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Topic: Best Imaging for ILC mets

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

Posted on: May 23, 2018 06:34AM

Katzi17 wrote:

Hello ,

I’m in the process of diagnosis of possible stage IV de novo ILC . I’m not ready to talk about my specifics yet as I am in a very fragile state .

1. However , I need advice . Could anyone recommend an oncologist who really knows ILC and can find it on imaging ? Any clinic in the US is fair game for me I will go wherever needed but I’m in Florida

2.) if anyone can make imaging recommendations I would really appreciate it . Which imaging works best to find mets ?

Thank you . I will post my specifics later when I am ready .

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May 23, 2018 12:55PM - edited May 23, 2018 02:20PM by Gracejoy

My oncologist is one of the best in the field. He says lobular is hard to detect in scans. He goes by patient symptoms and MRI with contrast in specific area I have discomfort with Also bone scan is very sensetive tool for bone mets for lobular. Blood cancer antigens also will indicate mets also. I hope this helps. Hugs.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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May 23, 2018 03:54PM Katzi17 wrote:

HI would you be able to tell me who your oncologist is ? Also if they can’t tell from scans how can they be sure if it is stage 4?

Thank you so much for the reply

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May 23, 2018 07:01PM Gracejoy wrote:

Hi Katzi17,

I just sent you a private message

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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May 23, 2018 07:07PM Icietla wrote:

(((Hugs)))

My latest (Stage IVB) 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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Jun 18, 2018 10:19PM macmomma wrote:

Please post this publicly-- hard to find an ILC specialist.


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Jun 19, 2018 04:26AM dtad wrote:

Katzi17...so sorry you are going through this. IMO you should find a major university teaching hospital to be treated at. Good luck and keep us posted. We are all here for you.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 5, 2018 10:32AM klmpk wrote:

Dr. Moreno at the Mayo Clinic in Jacksonville is great. I'm ILC state IV and feel that he is on top of everything to do with breast cancer. He is head of the department and a very kind man.


Dx 8/31/2013, ILC, Left, 3cm, Stage IIA, Grade 1, 0/1 nodes, ER+/PR-, HER2- Chemotherapy 9/27/2013 AC + T (Taxol) Surgery 3/27/2014 Lumpectomy: Left Radiation Therapy 4/29/2014 Multi-catheter: Breast Dx 11/6/2017, ILC, Stage IV, metastasized to other, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 12/16/2017 Faslodex (fulvestrant) Targeted Therapy 2/15/2018 Verzenio Chemotherapy 7/28/2018 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)

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