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Topic: Cancer "sprinkled" through breast?

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

Posted on: Apr 1, 2021 05:28AM

saltmarsh wrote:

Hey there,

So, my oncologists were thinking from my initial mammogram and ABUS reports that the ILC was confined to one area, and I was likely a good candidate for a lumpectomy, radiation, and tamoxifen. Then my SO saw my MRI and said unfortunately, it turns out that there are tiny bright spots sprinkled throughout my breast over a much larger area, and I'm going to need a mastectomy.

Has anyone else had a presentation like this?


Dx 3/8/2021. LCIS, ILC. Surgery 4/19/2021 mastectomy, right
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Apr 1, 2021 08:21AM BevJen wrote:

salt marsh,

I've never heard it described quite like that, but I have ILC and mostly it presents as a diffuse cancer rather than a lump. Perhaps that's what your doc was trying to describe.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Apr 1, 2021 03:33PM abigailj wrote:

hi Saltmarsh, yes, I was originally told the ILC in my left breast was under 2 cm and could be dealt with by lumpectomy, just like the IDC in the right breast. But when I went for the MRI 2 much smaller spots turned up and MRI guidedbiopsy showed they were ILC too. Could have had a big lumpectomy and rads and smaller lumpectomy on IDC side but chose skin sparing BMX with immediate DIEP flap recon with no rads needed and that was the right choice for me, more peace of mind and good cosmetic outcome although long recovery period

Have you met with PS to discuss what might be feasible in terms of perhaps a larger removal of tissue but not a mastectomy with fat grafting or other cosmetic procedure after? I hope you can have an outcome that works as well as possible for you.

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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Apr 1, 2021 05:32PM saltmarsh wrote:

@abigailj: I get to meet with my PS for the first time on the 13th. My concern is my surgical date is set for the 19th, so that's not a lot of time in between finding out what she says my viable options are and when I have my mastectomy. I'm trying to learn as much as I can now, and I'm pretty sure I'd like an autologous reconstruction if I can have one...I know I'm not a candidate for SIEP, but I was hoping for DIEP. And I found out today that if I want autologous reconstruction, they don't have enough time to do that on the 19th; we'd have to either switch my mastectomy date, or do this in two parts.


Dx 3/8/2021. LCIS, ILC. Surgery 4/19/2021 mastectomy, right
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Apr 1, 2021 06:29PM LillyIsHere wrote:

saltmarsh, I am glad MRI showed how ILC was spread. Usually, ILC is very sneaky and doesn't show on scans. Mine did show in one sport and I was advised for a lumpectomy. Considering my dense breast and the fear of future recurrence I asked for BMX. After BMX, pathology showed ILC and LCIS in both breasts. I met PS only once before the surgery and he suggested implants since I wasn't a good candidate of other options. The day of the surgery, BS removed the breasts and PS placed temporary implants. In 3 months I had another surgery on replacing temporary with regular implants.

“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 11/30/2019 Femara (letrozole) Targeted Therapy
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Apr 1, 2021 10:15PM BCat40 wrote:

my guess is doctor is talking about calcifications. Usually that means you have an area of LCIS or DCIS in addition to a mass of invasive cancer. If you already have invasive cancer they don’t like to leave areas of LCIS or DCIS in when taking the mass out.

Dx at 40. Did not tolerate hormone deprivation treatment. Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/2/2020 Whole-breast: Breast
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Apr 1, 2021 10:48PM ShetlandPony wrote:

It is possible that if your surgery type has changed from lumpectomy to mastectomy, they will need to reschedule you anyway, because of the time allotted in the OR, especially if you choose reconstruction. You could probably find out more by calling the office to talk to your surgeon's scheduler.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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May 22, 2021 04:58AM Too-Ticky wrote:

I'm sorry you've been given this news, Saltmarsh. Mine is also throughout the whole breast as multiple cancers and thickened areas - with one particularly large tumour. They've not done an MRI for me, they can tell that from the various mammograms, ultrasound scans and biopsies I've had. I can also tell from the widespread changes that I can feel throughout the whole breast that this is several large areas of thickened tissue and (developing more recently) some lumps. I'm booked in for a mastectomy in a few weeks time. Due to needing radiation, reconstruction won't be an option for me for a long while. I hope you are given some clarity on your options soon.

Dx 5/21/2021, ILC, Right, 6cm+, Grade 2, 1/2 nodes, ER+/PR+, HER2-

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