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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 06:37PM

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 09:42PM 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.

Just trying to figure this all out! 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) Radiation Therapy 4/26/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/5/2017 Arimidex (anastrozole)
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Apr 17, 2017 11:30PM - edited Apr 17, 2017 11:31PM 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 07:57PM momand2kids wrote:

Hi

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 11:33AM trinigirl50 wrote:

HI

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 4/13/2015 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 02:00PM 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 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/7/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right
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May 8, 2017 01:06AM rivercaralee wrote:

Hi,

My cancer was also ILC which was estrogen positive but progesterone negative. I read, at the time of my diagnosis, that hormonal therapy was not as effective as in people who have both receptors. Recently, my Oncologist confirmed this finding. I did try it, Letrozole, but the side effects were too severe. I opted not to do Chemo, and with an oncotype score in the intermediate range, was supported in this decision by my docs. I did do bi-lateral mastectomies. I am 3 years out now and doing great.

1.6 cm. Pre-menopausal age 50 at Dx. oncotype score 23. Dx 3/26/2014, ILC, Left, Stage IB, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 5/7/2014 Mastectomy: Left, Right
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May 14, 2017 07:32AM gkodad wrote:

I'm also ILC, ER+/PR-/HER- . However, I previously had breast cancer in the opposite breast that was DCIS.IDC that ER+/PR+/HER-. This last time, 2 nodes were positive. So I"m pretty sure none of statistics reflect my situation. I've had BMX, AC+T, but had to discontinue Taxol due to severe neuropathy, radiation and aromasin. I'm two years out of my last diagnosis and doing well.

I think we all are seeking the "right answer" but everybody's situation is unique. Demand your doctors give you the best information and ask as many questions as you need to ask. Then do what seems right for you.

Dx 1/2002, IDC, Left, <1cm, Stage IA, 0/3 nodes, ER+/PR+ Dx 7/1/2011, DCIS, Left, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2- Dx 3/30/2015, ILC, Right, 5cm, Stage IIIA, Grade 2, 2/10 nodes, ER+/PR-, HER2- (FISH) Surgery 3/30/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Right Chemotherapy 4/30/2015 AC + T (Taxol) Radiation Therapy 8/23/2015 Chest wall Hormonal Therapy 11/1/2015 Aromasin (exemestane) Surgery Mastectomy: Left
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May 15, 2017 03:26AM gerrib wrote:

i had ILC Er ~70% pos Pr neg HER neg. I was on Tamoxifen at the time for previous IDC. One doctor mentioned that that could be the reason for Pr neg and lower Er positivity, but I'm not sure if that s correct. I had UMX no radiotherapy no chemo, though it was recommended. That was about 15 months ago.

2 primary breast tumours -IDC at 62, 4 years later pleomorphic ILC in other breast. Occurred whilst taking tamoxifen Dx 12/22/2011, IDC, Left, 2cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 1/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/28/2016, ILC, Right, 2cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/16/2016 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 4/4/2016 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 24, 2017 06:42PM - edited May 24, 2017 06:43PM by shuttld

I was recently diagnosed with ILC on May 3.  I had a lumpectomy on May 12.  Path report showed clear margins and no ca in  two sentinel nodes removed.  All great news until I met with the medical oncologist who said because I have a high Ki67, further testing was needed, an oncotype DX that will take two weeks to get results.  My path report showed ER+, PR-, HER-2 negative, Ki67- 45% (High).  So now the possibility of chemotherapy comes into the picture.  Just when I thought I would only be facing 20 sessions of radiation.  So now I'm in a holding pattern for at least two weeks.  Not looking forward to the possibility of 24 weeks of chemo.

Dx 5/3/2017, ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Surgery 5/12/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 7/3/2017 Whole-breast
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May 25, 2017 11:41AM kira1234 wrote:

Shuttld I'm in the same place as you except this is my 2nd time around. My one difference is my Ki67 is low this time. Last time it wss 14. Ihad a oncotype test done last time which put me in the gray area which I believe is because of the lack of pr. I'm due to see my oncologist on the 1st. I'll let you know what he decides.

Dx 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/7/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right
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Aug 1, 2017 07:46PM WindyCityWarrior wrote:

Shuttld, your story sounds familiar. Stage 1a, had a lumpectomy, clear margins, no lymph mode involvement. Met with the radiologist and all set to wrap this up. Then boom! My OX score came back at 30. After the recent TailorRX study, my oncologist told me they were going to revisit scoring, with "high risk" beginning at 25. Four rounds of chemo will cut my reoccurance risk in half - from about 18% to 8-9%. So, this will be a longer road but I am going to take it.

My best wishes to you

She Persisted Dx 6/2017, ILC, Right, 1cm, Stage IA, Grade 2, 0/9 nodes, ER+/PR-, HER2- Chemotherapy 8/9/2017 Surgery
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Aug 1, 2017 07:47PM WindyCityWarrior wrote:

So sorry, Kira

She Persisted Dx 6/2017, ILC, Right, 1cm, Stage IA, Grade 2, 0/9 nodes, ER+/PR-, HER2- Chemotherapy 8/9/2017 Surgery
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Aug 1, 2017 08:33PM kira1234 wrote:

Windycity thanks, I find the point of moving on to chemo is 25 now. I didn't have any testing done this time but 7 years ago I came up 24. My oncologist said chemo. I never finished chemo

This time oncologist never even considered chemo. Very interesting to know

Dx 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/7/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/2/2010 Hormonal Therapy 10/4/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right

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