especially after reading these posts. What were your next steps and what happened? Thanks for your help.

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Jul 16, 2007 10:27PM LauraGTO wrote:

nash -
Best wishes to you on Thursday. Try not to worry too much about the chest wall. My tumor (3.9cm) was at my chest wall too, and my surgeon was unable to get perfectly clean margins (although they were micro) at my chest wall, but convinced me that chemo and radiation would do their job. I've been fine since finishing all treatment almost a year ago. btw...biopsy, mammos and ultrasounds showed my largest tumor to be 2.5 cm. But during Mast. it was actually 3.9 cm.
Hang in there!
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Jul 16, 2007 10:46PM nash wrote:

Thanks! I appreciate the support. Will let you all know how things turn out.

Mary2005--I don't have an answer for you regarding the spot on the MRI. I would ask the radiologist what the plan would be after six months, and ask him/her to implement it now instead of waiting. I assume they would biopsy the spot seen on the MRI, and if that's the case, push for it to be done now so you don't have to stress out for the next six months. Good luck!
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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Jul 16, 2007 11:30PM mary2005 wrote:

nash,
I have an MRI biopsy on Thursday. I called my rad. oncol. this morning and she and the radiologist had discussed that if the ultrasound came back negative that the next step would be the biopsy. Sure hope the results come back quickly. Good luck to you on Thursday.
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Jul 16, 2007 11:32PM nash wrote:

mary2005--Thanks! Glad to hear your docs are on top of things. Hope your biopsy goes well, and that everything turns out OK!

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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Jul 16, 2007 11:36PM marshakb wrote:

Thursday sounds like a big day around the Lobular gals so Mary and Nash know we are all thinking of you and holding virtual hands with you guys on Thursday!!!

Love, Marsha (Hey Laura, where ya been? )
I'm not dead yet! Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Jul 18, 2007 10:53PM nash wrote:

Thank you Marsha! I will let you all know how things go.

I had my pre-op with the surgeon yesterday, and she had her radiologist reread the MRI. The good news was that he read the tumor as being 2.5cm instead of 4.8cm, due to some problem with the contrast enhancement which I didn't understand. I still don't know why the tumor would show 4 cm on the CT then, also. Anyhow, the bad news was that he read the MRI as showing the tumor as actually growing into the chest wall, as opposed to just being up near to it. Blech. So, whatever is, is, and I suppose I will be finding out soon enough!
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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Jul 26, 2007 12:45AM scarednancy wrote:

Hi,
My ILC was detected in my yearly mammogram and confirmed with the ultra sound. My surgeon wasn't satisfied with those tests alone so she ordered MRI's on both breasts prior to surgery. The surgeon told me she thought the tumor was 1 cm based on all of the test, mamm, ultra and MRI. The tumor was in fact 1.1 cm and no node involvement. So in my case the MRI was no different than any other test in predicting the size. They were all accurate.
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Aug 2, 2007 07:07AM deboodle wrote:

My sister had ILC 13 years ago, and just now it has come back in the chest wall. She couldn't have a biopsy because the cancer is entangled amongst the nerves, and is 6cm in length. They are relying heavily on heavy doses of radium, steroids and chemo to clean it up......

Deb
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Aug 7, 2007 02:57PM mtlion322 wrote:

My mammo and u/s did not show my lump, and I had to point out where I was having the pain at and where I orignally found the lump! Lobular sure likes to hide from what I have been reading! It also seems that an Mri is really the only way to find it! Maybe we should legislate for a mammo and if clear go one more step for the mri and alot of us would catch it sooner! I don't know what is right, but somehow it seems like we are not catching this at an eariler stage where we would all have a good chance to fight for our lives!

Cindy McLean

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