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Topic: ILC & no clear margins

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

Posted on: Jul 13, 2007 07:38AM

jayhawk wrote:

Hello all,

This is my first post, I was diagnosed 6/14/07 with ILC (grade 1), ER+/PR+, HER -, and underwent lumpectomy 7/10/07 with SNB. Mine was actually found on mammogram, everyone is pretty impressed with the radiologist. Nodes came back neg but surgeon did not get clear margins on the lumpectomy. I understand this is not too uncommon for ILC - the original measurement from US was .6 cm x .5 cm, now the surgeon says he took out 1 cm of tumor. Is there a good chance the size might be quite a bit larger once it is all said and done? Is this increasing my chance they will recommend chemo? I had an MRI which didn't show any further sites. I'm pretty disappointed about having more surgery, any advice would be appreciated!
ILC, 1.2 cm, grade 1, stage 1. Lumpectomy 7/10/07, re-excision 8/2, rads started 9/20/07.
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Jul 13, 2007 07:45AM sschmidt wrote:

I had clear margins at 1cm and they were not going ot take more during the SNB but I asked them to take more and expand the lumpectomy. There were other IDCs around the lump they took out previously. It appears that there are clusters. I was glad I had them take more.

Dx 2/10/2006, IDC, <1cm, Stage IIA, Grade 2, 2/16 nodes, ER+/PR+, HER2-
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Jul 13, 2007 07:58AM figsgirls wrote:

Before my lumpectomy, my surgeon told me it was not uncommon to have to do additional surgery to achieve clean margins.
I feel your pain- it's frustrating to think you'll have to have more surgery! But of course the ultimate goal is to GET RID OF THE CANCER!!

Not sure how it affects your chances of getting chemo. I think your age might be a factor, and your node status definitely is.

Donna
Diag. 4/11/07 ILC 4.3cm 1/14 nodes ER+/PR+ Her2-. Lump., bilat.mast. 4AC 12 Taxol, Tamox. Implant recon.
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Jul 13, 2007 07:59AM marshakb wrote:

Jayhawk, so sorry to see you here, but welcome to the lobular thread. I was told I would need chemo from the very beginning because of the tumor size, 5 cm. Lobular often is bigger than it shows up on mamm/ultrasound/MRI simply because it grows in a single layer instead of a round lump. If you get clean margins and the size stays under 3 cm then you are probably looking at radiation only. BEST OF ALL congrats on the nodes being negative. That is a sure way to be given chemo! Let us know and also know you will find a lot of love and support here. Hugs to you, Marsha

I'm not dead yet! Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Jul 13, 2007 09:53AM jayhawk wrote:

Thanks for all of your comments! What will probably happen if they don't get clear margins the second time? (I know I shouldn't be worrying about "what if"!) Do they start suggesting mastectomy at that point? It seems alot of women with ILC end up with mastectomies. I'm so glad I found this board for all the info and support.
Donna
ILC, 1.2 cm, grade 1, stage 1. Lumpectomy 7/10/07, re-excision 8/2, rads started 9/20/07.
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Jul 13, 2007 11:16AM marshakb wrote:

Hon, they HAVE to get clear margins. And yes, depending on the size of your tumor and the size of your breast they MAY recommend mastectomy. I'm glad you found us too! Marsha

I'm not dead yet! Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Jul 18, 2007 06:08AM LauraGTO wrote:

Donna -
Marsha is right...but let us know what happens. In the meantime, hang in there. You are very fortunate that your nodes were neg. and it's great that the tumor wasn't larger. Take care.
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Jul 27, 2007 02:41AM kate24 wrote:

Hi Donna, try not to freak in advance. I know (believe me ) its hard. But my surgeon went in 3 times b/f achieving clear margins. The worst part is the anxiety of the unknown. But be grateful that the problem was found now all thats left is to get rid of it.
Hugs and prayers.
Kate
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Jul 27, 2007 01:26PM jayhawk wrote:

I saw the surgeon yesterday for my post-op appt and scheduled the re-excision for 8/2 - I'm glad to be getting it done quickly. He feels pretty certain he can get clean margins this time, especially since only one area wasn't clean. Keep your fingers crossed for me!
Donna
ILC, 1.2 cm, grade 1, stage 1. Lumpectomy 7/10/07, re-excision 8/2, rads started 9/20/07.
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Jul 29, 2007 11:20AM LauraGTO wrote:

Donna -
Fingers, toes, are crossed for you...Good luck on Thursday! Keep us posted...we're here for you. Keep in mind...rarely is a surgeon NOT able to get clean margins...I hope you can rest assured that he probably will! Good luck. In the meantime try to relax.
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Aug 6, 2007 10:44AM jayhawk wrote:

Hello all,

I had my re-excision on Thursday and got the report today of clear margins!! I am so excited, I feel like a weight is lifted off me. The overall size ended up bein 1.2 cm so still pretty small. I met with the oncologist for the first time today and she feels I am right on the fence as far as needing chemo or not. I will have the Oncotype test to see if that can help with my decision. Any thoughts from ladies out there about this? Obviously, in my favor is being stage and grade 1, ER/PR+, HER2-; on the con side is my age (47) and the tumor being over 1 cm. Plus, with it being ILC, I don't think I'll ever feel totally confident it's all been identified and taken out. If there would be significant benefits from chemo I'll do it but I really don't want to go through it if it won't be helpful. Help!
ILC, 1.2 cm, grade 1, stage 1. Lumpectomy 7/10/07, re-excision 8/2, rads started 9/20/07.
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Aug 6, 2007 11:30AM wallycat wrote:

MD Anderson did a huge study that showed lobular cancer is less responsive to chemo than to hormone treatment.
My onco score was much higher than the docs envisioned it would be, but after all was said and done, on CMF, my benefit would only have been 2%--onco said risk of chemo is more than benefit.
I had 1.8cm tumor...no nodes...but I did have bilateral mastectomy which gives me more peace of mind.
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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Aug 6, 2007 11:40AM nash wrote:

Congrats on the clean margins! The Oncotype is a good idea--you're right that you're on the fence. I think with negative nodes and a grade 1 tumor that hormones might possibly be the way to go. In addition to ILC not responding as well to chemo, like wallycat said, low grade tumors don't respond as well to chemo as high grade tumors do, so that may be another consideration.

I just saw a second opinion oncologist, and he really surprised me by saying that if my oncotype comes back very, very low, he'd say definitely no chemo for me. I'm 39 years old with a 2.7 cm pleomorphic ILC tumor, grade 2, no nodes.
Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, 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 IV, metastasized to other, 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 IV, metastasized to other, 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+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 6, 2007 02:19PM scarednancy wrote:

HI,
I had ILC, pleomorphic,grade 2, no nodes, ER++, PR-. I had a lumpectomy, radiation and Tamoxifen. My oncotypeDX was a 9 so the docs said NO CHEMO. I was thrilled and hope I kicked cancer in the butt forever. Good luck with your treatments.
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Aug 6, 2007 03:18PM awb wrote:

jayhawk---congrats on the clean margins! Just to let you know not everyone with ILC ends up with a mastectomy----my mom had ILC (stage one) and had lumpectomy, rads, and tamoxifen and is now a survivor of over twenty years without a recurrence!

"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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Aug 8, 2007 06:05AM LauraGTO wrote:

Donna -
Yeah...you really are on the fence with this! This is a tough one...although if I were in your shoes...I would probably have bilat masts and skip chemo. Good luck with your decision...you just have to do what your instincts dictate. Best wishes...
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-

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