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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 04:49AM - edited Dec 7, 2008 06:49AM 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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Sep 12, 2018 09:17AM robinblessed54 wrote:

Yes, ILC is covered for BMX and all reconstruction/revisions as long as you live with this. I chose the BMX because my PS said there is a greater risk of recurrence with ILC. I didn't have BC in the right breast, but had pre-cancerous cells which sealed my decision was right. I didn't want to be waiting for the other shoe to drop. Do what you feel is right.


Dx 9/2/2014, ILC, Left, 1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 9/25/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/15/2014 Arimidex (anastrozole) Hormonal Therapy 12/30/2014 Aromasin (exemestane) Surgery 3/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/14/2015 Femara (letrozole) Surgery 12/21/2016 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
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Sep 12, 2018 06:41PM Meow13 wrote:

The only statistic I have seen is one that says at diagnosis those with ILC 33% have cancer in both breasts. Anyone care to post a link to any other statistics I may have missed?

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Jul 25, 2020 12:14PM LillyIsHere wrote:


“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy
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Aug 15, 2020 06:32PM jessie123 wrote:

It seems to me if that is true most surgeons would recommend BMX for ILC. However, I was given the choice and I don't remember many people on this forum saying their surgeons recommended a BMX because they had lobular. The decision was a very difficult one for me and I did tons of reading before making my decision --- I really didn't find any medical literature recommending one or the other for lobular.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Aug 30, 2020 02:29PM momof2winsplus wrote:

I was 43 and having my second mammogram. The first one said I had dense breasts and to come back in a year. I had no symptoms, no lump. My mammogram showed some calcifications. When radiologist zoomed i, there was a slight shadow. After ultrasound and biopsy, ILC was confirmed. They thought it was only 1.4 cm and that my nodes were clear. MRI showed 5 small masses. But after DMX, they found 3.4 cm mass with lymphovascular invasion and 2 lymph nodes positive with extracapsular extension. None of my doctors could feel anything on exams even when they knew where the mass was. It was just luck that they found it instead of waiting another year. My treatment plan was based on Oncotype number which has not been validated for ILC or for premenopausal node-positive women. We need more research to find proper treatments for ILC instead of just assuming it will respond as IDC.

Dx 12/12/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 2/18 nodes, ER+/PR+, HER2- (FISH) Surgery 1/23/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/5/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/19/2021 Prophylactic ovary removal Hormonal Therapy 12/3/2021 Femara (letrozole)
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Aug 31, 2020 10:41AM InfusionConfusion wrote:

I was diagnosed May last year after I had symptoms of a 'thickening' on my left breast and some pain. At first it was missed in every test - mammogram, ultrasound and physical examination. The doctor was a bit inexperienced and just thought I had lumpy breasts as I had no family history, etc. I was advised to get an MRI but convinced myself I was just over worrying. 10 months later, it seemed to grow and the pain got worse. I just wanted to know what it was because I could feel it was something. I got the MRI and it turned out to be lobular carcinoma, around 10cm and in a few lymph nodes! The sneaky lobular cancer had hidden in my dense breasts and everyone missed it. Once it was confirmed by biopsy and as I was 43, I got everything thrown at me - chemo, targeted therapy, radiation, double mastectomy and hormone therapy. I've just finished the bulk of it but will be on tamoxifen for a while. I wish I could let more women know that they need to get MRI if they feel symptoms (anything different) and are told they have dense breasts. If I hadn't gone back, I dread to think of the outcome.

Dx 5/31/2019, ILC, Left, 6cm+, Stage IIIB, Grade 1, 4/4 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 6/22/2019 Perjeta (pertuzumab) Targeted Therapy 6/22/2019 Herceptin (trastuzumab) Chemotherapy 6/22/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/6/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Radiation Therapy 1/13/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 2/27/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 31, 2020 11:20AM Mavericksmom wrote:

I had IDC , lumpectomy, re-excision, chemo and radiation (24 nodes removed due to failed SNB, all neg) in 2003.

I refused Tamoxifen or AI

I thought I would never get breast cancer again, largely because I was told so many times that it comes back in the first five years, rarely after that. NOW, I know that is completely wrong, but I was told that by doctors!

Then after a long fall of seeing specialists for multiple other health issues, I ended the year with a diagnostic mammogram due to pain in left breast. (I might add, I was ALWAYS told pain is NOT a symptom of breast cancer. Also, WRONG! ) Nothing showed up on the mammogram but they did an US and it showed up on that. A new ILC in the same breast.

Biopsy in 11/2018, left mastectomy 01/2019 with DIEP reconstruction. I tried AI for 6 months and it raised my cholesterol significantly. I wasn't in agreement that lessening estrogen is a good thing for all post-menopausal women with breast cancer, so I quit and my only regret is that I ever took it in the first place.

As for BMX, I wanted that but was refused. I was told the cancer hospital I went to has a policy of not removing a healthy breast unless the patient is BRCA + ! At first I was angry. Now I see it as "water over the dam," and I put it behind me.

Then the other "Big C" aka Covid 19, came and for me, breast cancer is no longer what I worry about.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Oct 23, 2020 08:47AM - edited Oct 23, 2020 08:58AM by Springdaisy


Dx 9/2020, ILC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Radiation Therapy Surgery Lumpectomy: Right

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