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Topic: ILC stage 3 and 10 year survival

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

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Posted on: Apr 12, 2016 10:59PM

Posted on: Apr 12, 2016 10:59PM

gracejoy wrote:

I am wondering anyone with ILC stage 3 diagnosis and made it to 10 year without any recurrence.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy; Mastectomy (Right) Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole breast: Breast, Lymph nodes, Chest wall
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Jun 28, 2017 08:56PM - edited Jun 29, 2017 08:54PM by gracejoy


Impact of the 21-gene recurrence score on outcome in patients with invasive lobular carcinoma of the breast.

Kizy S1, Huang JL1, Marmor S1, Tuttle TM1, Hui JYC2.


This above article is very encouraging for ILC patients as it indicates that 5 year survival is 99% for low and intermediate and 96% for high scored patients, based on 21 gene test done on about 7000 patients (which is a study on a large number of ILC patients, stages I to III).

Knowing this information, (ILC patients) we should all live our lives as if we don't have BC and be happy.


Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy; Mastectomy (Right) Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole breast: Breast, Lymph nodes, Chest wall
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Jun 28, 2017 11:37PM optimist52 wrote:

Gracejoy, this certainly sounds very encouraging though the figures seem a little too high compared with other studies. However it's great to see this.

Second diagnosis PILC - Oncotype 22, isolated tumour cells in 2 nodes Dx 10/2003, ILC, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 10/23/2003 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 1/2/2004 3DCRT: Breast Hormonal Therapy 3/3/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/23/2015, ILC, Left, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 7/6/2015 Lymph node removal; Mastectomy; Mastectomy (Left) Hormonal Therapy 8/13/2015 Femara (letrozole)
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Aug 27, 2017 05:59PM nkb wrote:

Mammograms and Ultrasounds never showed any breast cancer for me, even with a large palpable mass-surgeons and radiologists thought it was a cyst. Luckily I had a biopsy anyway and it was at first read at IDC and then changed to ILC. I then had bilateral breast MRI with contrast and all the masses did not even show up. Long story short- I had extensive ILC in both breasts and multiple positive nodes. ILC IIIC in both breasts. It's a sneaky cancer.

I did make it about 5 years before extensive bone and bone marrow mets.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/4/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine) Targeted Therapy 9/13/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Sep 12, 2017 01:00PM hlya wrote:

So encouraging! Thanks for the pos

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Feb 7, 2018 05:06PM Janila03 wrote:

Hi everyone,

This thread is encouraging indeed. I have never come across anything as unpredictable as breast cancer. I'm 9 days post op (feeling great by the way) was told after surgery that there was no node involvement. Went for my check-up yesterday to get my drains removed and learned I have ITC in 2/nodes, one node having only has 1 cell, 1!!!. This was very discouraging as I was told after surgery that my nodes were A-ok. Now I have another 3 weeks of waiting for results. Chemo scares me more than losing my breasts did.

Dx 12/5/2017, LCIS/ILC, Both breasts, 1cm, Stage IB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 1/28/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Feb 7, 2018 07:05PM moderators wrote:

Hi Janila03-

We want to welcome you to BCO! You're so very right, this is one unpredictable journey. We certainly understand your fears about chemo, but it may help to spend some time reading through our chemo forum to gain some perspective about how other members have dealt with this stage of their treatment: https://community.breastcancer.org/forum/69

We hope the next three weeks fly by, and you get the answers you need to move forward with whatever comes next for you. Please keep us posted!

The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Feb 24, 2018 02:04PM lpk29 wrote:

I also had a BMX, my choice and the path came back LCIS in the non cancer boob. Of course none of this was picked up on mammo, US or MRI. I’m very glad I did it!!

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Apr 6, 2018 01:50PM - edited Apr 28, 2018 10:50AM by mmbNaplesFL

I'm just going to jump in with my thoughts as I am less than one year from BMX, radiation. I had the chemo before surgery. My radiation notes don't show up on my profile for some reason.

I'm wondering if the recurrence has more to do with nodes than Stage. I had ALL Nodes on th right side removed as I had 6/7 affected. my surgeon told me that recurrence is lower for stage III of ILC than IDC. I think that somewhere someone should be keeping a giant log (as in excel sheet) with all the stats to then tell us what is really going on in the BC world.

Dx 1/13/2017, ILC, Right, 6cm+, Stage IIIB, Grade 1, 5/39 nodes, ER+/PR+, HER2- Chemotherapy 1/31/2017 AC + T (Taxol) Surgery 7/5/2017 Mastectomy: Left, Right Hormonal Therapy 10/12/2017 Femara (letrozole)
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Apr 8, 2018 03:13AM Momine wrote:

lpk29, exactly the same for me. I had to switch surgeons to get a BMX, first guy refused. I am glad I did.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Apr 8, 2018 10:45AM - edited Apr 8, 2018 11:17AM by gracejoy

  1. Hı MmbNaplesF
  2. My MO says for reccurance it is not size of tumor (which includes staging and node involvement )that is important but it is the Biology of the tumour that determines the reccurance. He says those statistics are way too old. It no longer counts. I can see that your grade ıs 1 whıch ıs low. It shows that your tumour ıs not aggressive kınd. ILC ıs generally low grade as compare to IDC therefore reccurance will be lower.You have done everytıng you can just relax now and let go. Best
Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy; Mastectomy (Right) Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole breast: Breast, Lymph nodes, Chest wall

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