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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: What's your ILC story?

Topic: What's your ILC story?

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

Posted on: Jul 6, 2007 07:49AM - edited Dec 7, 2008 09:49AM by Lynn12

Lynn12 wrote:

When I was diagnosed, I came to this board and read the 15 pages of messages from other women with ILC. It was such a huge help for me. That thread is gone so I'm starting this thread so we can all post our stories.

I went to the OB/GYN in Aug. 06 and told him my right breast appeared to have gotten smaller in the past year. He checked for lumps but didn't find anything. Got my mammo in Oct. 06. They called me back for a 2nd because they noticed the right breast was smaller when comparing to my previous mammo in 2003. They still saw nothing but did an ultrasound where they did find enhancements. They did the core biopsy right then and 4 days later on 11/7/06, I was diagnosed with ILC. Surgeon sent me for a MRI which showed a small enhancement area in upper outer quadrant of right breast. Dr. wanted to do lumpectomy, I insisted on mastectomy.

treatment:
Right breast mastectomy on 12/4/06. Diagnosed with stage IIB. 7.5cm multi-focal, ER+/PR+ her2-. the cancer was found in all four quandrants of my breast. They say it's rare for breast cancer to cause your breast to shrink. There was never a lump, but felt more like a thickening.

6 rounds of TC (taxotere,cytoxan) from Jan - May 07.
30 rads from Jun - Jul 07.
Started tamoxifen May 07
Prophylatic lb mastectomy with bilateral DIEP - Dec. 10, 2007

Switched to Arimidex - Sept. 08

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Posts 331 - 349 (349 total)

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Apr 14, 2013 02:18PM gramwe wrote:

Pat,
Still sitting here twiddling my thumbs, watching the pollen fall. Hopefully after tomorrows visit to the BS I'll at least be able to drive again.
I'm a bit anxious about the oncotype test results. Waiting is so difficult, it would be nice if it would be like a TV show, where we get test results, treatments, and cures all in half an hour.
Wanda

Oncotype 16 Dx 1/29/2013, ILC, Stage II, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 3/12/2013, DCIS Surgery 3/12/2013 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 5/28/2013 Femara (letrozole)
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Mar 24, 2018 03:44AM NoteRed wrote:

Good morning or evening (I'm writing from Greece so we have time difference), to all of you,

I had my pathological report last Monday (the waiting was a nightmare). So my diagnosis is "classic ILC tumor mostly of it, with a little of IDC NOS. I'm comfused and I'm trying to finger out my prognosis. It was 1,5 cm and also grade 3 with 7 affected nodes of the 17. I'm a little terrified.

My surgeon and my oncologist were optimistic that is all gone and that is treatable....I'm trying hard to be optimistic and I'm starting chemo (paclitaxel- weekly dose) on Monday.

The other problem is my work. do you think I should take days off ??? will I be able to work? before all that I was thinking to change my job but now it all seems just diffucult...

Dx 2/2/2018, LCIS/ILC/IDC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel)
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Mar 24, 2018 11:37AM Momine wrote:

NoteRed, hey there! I am also in Greece :)

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Mar 24, 2018 01:42PM NoteRed wrote:

Hello there, I'm very happy to find someone from here. I'm in Athens. I also see you had your surgery in 2011, so it will be helpful to share some info...so glad

Dx 2/2/2018, LCIS/ILC/IDC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel)
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Mar 25, 2018 02:33AM Momine wrote:

NoteRed, anytime! Feel free to PM me. Are you Greek or an immigrant like me? Would be funny, although unlikely, if we had the same docs.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Mar 25, 2018 03:30AM NoteRed wrote:

just sent you pm Momine :

Dx 2/2/2018, LCIS/ILC/IDC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel)
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Jun 10, 2018 05:46PM SLL101984 wrote:

Hi everyone. It’s been a few months since Thai thread was active but I’d like to share my story anyways.

I was diagnosed on April 18 of this year with ILC at 33 years old. I went in for my routine gyno exam and my dr keept questioning this tiny spot in my left breast. Fast forward a couple weeks and I got the dreaded call, I could never feel anything abnormal! I thank my lucky stars my dr did. I had a BMX on may 21, opted for that route because I was very small breasted and the mri picked up on another spot in my breast and a small spot we couldn’t biopsy in my right. It was the right choice because the tumor ended up being larger than expected and a lumpectomy would have left me more disfigured than a mastectomy (seriously small boobs here!) I am 3 weeks out from surgery tomorrow, and am healing well. I meet with my MO for the first time Tuesday and I am extremely an anxious! I have had good news (we’ll as good as it can be when dealing with cancer ) up to now. Early stage, 2a, clear margins, 5 negative nodes, and negative genetic testing. I feel like chemo will be recommended just because of my young age, hoping oncotype comes back really l

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 11, 2018 05:18PM Trisha-Anne wrote:

SLL101984, welcome to the club no-one wants to join.

It's good you found it when you did. ILC is so slow growing, but very hard to find. It is good that you had clear margins, and it hadn't spread to your nodes.

I can't comment on chemo - here in Australia it's done a bit different to the US. If there's no node involvement, and it's relatively small then chemo isn't recommended.

Good luck with your MO, and please let us know how you go.

Trish

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 11, 2018 05:20PM Trisha-Anne wrote:

Oh - and forgot to add - ILC is very slow growing, and doesn't always respond to chemo like the others - IDC, IBC etc. Chemo works best on aggressive, fast growing cancers.
Trish

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 11, 2018 06:54PM SLL101984 wrote:

Trisha- I like that mentality in Australia! I feel like a lot of things in the US is go big or go home, and medical treatments follow that. Of course not all the time but I do think some dr’s o over treat, of course the they could under treat too. That’s the horrible thing when dealing with cancer, you never know for sure. But I think I will definitely keep that information in mind when making a decision.

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 12, 2018 08:53PM beach2beach wrote:

Hi all,

Routine mammo last year, neg. Sono showed to areas one in each breast. Biopsied left, benign findings but they recommended excising it out. (radial scar) Meanwhile radiologist thought right side was breast tissue. Fast forward to pre-op for excisional on left breast, my surgeon called an said her team questioned my right breast, where the radiologist did not note on the report the findings. They suggested biopsy day later got the dreaded call. First they told me a 7mm IDC. I opted for a double mastectomy. Didn't want to go through it later on knowing my luck. After surgery pathology showed it was ILC. Don't know how they did not see it at the biopsy.

@SLL...hang in there. Hope your OncoDX comes back nice and low. Let us know

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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Jun 12, 2018 09:22PM SLL101984 wrote:

Ladies....my oncotype score came back at 14!!!! I do not need chemo, the relief is unbelievable! I was so nervous for my appointment I have hives on my face and neck!!

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 12, 2018 10:15PM Meow13 wrote:

good news on oncodx. I too had very slow growing tumors, one ilc and one idc with lobular features. But my oncodx was high 34, I think it was skewed due to the high er percentage 95% and no progesterone receptors.

Nodes were clear, cancer was close to surface but no skin involved. Everywhere else in breast all normal tissue that being said I chose to do AI drugs no chemo. Year 7 no cancer.

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Jun 16, 2018 12:10AM robinblessed54 wrote:

Meow13, I love your username, I am a cat lover too. I had a very slow growing ILC with 95% ER and can't remember PR %. I found the lump and the doctor said it had been there quite a while. Fast forward to today where I saw my MO because I, once again, found a very small lump almost in the same location as the first one. :( My CA 15-3 was at 20 down from 26 six months ago. I don't think those cancer markers mean much as someone on another board mentioned. My MO says she doesn't think it is a lump. at my first DX my PCP said she thought it was the ridge of my breast tissue! We know how that turned out. So, I think I know my body better than she does. She is ordering an ultrasound and that is what is needed. I pray it isn't anything, but I need to know for sure. She did admit that ILC is very unpredictable and can return. We are in the minority ladies with only 15% of BC are ILC. They really don't know everything about it. But if it is a recurrence, I have gotten it early. I didn't have chemo or rads the first time around because I had no nodes involved. I had a BMX so I wouldn't have to worry, well, at least I gave it a fighting chance.

I also have had 6 basil cell skin cancers removed in the last 15 years or so. I have monoclonal gammopathy as well, which is the pre-curser to multiple myeloma, blood plasma cancer. Cancer- the gift that keeps on giving.

Blessings, Robin

Dx 9/2/2014, ILC, Left, 1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 9/25/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/15/2014 Arimidex (anastrozole) Hormonal Therapy 12/30/2014 Aromasin (exemestane) Surgery 3/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/14/2015 Femara (letrozole) Surgery 12/21/2016 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
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Jun 16, 2018 07:06AM NoteRed wrote:

Hello Meow My DX was ILC with a little IDC (mixed adenocarcinoma). but I also had 7 nodes involved so chemo was for sure. Hope everything turns ok for all of

Dx 2/2/2018, LCIS/ILC/IDC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel)
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Jun 16, 2018 07:39AM Catsme wrote:

Hi all,

My story starts with annual 3D mammo in November 2016. There was an irregularity, went the next day for US, next day MRI, and the following Monday biopsy, by Wednesday had my diagnosis. Neither I nor my BS could feel the lump, but as many of you point out ILC is sneaky that way.

I had a double MX and opted not to have reconstruction. No chemo or rads.

My family has been so amazing; and my entire medical team is the "cat's meow". I'm working with a wonderful councilor on my PTSD, fear of reoccurence. This BCO community is also a great part of my support team.

BTW I'm a cat lover too!

Dx 12/7/2016, ILC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 1/3/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 1/20/2017 Arimidex (anastrozole)
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Jun 16, 2018 10:36PM Meow13 wrote:

Robin, I hope the ultrasound determines it is b9. I had a scare same spot after an mx. It turned out to be fat necrosis. It was found on mri so they did an mri guided biopsy. The clip is still there and I see it on my mammograms. I asked my onco if I should have a bmx he said no. I was freightened when the MRI found a question on my DIEP side. I asked the radiologist if she saw anything on the right side the real breast. She said no and it looks textbook normal, no questionable spots at all. I was relieved.

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Jun 16, 2018 10:41PM Meow13 wrote:

Notered, you made it thru chemo good news for you. That first year is hard. As time goes by you will start to relax. Grade 3 tumors respond to chemo pretty well. I hate reading that hormone fed cancers can come back years later but I don't think the statistics are worth worrying about.

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Jun 16, 2018 10:51PM Meow13 wrote:

bump

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