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Topic: ILC Long Term Survivors

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

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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Dec 5, 2011 06:22PM Gitane wrote:

Hi Nancy,  Great to hear from you again!  I'm fine, too (as far as I know....) .  Hugs,  G.

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Dec 5, 2011 07:06PM fredntan wrote:

I have a friend in SC. same dx. I think she's like 8 years out. I found her from a friend of mine. she's talked me off the edge a few times. love her southern accent. she said docs didn't know whaat to do with her. but she's fine

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Dec 5, 2011 08:34PM snicklefritz wrote:

Hi there -
Whenever I see these posts, I always feel I need to respond , even if only to give someone hope or encouragement. Eight years ago I was dx with pleomorphic lobular, aggressive with positive lymph nodes. I was depressed and down and it was posts from others that gave hope. I sincerely hope I can do the same. love to all. MJ

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Dec 5, 2011 09:50PM karen1956 wrote:

Nancy....I'm 5 years 10 months since Dx....I last saw my onc in Aug 2011 and was NED...as far as I know I'm still dancing with NED!!!!  May we all grow old together!!!!  Karen

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Dec 6, 2011 10:23PM Trish03 wrote:

September marked 8 years for me. As you can see in my signature, I was Stage III. So far, I'm doing great! I hope for many more healthy years for all of us.

 Hugs, Trish 

Dx 09/03, ILC, Stage IIIa, 7 cm, 4/18+ nodes, ER+/PR+, Her2-, 11/05 BL DIEP, 5/13 Stage IV, dx mets to liver Dx 9/15/2003, ILC, 6cm+, Stage IIIA, 4/18 nodes, ER+/PR+, HER2- Surgery 9/30/2003 Mastectomy: Right Chemotherapy 10/14/2003 AC + T (Taxol) Hormonal Therapy 4/14/2004 Arimidex (anastrozole) Radiation Therapy 4/14/2004 Breast Surgery 11/16/2005 Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 5/27/2013, ILC, 6cm+, Stage IV, ER+/PR+, HER2+ Targeted Therapy 6/23/2013 Herceptin (trastuzumab) Targeted Therapy 6/23/2013 Perjeta (pertuzumab) Chemotherapy 6/23/2013 Taxotere (docetaxel)
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Dec 6, 2011 10:28PM awb wrote:

Nancy----my mom had ILC many years ago---lumpectomy, radiation, tamoxifen----she is now a survivor of 25 years without a recurrence and doing well at age 82!

anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Dec 8, 2011 11:42PM kim2005 wrote:

Hi Nancy,

 There's probably many more than we know!  Tomorrow I celebrate my SIX years since dx and I feel fantastic....I'm not naive enough to think it could never happen again but i'm not sared enough to think...'Hey, i'm going to go out and live my life!"  Do what you can and then enjoy what you have.  I'm healthy, make good choices,have a great family and I pray for the best...I think it's about all we can do.  Here is to you fantastic health and optimisism Nancy!!

Dx 12/9/2005, ILC, 2cm, Stage II, 0/5 nodes, ER+/PR+, HER2-
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Dec 9, 2011 03:03PM Kathleen26 wrote:

My sister celebrated her 10th anniversary from an ILC diagnosis about three months ago.   She had a double MX and chemo.   She's had no problems since then.  

BRCA2+ Surgery 4/9/1990 Lumpectomy: Left; Prophylactic ovary removal Radiation Therapy 5/9/1990 Whole-breast: Breast Surgery 1/4/1996 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Dx 4/6/2010, IDC, Right, <1cm, Stage IIIC, Grade 2, 8/16 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 5/19/2010 AC + T (Taxol) Surgery 9/1/2010 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Radiation Therapy 11/7/2010 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/14/2010 Arimidex (anastrozole) Hormonal Therapy 5/14/2012 Aromasin (exemestane) Hormonal Therapy 9/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 9, 2011 03:43PM Ellie1959 wrote:

I will celebrate (God willing and the creek don't rise) 6 years on Dec. 27th! Here's to many more anniversaries for all of us!!!

Dx 12/27/2005, ILC, 5cm, Stage IIIA, Grade 3, 2/12 nodes, ER+, HER2-
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Dec 9, 2011 07:22PM Tenmom wrote:

My great aunt . She is a 26 year survivor :)

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Dec 9, 2011 10:23PM Frapp wrote:

Did all of you have mx? Since I was stage 4 at get go, was discouraged from mx. This is my 2 yr anniversary and yesterday's pet shows three new cancers in breast and new activity in abdominal and pelvic lymph nodes.

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2- Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2- Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2- Surgery 11/1/2012 Mastectomy: Left, Right Targeted Therapy 12/19/2012 Afinitor (everolimus)
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Dec 9, 2011 10:40PM - edited Dec 9, 2011 10:41PM by dreaming

I am a 20 year survivor, about 12 years ago I had a chest wall biopsy for microcalcifications, there was a follow up an now they are gone.

I am very attentive to any changes, and see my surgeon an oncologist once a year. I had 2 types of breast cancer, ILC and D.C.

After the mastectomy a second diferent cancer was found: Invasive Ductal Carcinoma, C.F.M.: Dx 7/7/1991, ILC, Right, 1cm, Stage IA, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Dec 10, 2011 04:47PM Gitane wrote:

Hi Frapp,  I had bilateral mastectomy.  I don't know how common that is.  My oncologist said I absolutely needed the mastectomy on the left, I chose the one on the right.  I read this article out of the SABCS, from Vanderbilt University, saying mastectomy at Stage IV might be a good idea.  

http://www.medpagetoday.com/MeetingCoverage/SABCS/30120

I am so sorry you are getting news about progression.  Sending all my hugs and support.  G. 

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Jan 6, 2012 04:27AM ductal wrote:

frapp, so sorry about the pet scan.  Hope you are not in pain and also hope many people love you through this.  Maybe they can thump this cancer yet.  Don't give up until you choose.  Pamper yourself.

Dx 6/2009, ILC, 6cm+, Stage IV, 30/31 nodes, mets, ER+/PR+, HER2-
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Jan 6, 2012 05:33AM Merilee wrote:

I like this thread, good job ladies!

breastcancerbeast.blogspot.com & downsyduderescueranch.blogspot... Dx 4/4/2011, ILC, 1cm, Stage I, 0/9 nodes, ER+/PR+, HER2-
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Dec 15, 2012 08:25PM MMSS wrote:

I have a close friend who had MX and reconstruction for a large ILC (she doesn't remember the size but says it was in all 4 quadrants of her breast and she has big ones) and had 22/33 positive nodes. She refused chemo and radiation much against the advice of her doctors and remained disease free for 15 years. She then had a recurrance in the scar that they excised but couldn't get clean margins so they put her on Arimidex which she tolerates with no SE and she remains fine 3 years later. The Doctor just shakes his head and tells her that she should have been dead years ago but to keep doing whatever it is that she is doing becaause it certainly is working.

Dx 8/24/2012, ILC, 6cm+, Stage IIIB, Grade 1, 1/1 nodes, ER+/PR+, HER2- Hormonal Therapy 8/29/2012 Aromasin (exemestane) Surgery 1/21/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/3/2013 Breast, Lymph nodes
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Dec 15, 2012 08:27PM MMSS wrote:

I have a close friend who had MX and reconstruction for a large ILC (she doesn't remember the size but says it was in all 4 quadrants of her breast and she has big ones) and had 22/33 positive nodes. She refused chemo and radiation much against the advice of her doctors and remained disease free for 15 years. She then had a recurrance in the scar that they excised but couldn't get clean margins so they put her on Arimidex which she tolerates with no SE and she remains fine 3 years later. The Doctor just shakes his head and tells her that she should have been dead years ago but to keep doing whatever it is that she is doing becaause it certainly is working.

Dx 8/24/2012, ILC, 6cm+, Stage IIIB, Grade 1, 1/1 nodes, ER+/PR+, HER2- Hormonal Therapy 8/29/2012 Aromasin (exemestane) Surgery 1/21/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/3/2013 Breast, Lymph nodes
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Dec 20, 2012 08:32PM NoMoreMeh wrote:

I am 8 years and 4 months out from a stage lllb, ILC diagnosis.

Albert Einstein: "Never do anything against conscience even if the state demands it." Dx 8/12/2004, ILC, 6cm+, Stage IIIB, Grade 1, 8/26 nodes, ER+/PR+, HER2-
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Dec 26, 2012 01:09PM GrammyNancy wrote:

It will be 6 years for me in Feb!!!

Dx 2/5/2007, ILC, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Dec 27, 2012 11:31AM jenni__ca wrote:

eight and a half years here too

doing well ... so far NED ...

ILC, multifocal, 7+++cm, ER+, PR-, HER2-, 1/4 nodes, stage 3A ...15 years !!!!!! and counting....
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Dec 28, 2012 01:21PM jojo68 wrote:

Hi there!  Did your close friend take Tamoxifen?

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
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Jan 1, 2013 09:05AM Lily55 wrote:

MMSS - wow you give me hope, I was ILC stage 3 in nodes too, I refused chemo, but forced to have surgery (very painful vbreast prior to surgery so no option really) accepted hormone therapy, and rads which I regret as it has caused me a lot of problems........in constant pain - distress as a result

I am being told I am high risk of recurrence all the time and 80% chance of getting it in remaining breast

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jan 1, 2013 09:20AM mary625 wrote:

It gives me hope too. I was Stage IIIC AFTER chemo. I was stunned and shocked to say the least. Onc said I would have had 25 nodes positive rather than 10 had I not had chemo. I do know that chemo did some good because I could feel the shrinking of the tumor itself and the largest lymph node, and it was confirmed by the doctors.

I'm almost one year out from final chemo and beginning of February I'll be one year out from surgery. All good!

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Chemotherapy 9/25/2011 AC + T (Taxol) Surgery 2/5/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Hormonal Therapy 3/11/2012 Femara (letrozole) Radiation Therapy 3/12/2012 Surgery 9/23/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 1, 2013 06:22PM wallycat wrote:

It will be 6 years in April, but frankly, my gut told me I had had it longer than that....

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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Jan 1, 2013 06:51PM LindaLou53 wrote:

I am now 7 years NED after a Stage IIIC ILC dx with 23/23 positive nodes. My doctors believe my ILC was likely already present when I had my first BC dx (IDC) in the other breast 12.5 years ago. Unfortunately, my ILC was never detected by any of the mammograms I had been getting every year from the age of 39. Only after the tumor was large enough to be felt, was it found on physical exam and that was only minutes after a mammogram which showed nothing. MRI was the only scan that finally showed my tumor and positive nodes. Fortunately, I am still doing well following treatments and am looking forward to every day I am given!

Life is not measured by how many breaths we take...but by the moments that take our breath away! ...I am a 14/9 yr survivor of 2 Primary BCs, 23/23 Positive Nodes (Zometa x 5 years) Started Paloma-3 Clinical Trial 4-14-14 Dx 7/14/2000, IDC, 1cm, Stage IIA, Grade 1, 2/7 nodes, ER+/PR+, HER2- Surgery 8/11/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/30/2000 AC + T (Taxol) Radiation Therapy 2/26/2001 Breast, Lymph nodes Hormonal Therapy 5/10/2001 Dx 11/21/2005, ILC, 5cm, Stage IIIC, Grade 1, 23/23 nodes, ER+/PR-, HER2- Surgery 12/5/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 12/23/2005 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 4/7/2006 Aromasin (exemestane) Radiation Therapy 4/7/2006 Breast, Lymph nodes Dx 3/21/2014, ILC, Stage IV, mets, ER+/PR-, HER2- Hormonal Therapy 4/14/2014 Faslodex (fulvestrant)
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Jan 2, 2013 02:52AM Lily55 wrote:

Lindalou - brilliant news, thank you!!  Keep on trucking....

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jan 3, 2013 09:24PM MMSS wrote:

Joellelee, she didn't take any hormone therapy until after the recurrence when they put her on the arimidex.

Dx 8/24/2012, ILC, 6cm+, Stage IIIB, Grade 1, 1/1 nodes, ER+/PR+, HER2- Hormonal Therapy 8/29/2012 Aromasin (exemestane) Surgery 1/21/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/3/2013 Breast, Lymph nodes
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Jan 21, 2013 12:49AM jillanne0306 wrote:

10 years for me. Keep taking my little Femara but hate side effects. Was only 46 and have done alot of living the last 10 years. Just became a first time grandma last year.

Dx 11/11/2002, ILC, 3cm, Stage IIIA, Grade 3, 3/10 nodes, ER+/PR+, HER2- Surgery 12/3/2002 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 1/10/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/20/2003 Breast, Lymph nodes Hormonal Therapy 8/10/2003 Surgery 12/27/2003 Mastectomy: Right; Prophylactic mastectomy: Right Surgery 4/10/2004 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/20/2005 Prophylactic ovary removal Hormonal Therapy 8/17/2005 Femara (letrozole)
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Jan 21, 2013 11:20PM lemon68 wrote:

Nancy thank you for starting this topic. I have been given some much needed hope after recently being DX. I do notice the majority got either a MX or BMX. Asked BS about that and he said not necessary. My tumor was 2 mm but Path reports shows LCIS and DCIS and now I am worried about the left which hasnt been looked at. I have a SNB on Thursday so will know more after that, he already said radiation. Concerned if this decides to return I will have done to much damage for reconstruction.

You are all an inspiration to me, seems most are DC. I am cheering each of you on, thanks for giving me hope. xo

Don't compromise yourself. You are all you've got. There is no yesterday, no tomorrow, it's all the same .... day. Surgery 12/30/2012 Lumpectomy: Right Dx 1/4/2013, ILC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/23/2013 Lymph node removal: Right, Sentinel Radiation Therapy 3/17/2013 Breast Hormonal Therapy 5/7/2013 Surgery 9/18/2013 Prophylactic ovary removal Surgery 5/4/2014 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 8/25/2014 Reconstruction (left)
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Jan 22, 2013 04:16AM Momine wrote:

Lemon, your tumor is tiny, mine was huge and thus the mastectomy. Because of the advanced stage I then had radiation as well on top of a BMX. 

Do get a second opinion, but it sounds like your surgeon is sensible.

In my case, I was told to delay recon for two years. Now that I have gotten used to being flat, I doubt I will ever bother.

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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