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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: ILC that is ER positive, PR negative

Topic: ILC that is ER positive, PR negative

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

Posted on: Apr 16, 2017 07:37PM

jenn70 wrote:

I was recently diagnosed with ILC that is ER+, PR-. I am told PR negative is rare for this type of cancer. Anyone out there with a similar diagnosis? What type of treatment did you receive?

I have not received HER yet, initial results were inconclusive. Thanks in advance for your replies.

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Apr 17, 2017 10:42PM lohoff wrote:

I have the same diagnosis. I had a lumpectomy followed by 4 rounds of T/C chemo. My last chemo was March 27th. I was not aware that this diagnosis was rare.

Dx 11/22/2016, ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Surgery 12/21/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/23/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes
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Apr 18, 2017 12:30AM - edited Apr 18, 2017 12:31AM by Meow13

yes, i had one ilc tumor one idc with lobular features my er was 95% but pr was less than 1%. I took AI drugs for 4 years I am 5 years plus NED.

I had mx with no radiation and I did not do recommended chemo, oncodx 34.

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Apr 19, 2017 08:57PM momand2kids wrote:


my dx through oncotype was er+pr-her2_. My lumpectomy pathology was er+pr+her2-. So, not entirely sure.... although I do think pathology trumps the oncotype--anyway 4 rounds of A/C, radiation, anti-hormonals and her I am almost 9 years later.....

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Apr 21, 2017 12:33PM trinigirl50 wrote:


It's fairly uncommon for ILC to be PR- (but not really rare, rare is triple negative ILC). There are a few of us that are PR- on a Facebook ILC group. It means you're likely (but not definitively) to be classed Luminal B. Means more aggressive type, but responds better to chemo than luminal A type, and responds better to Letrozole (as opposed to Tamoxifen). That has been my understanding from reading and researching relevant articles (scientifice/medical) on the internet. . I did 4 AC, followed by 3 Taxol (had to stop due to bad reaction), then 3 Taxotere, 25 rads and now on Femara and Zometa, indefinitely. Just to be very clear - I am not a doctor, just someone who reads up as much as possible to try and understand my diagnosis and its implications for treatment.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Apr 22, 2017 03:00PM kira1234 wrote:

I've just been diagnosed with ILC that is er+pr-. This is my second time around. I'm having a double mastectomy on May 2nd and I'm not handling the news well.

Dx 6/1/2010, ILC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/10/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/3/2010 Hormonal Therapy 10/5/2010 Aromasin (exemestane)

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