Topic: What's your ILC story?

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

Posted on: Jul 6, 2007 06:49AM - edited Dec 7, 2008 08:49AM by Lynn12

Posted on: Jul 6, 2007 06:49AM - edited Dec 7, 2008 08:49AM by Lynn12

Lynn12 wrote:

When I was diagnosed, I came to this board and read the 15 pages of messages from other women with ILC. It was such a huge help for me. That thread is gone so I'm starting this thread so we can all post our stories.

I went to the OB/GYN in Aug. 06 and told him my right breast appeared to have gotten smaller in the past year. He checked for lumps but didn't find anything. Got my mammo in Oct. 06. They called me back for a 2nd because they noticed the right breast was smaller when comparing to my previous mammo in 2003. They still saw nothing but did an ultrasound where they did find enhancements. They did the core biopsy right then and 4 days later on 11/7/06, I was diagnosed with ILC. Surgeon sent me for a MRI which showed a small enhancement area in upper outer quadrant of right breast. Dr. wanted to do lumpectomy, I insisted on mastectomy.

Right breast mastectomy on 12/4/06. Diagnosed with stage IIB. 7.5cm multi-focal, ER+/PR+ her2-. the cancer was found in all four quandrants of my breast. They say it's rare for breast cancer to cause your breast to shrink. There was never a lump, but felt more like a thickening.

6 rounds of TC (taxotere,cytoxan) from Jan - May 07.
30 rads from Jun - Jul 07.
Started tamoxifen May 07
Prophylatic lb mastectomy with bilateral DIEP - Dec. 10, 2007

Switched to Arimidex - Sept. 08

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 6, 2007 09:26AM notready wrote:

My husband found something in my right breast and said "what's this?". That's how it began with those two little words. It was not a lump, but a thickening. This was near the end of August, 2005. I saw my GYN doctor in September and she felt it and ordered a mammogram & ultrasound. I had these done and was told by the tech (after the radiologist looked at the films), that it was just a cyst. I went on vacation and when I came back, there were messages from my GYN doctor to call her. She did not like the report and wanted me to see a breast surgeon. I went to one (that I knew) & took my films, and he said you can't see anything on the films, but he didn't like what he felt (in the meantime I got a letter from radiology about the mammogram and ultrasound, stating that it was probably a cyst, but to have another one in six months). The surgeon put a needle in the area in the office, and got a little piece of tissue and sent it to pathology. That came back negative but he was pushing me to have it taken out. I didn't really want to and argued with him about it, but he talked me into it. I had the biopsy and it came back lobular ca. (ER+,PR+), and he hadn't cleared the margins. It was very small and they didn't feel it had spread so they were only talking about radiation at this point. Had the lumpectomy end of November and sentinal node biopsy. One out of three nodes was positive. They wanted to go in again and take out more nodes but I said no, because it wasn't going to change the recommended treatment at all, and I didn't want to increase my risk for lymphadema. I started chemo in Jan, 06 (6 cycles of TAC), and then radiation to breast and axillary area for 34 treatments. So far, so good. Needless to say, if it weren't for my wonderful GYN doctor and breast surgeon, it could have been a very different story.

Dx 11/11/2007, ILC, 2cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2-
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Jul 6, 2007 10:58AM wallycat wrote:

My mammos have been clear since I was 40.
I was having very vivid breast dreams for 3 nights and finally rolled over and thought maybe it was an omen to do BSE (which I don't like doing because I was very fibrocystic).
When my hand went over my right breast, I got an odd feeling. There really wasn't anything to detect, but my gut said dig and find out why you are feeling these "gut" instincts.
I went for my annual mammo (2 months late) and they said it was perfectly normal.
I told them there was an area of concern for me so they gladly did an ultrasound. The radiologist said there was a tiny shadow too small to biopsy so they would send me for a breast MRI. The MRI located a different area from the ultrasound, 9mm. I was asked to go back and have the new area ultrasounded. Nothing.
Back to the breast MRI for a needle guided biopsy.
Lobular cancer. The image showed 9mm but it turned out to be 1.8cm.
My breast surgeon said there was NO WAY the human hand could have felt that tumor---size, location, lobular and with a perfectly clear mammo, he would have been comfortable sending me home. He has NO IDEA what made me dig for this. Frankly, neither do I...just a gut/dream "feeling" about the whole thing.
Even the radiologist doing the biopsy said that looking at the MRI, she doubted it was cancer...3% chance were her words. She cried when she phoned me with the news.
I had a lumpectomy and SNB. My surgeon thought bilaterals were too drastic. After all was said and done, he said if it was what I wanted, he would do it....22 days out today.
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 6, 2007 12:09PM conniehar wrote:

I had had 3 clean mammos, but discovered a "thickening" one day in Dec 06. Went in for another mamm - normal. Then went for ultrasound - this was also normal, but the techs had the radiologist come in and she felt my breast. She agreed that she could feel something and suggested a biopsy. I then went to a breast surgeon who sent me for an MRI. The sneaky lobular finally showed up there. I had a core biopsy and was told it was ILC on 3/8/07.

Had left breast mast. on 3/21. Tumor was 10 cm (my breast also shrunk,Lynn). Had 1 sentinel node with micromets - all other 11 nodes negative. Had port inserted on 4/16. Started chemo on 4/20. I am in a clinical trial - 15 weekly doses of AC, then I move to 6 bi-weekly taxol treatment. Then on to rads.

I am currently considering removing my right breast when all this is over.

Thanks for starting this thread!
Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Jul 6, 2007 03:48PM nash wrote:

I am recently diagnosed, so I don't have a full picture of everything yet, but I'll share what I know so far.

I just turned 39 years old, have two young children, and my mom has Stage IV IDC HER+++. So I've been well educated on her type of bc, but had never heard of lobular until now. I had a baseline mammo at age 37, which they read as normal (ha!). This past May, I decided to do a BSE, which I hadn't done in a few months, and my hand went straight to a hard lump in my left breast. I knew right away it was malignant.

I called my OB/GYN, and the idiot girl at the front desk told me it would be six weeks before doc could see me. I pushed, and his nurse ended up calling in an US for me w/o me having to go in. The US lead to the core biopsy in the beginning of June, which came back ILC, ER+ PR+ HER2 neg.

So I've been spending the past month getting scanned in an assortment of ways. So far, there are four estimates of the size of the tumor--the US said 1.2cm, the surgeon (by feel) says 2.5 cm, the CT says 3 to 4cm, and the MRI says 4.8cm (and includes the observation by the radiologist that there are no clean margin between the tumor and the chest wall).

This size discrepancy has lead to much disagreement between the oncologist and the surgeon, and agonizing on my part, on whether to do neoadjuvant or adjuvant chemo. I've finally settled on adjuvant, and am tentatively scheduled for surgery July 19th. I decided to put my faith in the surgeon's assessment of the tumor, and I'm optimistically going in for a lumpectomy. I figure they can always take more off if necessary--they can't put it back on, though!

I'm also waiting on the results of my BRCA testing. If it's positive, the docs want me to also have my ovaries out b/c of the 50% chance of ovarian cancer. This suggestion has also caused much agonizing on my part, and I really can't say I'm comfortable with surgical menopause at age 39. If the BRCA is positive, I plan on meeting with a gynecological oncologist to discuss other means of ovarian cancer risk management.

The plan for after surgery is radiation, then TAC.
Stage IV Pleomorphic ILC, initially diagnosed at age 38. Mets to brain, cranial nerves, bone and breast Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 7/19/2007 Lumpectomy; Lumpectomy (Left); Lymph node removal 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) Hormonal Therapy 7/1/2018 Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy 7/3/2018 External Local Metastases 7/3/2018 Brain Radiation Therapy 7/27/2020 External Local Metastases 7/27/2020 Brain Radiation Therapy 2/23/2021 External Local Metastases 2/23/2021 Brain Chemotherapy 3/1/2022 Other Dx ILC, Other, Stage IV Radiation Therapy Other part
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Jul 6, 2007 03:59PM gracejon wrote:

I went for a routine mammogram. The year before I went closer to home at a outpost of the same health system and decided I would never do that again since it was the fastest and least compressed one I had ever done. I went back to the main facility. I hadn't heard any report and got nosy (work in that health system and pulled up results). It said I needed return for additional views. When a few more weeks went by and I still had not been notified, I called the imaging center for results. They looked it up while I was on the phone and said "Umm, someone will call you back" A nurse called back and said I needed to schedule more views. It took another week or so to schedule. At that test the radiologist said I would like to ultrasound this spot. At the u/s she said I needed a biopsy and could I come back in an hour. I had a core needle biopsy that day and a week later radiologist phoned and said you have breast cancer. I had symptoms of pain but had previously been told not to worry about breast pain. I also had noted that the breast appeared to have gotten larger. I had a bilateral mastectomy with LCIS, ADH and ALH in non cancer breast along with LCIS and ILC in other. I had chemo course and no radiation. BTW, I then received a postcard in the mail to call to come in for more views. About another 4 weeks went by and I received another postcard saying the second mammogram was normal and come back in a year for a routine screening mammogram.

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Jul 6, 2007 04:53PM jpsgirl96 wrote:

Great idea. I went for a routine mammogram in December 2005 and they found some calcifications, left breast. After consultation with a breast surgeon, had a stereotactic needle biopsy in January 06, found DCIS with micro invasion of ductal cancer. Because I have large, dense breasts, breast surgeon sent me for an MRI. MRI found more suspicious stuff in left breast AND some suspicious stuff right. Ultrasound also showed the stuff on the right, so had multiple biopsies mid-January 2006. All clear EXCEPT one place - ILC in the right breast. Bilateral lumpectomy and entinel node biopsies early February 06 - no node involvement left, sentinel node positive right. Axillary node dissection in early March - 5/15 additional positive nodes. Chemotherapy (TAC x6) March to July, bilateral radiation (about 17 'tatoos') August-September 06 (30 plus 3 boosts). Tamoxifen since October 1, mammograms and MRI in January 07, all clear - next mammogram and onc and surgeon visits this month. Feeling well, hair is finally losing its post-chemo curl, though still salt-and-pepper.
I'll be 51 August 20 - no biological children, not much family history (maternal aunt had post-menopausal IDC), feel that the DCIS was a blessing since without it, the ILC would have been found much much later - too late, probably. Thank my guardian angel every day that my breast surgeon ordered that MRI.
Dx 1/15/2006, ILC, Stage IIIA, 6/16 nodes, ER+/PR+, HER2- Surgery 2/28/2006 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel, Underarm/Axillary Chemotherapy 3/22/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 7/31/2006 Breast
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Jul 6, 2007 07:02PM suzie14 wrote:

I discovered my lump when I rolled over in bed at 2:30 a.m. Thursday, May 19,05. Twelve hours later I was in the clinic scheduled to see an NP. Before I got seated, the tech came out and said since I found a lump they set me up to see a GYN doc instead (my usual GYN was off that day).

The GYN I saw said she thot it was just a cyst but wanted me to get a diagnostic mammo and u/s anyway.

I couldn't get in until that next Monday. The radiologist wanted to do a biopsy right away but because I was taking Vit E she wanted me off that for a few days. That Thursday (the Thursday before Memorial Day week-end) I had my biopsy. ON MEMORIAL DAY the radiologist called me at home and told me I had cancer....ductile! (For some reason there was a major typo or major error in declaring it ductile. I found out at my 1st appt with my onc that it was lobular. Some mistake, eh?)

On June 27, 05 I had a left mastectomy, scheduled for 11:30 a.m. One node had micromets. Total size of my tumor was >5cm (3 of the 4 quadrants in the left breast had ILC....glad I decided to go with the mast!) Twelve hours later I had to have emergency surgery because I was bleeding internally. My surgeon is the best and without her quick arrival at the hospital I would more than likely be in much worse shape than I am today.

I started TAC in August '05, finished in November and began a series of 28 rads in December. Took my 1st dose of Arimidex at the end of January, '06.

If I knew then what I know now I would have had a double mast because of the sneakiness of lobular. I won't sign up for a prophylactic mast, though!!

There is NO history of BC in my family. Weird, isn't it?

Thank you for this thread,
Dx 5/30/2005, ILC, 5cm, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 8/3/2005 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/8/2005 Breast, Lymph nodes Hormonal Therapy 1/31/2006 Arimidex (anastrozole)
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Jul 7, 2007 03:52AM shrink wrote:

ILC was one of 4 cancers in my right breast detected in my pathology report. I asked the doctor how it was possible to have so many in one relatively small breast. He said it wasn't all that unusual and the treatment for all is the same. ACx4 and Tx4 followed by mast, maybe more chemo and radiation followed by I forget what. I'm Stage III since my tumor is 6 cm and the possibility of IBC exists, this is being treated agressively. No spread to major organs but 3 nodes look "suspicious". Looks like I'm in for the long hawl. But the tumor shrank quite a bit after my first treatment and side effects have been minimal.

Dx 5/23/2007, IBC, 6cm+, Stage IIIC, Grade 3, 21/21 nodes, ER+/PR-, HER2-
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Jul 7, 2007 04:07AM Lisa9753 wrote:

Wow susie, that's all I can say.

I thought what I had was quite weird. I had a 3.5 cm tumor, and everyone thought what I was feeling was a cyst too. Turns out we were all feeling the tip of one of the invasive parts of my tumor. So ultrasound picked it up, the mamo didn't even see it. I did six months of chemo to shrink the tumor, Adriamyacin, Cytoxin and Taxotere(allergic to it) so switched to Taxol. It killed off my tumor, by surgery all that was left was a pile of dead cancer cells. But after surgery, I found out a separate quadrant of my breast, away from where the tumor was, was full of LCIS. Boy am I glad I had not only the mastectomy, but a prophylactic mastectomy on the other breast. I reconstructed afterwards, had latissimus dorsi reconstruction, and have experimental devices as implants -the Cohesive Gel Silicone, or nicknamed gummy bears. I love my reconstruction and am glad to have reduced my chances of recurrance from 20%+ down to 1%
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Jul 7, 2007 06:34AM qhlisa wrote:

In November 2006, I underwent bilateral breast reduction. I had been suffering from thoracic outlet syndrome for years. Annual mammograms since age 35, with no abnormalities (other than very dense, large breasts). The pathology from the reduction came back showing a .7 cm ILC, and LCIS, pleomorphic type on the surgical margin from an unknown location in my left breast. Due to the reduction, I was not a candidate for diagnostic imaging, and I underwent bilateral mastectomy with SNB on left side. I was very fortunate that the SNB was possible, and that my breast surgeon was willing to try it. Due to the reduction, my doctors thought it was very unlikely that the lymphatic pathways would be intact. The SNB was negative, and after I healed from my surgeries (a whole 'nother story), I began tamoxifen. (My tumor was highly ER/PR positive, HER negative), and ended up being less than 1cm.

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