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Topic: ILC Long Term Survivors

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

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Posted on: Dec 4, 2011 08:12AM

NancyNY wrote:

Does anybody know people, or are you someone who has survived ILC long term, (more than 5  to 10 years) without a recurrence?  Please post!

I was diagnosed in 2004, and think I am fine, but, as I see from the boards, you can never be 100% sure.

Thanks!

Nancy 

Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Posts 61 - 85 (85 total)

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Feb 1, 2020 02:10AM MikaMika wrote:

sweetgirl19,

Thanks for your post! Do you now the details about their treatment and stages?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Feb 1, 2020 02:17PM Sandiegohoneybee wrote:

hi. Did u do nerlynx? I’m Er and her2 positive. At crossroads.

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Feb 3, 2020 11:41PM karen1956 wrote:

Today I mark 14 years since I heard those dreaded words!!! For fun I did the math (14 x 365) and that equals 5110 days!!!

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Feb 4, 2020 01:27AM MikaMika wrote:

karen1956,

Congrats! I wish you to post here about your 44 year mark since that date. And for all of us I wish to read this post!

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Feb 4, 2020 09:00AM karen1956 wrote:

Mika - 44 years from Dx will have me past 100!!!! But thanks!!

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Feb 9, 2020 02:43AM - edited Feb 9, 2020 02:44AM by lauri

Fourteen years since I found the "thickening" in what used to be my left breast. At 75, many other things are falling apart but BC isn't one of my problems.

From the ashes of disaster grow the roses of success Dx 3/8/2006, ILC, 6cm+, Stage IIIB, Grade 2, 11/12 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Feb 9, 2020 08:29AM - edited Feb 9, 2020 08:30AM by Moag

Thank you so much lauri! Wish you continued good health Heart

Dx @41. Brca2+. Norway Dx 4/2018, LCIS/DCIS/ILC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Radiation Therapy Chemotherapy AC Hormonal Therapy Femara (letrozole) Surgery Prophylactic ovary removal Surgery Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left)
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Feb 13, 2020 08:33PM cathmg45 wrote:

Hi everyone,

I will mark 12 years since diagnosis when this summer rolls around. Wow. I couldn't have imagined being at this point back then, since I was devastated by the diagnosis and year or so of treatments. I didn't even want to hear from my onc back then about my prognosis for survival. But here we are. The years since 2008 have had SO many peak moments. I miss my onc appointment last year, then decided that I should see him. I had to ask my husband what the doctor's name was-I had actually forgotten, and it wasn't just chemo brain!! I did see him and we had a nice chat. I hope we all live long and well.

Catherine

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2-
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Feb 16, 2020 12:31PM MikaMika wrote:

cathmg45,

Congrats and thank you so much for posting here!

What was your treatment? Could you please share?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Mar 10, 2020 09:02PM cathmg45 wrote:

Thanks MikaMika! I had a bmx, followed by 4 rounds of chemo: taxotere and cytoxan. Then I had 2.5 years of Tamoxifen before I threw in the towel because of side effects. I had reconstruction with implants a year after bmx. So far so good.

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2-
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Mar 11, 2020 12:24AM MikaMika wrote:

cathmg45,

Thank you for your response!

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Apr 12, 2020 11:21AM wallycat wrote:

I just completed 13 years, starting on 14....I posted in the ILC section since that is what I had (as a cancerversary post).

I know how you ladies feel...never thought I'd be out this far. Sure, it can change in a heartbeat, but that's life, right?

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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Apr 12, 2020 01:09PM beach2beach wrote:

Congrats and a long, long time of cancerfree living!

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 12, 2020 03:58PM IAmElaine wrote:

I hit 16 years early last month. I had terrible stats when diagnosed but I'm still here and cancer free.

Happy Easter, ladies!

Diagnosed March 1, 2004 with stage 3C ILC, 7cm tumor with 11+ nodes
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Apr 13, 2020 10:33PM - edited Apr 13, 2020 10:34PM by HelloItsMe789

Congrats wallycat and IAmElaine!

Heart

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Apr 18, 2020 02:47PM kar123 wrote:

Such great news!!! Thank you so much for coming back and inspiring hope! 10 years for me in June!

Dx 6/2010, ILC, 6cm+, Stage IIIA, Grade 2, 2/7 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2010 AC + T (Taxol) Surgery 11/17/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 1/24/2011 Breast, Lymph nodes Hormonal Therapy 4/4/2011 Arimidex (anastrozole) Hormonal Therapy 5/1/2013 Femara (letrozole)
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May 21, 2020 08:43PM skv0123 wrote:

thank you all so much for adding to this thread. I am 1 year from diagnosis, 10 mths our from a Bilateral Mastectomy. On tamoxifen & Lupron. Was ER/PR +, HER -, 2.5cm, 0 nodes. I only get on the board every few month now, but it has always been helpful to me.

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Aug 8, 2020 11:57AM antonia1 wrote:

It has been 10 years since I saw in the bathroom mirror my poor flattened and misshapen left breast and next month will mark the 10thanniversary of the official diagnosis. I’m fine, as far as I know, but still keeping my fingers crossed.

Dx 9/15/2010, ILC, Left, 4cm, Stage IIIA, Grade 3, 4/16 nodes, ER+/PR+, HER2+
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Aug 13, 2020 12:14PM Longtail50 wrote:

Congratulations antonia1, kar123, IAmElaine and others!! Very inspiring and thank you so much for sharing! Very happy for all of you.

Dx 8/2019, ILC, Left, 6cm+, Stage IIIA, Grade 3, 0/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 9/26/2019 AC + T (Taxol) Surgery 2/21/2020 Lymph node removal; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 5/18/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 5/27/2020 Zoladex (goserelin) Hormonal Therapy 7/3/2020 Aromasin (exemestane)
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Sep 2, 2020 04:50PM bc101 wrote:

Hello!

I'm 7 years out and am feeling great. In the early years, I used to spend a lot of time on this site and most of it was wasted by worrying about one thing or another, but now I rarely venture here. Nowadays I worry more about Covid than cancer. What a year, huh? It's so inspiring to hear from the long term ILC survivors! I'm enjoying my life as much as I can and hoping for many more cancer-free years to come!


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Sep 5, 2020 01:34PM - edited Sep 5, 2020 01:35PM by LillyIsHere

BC101, what stage were you? Did you have ILC in your nodes?

Wishing you many other ILC free years to come.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Sep 5, 2020 04:21PM OGT42 wrote:

I was diagnosed with ILC Stage 3A in May 2007. I was convinced that I was unlikely to survive and yet here I am, 13 years later, and healthy so far

ILC stage 3A, Dx 2007 May. Bilateral mastectomy, reconstruction (delayed, chemotherapy, radiation, Femara/letrozole x 10 years. Lymph nodes 6/17
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Sep 5, 2020 11:54PM MikaMika wrote:

Thank you so much ladies for sharing your stories here! 💚 I wish you (and all of us) many decades of happiness and good health!
Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Oct 10, 2020 11:16AM BeingPresent100 wrote:

Curious if there are any long term ILC survivors who had lymph node involvement and were diagnosed in their 40s? Anyone on here past 15 or 20 years? Thanks!

Dx ILC, Right, 4cm, Stage IIA, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Oct 10, 2020 06:43PM BeingPresent100 wrote:

Thank you for this post! I screen shot all of these survivor stories....inspiring.

Dx ILC, Right, 4cm, Stage IIA, Grade 3, 1/10 nodes, ER+/PR+, HER2-

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