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Topic: Diagnosed with ILC - RARE to be Triple Negative?

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

Posted on: Dec 6, 2017 08:07PM

Krissy37 wrote:

Hello

I posted on the Triple Negative board and now Trying here. I was diagnosed ILC Triple Negative. 2 cm mass on ultrasound at 1:00 position - higher up towards my muscle/ chest wall. Waiting for CT scan appointment for staging. This is my second time with cancer. I had DCIS about 10 years ago at age 37, Lumpectomy and rads.

I am told mastectomy and 6 months chemo will be my treatment this time as I can't have more radiation.

I've searched the boards and cannot find anyone else with ILC -TN. Anyone else facing or have faced this particular diagnosis? I'm really scared

Dx 3/19/2008, DCIS, Right, 5cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Dx 11/6/2017, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- (IHC) Surgery 1/25/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/30/2018 AC + T (Taxol)
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Dec 7, 2017 12:21AM - edited Dec 7, 2017 12:32AM by Icietla

Hi Krissy. I am so sorry about your having another bout with breast cancer. Yes, yours is a rare diagnosis. Yes, we have other members with that diagnosis. You are not alone.

https://community.breastcancer.org/forum/5/topics/858187?page=1

https://community.breastcancer.org/forum/71/topics/825314?page=1

More members with your diagnosis are on Agatha's thread linked here. Agatha's diagnosis was changed before she started Chemotherapy.

https://community.breastcancer.org/forum/71/topics/858708?page=1%E2%80%8B

(((Hugs)))

My latest (Stage IV) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Dec 7, 2017 05:02PM AgathaNYC wrote:

Hi, Krissy -

I just left a response on your thread in the Triple Negative forum. It is rare, but it happens. Turns out that I have a mix of IDC and ILC.

Hope your treatment goes well!

... grateful for my pCR Dx 9/11/2017, ILC/IDC, Right, 6cm+, Stage IIIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 10/5/2017 AC + T (Taxol) Surgery 3/4/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 4/17/2018 Whole-breast: Breast
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Feb 16, 2018 05:31PM Ginagia1 wrote:

I am Triple negative with both ILC and IDC. I have a five percent bit of e+DCIS but am considered TN.


They missed the lobular cancer with every scan, only discovered it at surgery


Dx 2/2017, DCIS/ILC/IDC, Left, 6cm+, Stage IIIC, Grade 3, 6/12 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 2/28/2017 AC + T (Taxol) Chemotherapy 2/12/2018 Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Feb 17, 2018 03:37PM lightseeker wrote:

Hi Gina,

I have similar Dx, ILC TN; I'm also Pleomorphic. I was going to mention Agatha but, I see she has a post above yours. I also did ACT but, my Doc also added Carboplatin. I am onto radiation now and then, most likely, Xeloda.

My cancer was never seen in 10 years of mammo/sonos. The Dr who reads the scans believes that it grew between my last mammo and my dx, the following May as opposed to not having been seen on scan. It's aggressive and fast growing. It was very obvious on CT and PET.

You may also want to find out about your Androgen Receptor status; lobular TN tend to be positive. There are trials going on for this now.

xox

Eve


This is some godless, fucking bullshit. PILC TN Chemo: AC, Taxol x12,Carbo x4 , then Rads and Xeloda Dx 6/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/24 nodes, ER-/PR-, HER2-

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