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Topic: Anyone start out with "just" LCIS

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

Posted on: Feb 9, 2008 06:46PM

Kimber wrote:

Diagnosed with LCIS 1/15/08 after core needle biopsy led to excisional biopsy which showed multi-focal LCIS. Oncologist wants a re-excision, she is afraid there could be something invasive hiding in there. My mother and sister both had BC (my sister diagnosed young with an invasive cancer), but I tested negative for BRCA 1 and 2. My left breast (outer quadrant) where the biopsy site is, has been very dense and extremely lumpy and feels funny when I raise my arm (even before biopsies) but I don't notice any dimpling.

Just wondered if any of you first found LCIS and then ILC and how it was found and if you were proactive or chose monitoring if it was "just" LCIS. I see so many posts where LCIS diagnosis left to PBM and a more invasive cancer was found.

Gee, a month ago, I would not have been able to read my own post as I wouldn't have known what any of this stuff meant...... Now I know why my family is so confused!
Thanks for any information,
Kimbo

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 9, 2008 06:48PM Kimber wrote:

I mean to type "LCIS diagnosis led to PBM"

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 10, 2008 04:05PM nash wrote:

Well, I had ILC surrounded by LCIS. That doesn't answer the question really, because I never had any idea I had LCIS until I found the ILC. 

The ILC and LCIS in my breast are both of the pleomorphic variety, and given that the ILC was surrounded by LCIS, I have a hard time believing the ILC didn't grow directly out of the LCIS. Maybe it didn't--I have no idea. The docs dont' know, no one knows. That's the problem with all this crap--it's all a guessing game. 

You have to follow your gut, and if PBM feels right to you, then go for it. The only thing to keep in mind is that a masectomy doesn't give you a 100% guarantee of no bc--it's impossible to remove all breast tissue. My surgeon told me I'd still have a 5% risk of a local recurrence even with bilat mast. So it comes down to risk management and your personal risk tolerance.

Don't know if I helped you or if I muddled the situation more, but wanted to share my experience.

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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Feb 10, 2008 05:00PM Lynn12 wrote:

My path report also showed both ILC and LCIS.  My ILC was 7.5cm and multi-focal.  I also don't have any idea if the LCIS came first.  They said my ILC was grade 1 and probably there for years, however I had a benign tumor removed 6 years before the bc dx...so who knows.

I had a mastectomy on my right breast that had the cancer in Dec. 06, then I had a proph. mastectomy/bilateral DIEP in Dec. 07. 

My breast shrunk from the cancer and even though it didn't show up on the mammo, the radiologist wasn't comfortable that my breast was smaller compared with my previous mammo and called me back for an ultrasound.  Looking back, I was very ignorant to the changes in my breast and probaby would have caught it sooner if I had gone to the Dr. when I first notice the breast was shrinking. 

I told my girls and my friends to know your breasts and question if you see or feel any changes.

Best of luck to you!

hugs,

Lynn

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 11, 2008 01:36AM SLH wrote:

I had ILC and LCIS diagnosed with a needle biopsy.  There was no lump or dimpling, really no sign of anything, but a high density mammogram caught it.  It was stage 1, but I chose a bilateral, because my sister has IDC and my mom has ovarian c.

Strangely, the genetics counselor didn't think I needed to be tested for the BRCA gene.

sally 

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Feb 11, 2008 11:13AM nagem wrote:

Well, I had both LCIS and ILC—both very high grade—and neither showed up on imaging tests. I eventually got a bilateral mastectomy to put my fears to rest.

nagem (underthestinkwoodtree.blogspot...) Dx 9/23/2005, ILC, 1cm, Stage IIA, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Feb 12, 2008 02:08PM awb wrote:

Kimber--I have a friend who started out with "just LCIS"; wasn't offered any tamoxifen or closer monitoring.  Within 4 years, she was diagnosed with both ILC and IDC, both breasts were affected. Did her LCIS go on to become an invasive bc? Probably not, because LCIS is generally thought to be non-invasive  (my bs said probably only 5% would become invasive bc). Was there invasive bc there all along that went undetected? Quite possibly, as she wasn't closely monitored at the time. Or did it develop over those 4 years? A more likely scenario, as LCIS increases the risk  of an invasive bc in the future significantly.  She told me she was very glad that I "was doing something about my LCIS" and wished she had been able to. I worry like we all do, but most of the time I feel pretty confident  by taking the tamoxifen for prevention and being very closely monitored by mammos and MRIs.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Feb 12, 2008 06:41PM lollybeth wrote:

I had LCIS is my left breast in 2005 and chose close surveillance (mammos, sonos, and MRIs) rather than either tamoxifen or prophylactic mastectomies. In 2007 I turned up with DCIS in my right breast and had bilateral mastectomies in August. In my case, the close surveillance worked and I haven't had to deal with invasive disease. I consider myself lucky to have discovered the LCIS because without it I would just have been getting annual mamms and might have not found anything until it was already advanced disease.

Lollybeth

Dx 7/7/2007, DCIS, 2cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+
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Feb 12, 2008 07:39PM Kimber wrote:

thanks everyone for the info - it's all very interesting....

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 12, 2008 07:39PM Kimber wrote:

thanks everyone for the info - it's all very interesting....

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 13, 2008 04:40PM danix5 wrote:

HI Kim!!!!

Daniella

Dani 2 time BC winner😜Triple + Surgery 1/16/2008 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Dx 1/10/2017, DCIS/ILC/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Chemotherapy 2/23/2017 Taxol (paclitaxel) Targeted Therapy 2/23/2017 Herceptin (trastuzumab) Hormonal Therapy
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Feb 14, 2008 07:36AM Kimber wrote:

Hi sexy girl!

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Feb 15, 2008 08:20AM LizM wrote:

I was not diagnosed but with ALH (atypical lobular hyperplasia - a step down from LCIS) 8 months before I was diagnosed with ILC and IDC and LCIS and DCIS.  I started out with microcalcifications and stereo biopsy and excisional biopsy showed ALH.  My breast surgeon offered Tamoxifen but I turned it down and chose close surveillance.  8 months later my mammo was clear but ultrasound picked up the tumor.  I had both the mammo and ultrasound as part of close screening.  Thank God I had the ultrasound.  I am afraid to think what my diagnosis would have been because when they caught it 8 months later it was already stage II (2 cm with 

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Feb 15, 2008 08:26AM LizM wrote:

oop hit the submit button before I finished.

(2 cm with one positive node).  I truly believe the ILC/IDC was already there when diagnosed with ALH.  Lobular is very sneaky and can be hard to pick up on imaging.  If I could go back I would have also had an MRI when diagnosed with ALH and would have taken Tamoxifen.  I still don't understand how I went from ALH to stage II in 8 months with a clear mammo and clinical breast exam every 3 months. 

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Feb 15, 2008 10:43AM LauraGTO wrote:

I had two tumors. The smaller pea-sized one I "found" was LCIS. But then a larger - 3.9cm tumor was seen on US and it was ILC.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 25, 2008 10:09PM Kimber wrote:

Laura,
Where are you from in IL? I am from IL too, although I live in VA now. My mom's name was Laura!
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Mar 28, 2008 12:35PM petelzmom wrote:

Hello

I was diagnosed with ILC discovered on routine mammogram (7+cm). Follow up testing MRI discovered IDC in opposite breast. I did not feel any of the tumors they were in very dense tissue and I do tend to be lumpy.

I have advised all of sisters and friends to demand multiple methods for detection. I was BRAC negative. No breast cancer in my huge family, I'm the first,a cousin was diagnosed 6 months after me. Scary. Make sure they test you every which way but sunday!!

Good Luck

Dx 11/5/2006, ILC, 6cm+, Stage IIIC, Grade 3, 3/15 nodes, ER+/PR+, HER2-

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