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Topic: ILC oncotype score

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

Posted on: Sep 1, 2019 01:23PM

JudyO wrote:

Just curious, I was stage 3A so no oncotype for me! But in doing research often it is stated that ILC has a worse prognosis than IDC. However, I have noted that ILC tends to usually be in the lower onco range. I even have seen someone with 3 nodes be in the lower range. Just curious...

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Sep 1, 2019 02:33PM OnTarget wrote:

Mine was 16

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 1, 2019 02:56PM Meow13 wrote:

mine was 34

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Sep 1, 2019 09:23PM nash wrote:

When I was originally diagnosed in 2007 at age 38, I was Oncotype 18. Had a local recurrence 8 years later while on Tamoxifen. New primary contralateral side two years later, quickly spread to my brain. No rhyme or reason to this shit.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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Sep 1, 2019 09:44PM Meow13 wrote:

Nash, so sorry to hear the cancer reared its ugly head. You did all the recommended treatment, hopefully Ibrance will be successful.

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Sep 1, 2019 11:06PM ShetlandPony wrote:

See the recent report on Lobsig.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Sep 2, 2019 11:33AM nash wrote:

Thanks, Meow13. The Ibrance is working well for me so far--it even seems to be crossing the blood-brain barrier!

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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Sep 12, 2019 09:26AM GoMama wrote:

Mine's 33, 0 out of 6 nodes

I got cancer, cancer didn't get me. Dx 5/9/2019, LCIS/ILC, Right, 2cm, Stage IIA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 6/24/2019 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy 8/14/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 13, 2019 08:11PM jessie123 wrote:

Onco - 19 no chemo. 6% recurrence score with Al's

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Sep 14, 2019 07:58AM - edited Sep 14, 2019 07:58AM by Whatjusthappened

My oncotype was 13 and a 13% chance of recurrence with AI's.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Sep 28, 2019 03:53PM AnnC2019 wrote:

ILC (multi-centric). ONCODX 12. It was submitted before node report, so looking at Micromets & Node Positive (1-3) page,I have a 13% recurrence at 9 years if on AI or Tams. I have MacroMets in the one node, so not sure if that changes anything.

Dx 6/19/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/1 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/14/2019 Arimidex (anastrozole) Surgery 8/27/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 11/4/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 29, 2019 05:35AM - edited Sep 29, 2019 07:26PM by Mavericksmom

This Post was deleted by Mavericksmom.
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Sep 29, 2019 06:47PM jessie123 wrote:

What I don't understand is this --- Although it reported my recurrence score to be 6% with AI's the Onco group doesn't know that I have LCIS. What about all the other risk factors we may have.-- shouldn't they be included in the score?

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Sep 29, 2019 06:52PM Meow13 wrote:

jesse, your biopsy pathology should also be considered oncodx is just one piece of information to help decide treatment.

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Oct 18, 2019 06:45PM jessie123 wrote:

thanks Meow --- my tumor was a good one --- it's just that darn LCIS they found after my lumpectomy that worries me. Also, now that I'm finished with treatment I have the time to read more about ILC. It seems (if I'm reading correctly) that many of the trials on BC treatments don't include ILC patients. Our tumor is very different than IDC. I'm not even sure the Oncotype test was tested using ILC patients. This BC is very inconvenient -- I hope that I can forget that I had it soon as it still occupies my thoughts way too often.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Oct 24, 2019 09:36AM - edited Oct 24, 2019 09:55AM by mac5

I have either a Recurrence or Metastatic Cancer, depending on who is doing the Staging I think. The first occurrence was IDC and DCIS. This second occurrence is ILC with pectoral muscle involvement. I'm told the ILC is NOT tethered or attached to the chest wall.

I'm told my Oncotype Score is 18. Since only the breast biopsy was Scored I am curious. Is this Score based on IDC recurrence or ILC recurrence?

I’m told Mitotic Score is 1 and it is Grade 2. Both of which should indicate a slow growing cancer. The diagnosis estimated the tumor as 6 cm. The MRI measured it as 7 cm. Six weeks later the MO measured it at 9 cm. This is a freaking huge tumor to me.

I’m 68 years old. I’m like every other person, I have reasons to want to hang around for awhile.

Is anyone else concerned that ILC doesn’t react like IDC

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH)
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Oct 24, 2019 08:17PM trinigirl50 wrote:

Hi Mac5.

Curious. Why isn't your second ILC considered a second primary cancer rather than metastatic or a reoccurrence?

Either way you might be interested in the following study re Oncotype and ILC.

https://www.nature.com/articles/s41523-019-0113-y

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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Oct 27, 2019 09:03PM jessie123 wrote:

Mac5 -- yes, that is my new worry. Didn't think much about it when I was going through treatment, but now I'm doing more general reading about ILC and it doesn't seem like it's at all like IDC.

One good thought --- I have 3 friends who had ILC -- two are almost at the 5 year mark and the other had ILC 25 years ago and never took the pills as they weren't available then. She's still fine. She had a single mastectomy.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Oct 29, 2019 10:10AM mac5 wrote:

Thank you Trinigirl.

My first BC was DCIS and IDC. I had chemo and MX.

My second BC was ILC in the remaining breast.

The Oncotype Testing has been done, but the only results I have is that the Recurrence Score is 18

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH)
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Oct 29, 2019 10:18AM mac5 wrote:

Thanks jessie123. I’ll take encouragement anywhere it comes from! Happy

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH)
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Nov 13, 2019 02:31PM IllinoisNancy wrote:

Hi Nash! How are you doing? So sorry to hear it went to your brain. I'm fighting the spread of ILC also. Mine has spread to my skin so I'm on I'brance and Femara. I also have Neuroendocrine cancer in my stomach and liver so treating that too. May I ask how they found it in your brain? Were you having headaches? I often think of you and our long journey through breast cancer. Lets keep kicking its butt and living our lives to the fullest:)

Take care,

Nancy


Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Nov 13, 2019 02:35PM - edited Nov 13, 2019 02:36PM by IllinoisNancy

This Post was deleted by IllinoisNancy.
Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Nov 13, 2019 07:17PM wallycat wrote:

Nancy!! *waving wildly* I think of you often. Love seeing you post and doing well.

Everything I read when I was first dx was that ILC, if it recurs, does so years later....so is that better? or worse?

My onco score (see my tag line) was 20 and my (fired) onco was shocked it was that high. I'm finishing year 12. I opted out of chemo and sometimes wonder if that was wise. I've asked my onco if I should restart anithormonals and she said nope. So I sit and wait. Dealing with DH's metastatic prostate cancer just brings up so much PTSD...I wish you ladies well and maybe we'll be here when the "cure" comes around.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Nov 21, 2019 01:32PM momand2kids wrote:

Hi all,

Great to see some of you from way back!!! I was dx in 2008 and ocotype was 26 or 27-- so I opted for chemo... also had lupron, letrozole and radiation. Seems like forever ago. Just had my bi-annual MRI last week- have not heard anything so I am taking that as good news!!!

In the intervening years I also had a low level thyroid cancer and a low level melanoma. I am feeling great- working full-time as always, bringing up these kids-- just doing it every day.... I do think occaisionally about the fact that ILC can recur years later- but I am not sure there is anything I can do about that except for be as healthy as I can be. I wish good health for all of us for a long long time.


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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