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Topic: Just dignosed but my mammo was clean 9 month ago.

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

Posted on: Jul 7, 2021 08:30PM

Birdie18 wrote:


I've been getting mammo every year and it's been always came out negative. Last one was done 9 month ago and was negative ( or maybe they didn't catch it) But I felt a lump a month ago and it turned out to be an ILC.on Right breat, 4cm. Stage IIa, Garde 2.

I read that ILC is harder to be seen on Mammo than other type of BC..Was it true for you? I just met with PS and BS. So many information to take into consideration and I'm still having hard time deciting what to do with my left breast.. DM or UM?. Please share your experience.

Dx 6/18/2021, ILC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 8, 2021 07:21AM - edited Jul 8, 2021 07:22AM by Moderators

Birdie - Welcome to We are so glad that you reached out to join our Community and share your story here with our members. We're sure some will be able to help and give advice and support to help you make the best decision. Until then, please let us know if we can provide any assistance to you as you find your way around. We are here for you!

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Jul 8, 2021 08:48AM Dani444 wrote:

Birdie- I will second what the mods said, I am glad you have joined this community. So much information to learn here. It is so overwhelming at first and it really does get better when you have your plan in place. I totally understand that getting there can be a lot. Getting a prophylactic mastectomy on your other breast is such a personal decision. Take the time to talk in detail with your breast surgeon about the risks/ benefits. I also found my nurse navigator tone helpful when making decisions.

As you can see in my info below I went back about a year and a half later to get a prophylactic mastectomy to my healthy breast. My first mammo after cancer came back as a BIRADS 4c and I needed a biopsy. It was benign, but I couldn’t handle the emotional side of it. I spoke in length with my breast surgeon and she agreed that even though it doesn’t affect my overall survival that it was reasonable to get the mastectomy. I had direct to implant with my first UMX but ended up needing rads due to positive nodes. I say that because getting good symmetry has been a challenge in my case. These decisions are so hard and I am sorry we have to deal with any of this. I know others will be along to help. We are here for you.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/19/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 8, 2021 12:22PM DutchieGirl wrote:

I didn't have ILC but my mom did. It was not detected through a mammogram, though she did have one about nine months before diagnosis. My mom's nipple started to invert. It did not present as a lump. She opted for a single mastectomy and then read that ILC has a higher rate of bilateral spread. At her next mammo (of her remaining breast) calcifications were noted and she asked to have her breast removed. Her surgeon agreed. That was 23 years ago. It should be noted that my mom was stage 3C and she is alive and well. She will be 81 next month.

Lori-Anne Dx 11/7/2018, IDC, Left, 1cm, Stage IIIA, ER-/PR-, HER2+ Surgery 1/13/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 3/3/2019 AC + T (Taxol) Radiation Therapy 7/28/2019 Targeted Therapy Herceptin (trastuzumab)
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Jul 8, 2021 06:02PM Birdie18 wrote:

Dani. thank you for sharing your story.

I just had a follow up appointment with my BS

Both my dr and I agreed that the surgery is needed asap on my right breast since my lump has grown so fast. Dr said it takes longer to schedule a DMX with immediate recon. So I’m going for umx so I can start treating the cancer. Now I feel little better. At least the first of many decisions has been made. I might ends up with asymmetrical breast but my health comes before beauty at this time Besides my PS sounded very confident about matching my breasts if I choose UMX.

Thanks and please pray for a fast surgery date!

Dx 6/18/2021, ILC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH)
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Aug 19, 2021 04:04AM beth1965 wrote:

hi there I had 9.2 cm tumor that did not show up on mammogram or ultrasound. You could actually visibly see and feel the lump but wasn’t showing anywhere. Also had had mammogram for previous 7 years or more never showed even though they said growing for awhile since I had large tumor and 17 positive nodes.

Lobular presents itself differently or I guess better phrased it doesn’t present itself at all it hides. So many woman with lobular have the same story many like myself with undetected large tumor and nodes. Most of us not found early.

But many including myself have fared well and are long time survivors so apparently woman can be stronger than ILC. Learning about it and asking questions like your doing is helpful it definitely helped me just being on this site. Lots of great people and information here. ❤️ Beth

Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/14/2012 Mastectomy: Left, Right Chemotherapy 3/6/2012 AC + T (Taxol) Radiation Therapy 8/13/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/19/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/20/2021 Faslodex (fulvestrant) Targeted Therapy 10/15/2021 Kisqali Targeted Therapy
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Aug 19, 2021 08:04AM wallycat wrote:

If you do a search on my screen name, you can find my saga. Yup, clear mammograms for nearly a decade, even the DAY I was dx. Nothing but an MRI picked up my cancer, and even that did not look spiculated an cancer-like.

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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Aug 19, 2021 08:13AM moth wrote:

Even IDC doesn't always show up. Several months after a clean mammo I had a palpable lump.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone

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