Posted on:
May 23, 2018 06:34AM
Joined:
Apr 2018
Posts:
14
Latest activity:
Mar 28, 2020
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 .
Log in to post a reply
Gracejoy
Joined:
Mar 2016
Posts:
45
Latest activity:
Feb 10, 2021
Log in to post a reply
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
Katzi17
Joined:
Apr 2018
Posts:
14
Latest activity:
Mar 28, 2020
Log in to post a reply
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
Gracejoy
Joined:
Mar 2016
Posts:
45
Latest activity:
Feb 10, 2021
Log in to post a reply
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
Icietla
Bridge of Sighs
Joined:
Feb 2016
Posts:
1,266
Latest activity:
Dec 10, 2018
Log in to post a reply
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
macmomma
Joined:
Jun 2018
Posts:
61
Latest activity:
Jul 30, 2019
Log in to post a reply
Jun 18, 2018 10:19PM
macmomma
wrote:
Please post this publicly-- hard to find an ILC specialist.
dtad
Joined:
Apr 2015
Posts:
2,276
Latest activity:
Mar 1, 2021
Log in to post a reply
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
klmpk
florida
Joined:
Feb 2018
Posts:
56
Latest activity:
Jun 26, 2019
Log in to post a reply
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)