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Topic: Invasive Pleomorphic Lobular Carcinoma

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Dec 10, 2013 09:11AM

pipers_dream wrote:

It's the word pleomorphic that apparently makes me unique, lol. 10% of BC are ILC and less than 5% of those are IPLC and I"ve got some interesting things going on in there. The path report says that I have highly pleomorphic nuclei with a nuclear grade score of 3, a tubule score of 3, and a mitotic index score of 1, for a total of 7. A typical ILC would have a score of 1. Well I always did say I've got more interesting problems than anyone else! Anyone else? (BTW, docs did not and will not explain this to me, and believe me I have asked.)

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jun 26, 2018 11:09AM RobinJ3024 wrote:

Does anyone have any more current information about Invasive Pleomorphic Lobular Carcinoma?

My path report from the lumpectomy was just released and showed the above. Most of the information that pops up on Dr. Google is somewhat older and therefore, I'm not sure it's reliable. My doctor is on vacation this week.

Dx 4/20/2018, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/26/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 2, 2018 11:35AM Almer wrote:

Hi Robin!

Ihave Stage 3C Grade 3 (pleomorphic) breast cancer and finished treatment a few months ago. I’m now on Arimidex for 7 years. I’m also an RN so have taken real interest in my pathology reports and what they meant.

What questions do you have?

Dx 6/28/2017, ILC, Left, 2cm, Stage IIIC, Grade 3, 16/23 nodes, ER+/PR+, HER2- Surgery 6/28/2017 Lymph node removal: Sentinel Surgery 6/28/2017 Lumpectomy: Left Surgery 8/7/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Chemotherapy 8/31/2017 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 3, 2018 02:49AM RobinJ3024 wrote:

I don't want to be alarmed before I need to be -- but from reading old studies I found online, this appears to be rare and very aggressive cancer. Is that true? Or did I read more into the studies than I should have?

Looking at my path report, there was no lymphovascular invasion, all the margins were clear, lymph nodes negative, lesion was .9 mm - so I'm thinking we caught it early enough that I shouldn't be overly alarmed. Just trying to keep it all in perspective.

Almer - glad to hear you are doing well!


Dx 4/20/2018, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/26/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 6, 2018 12:46PM gwydiana wrote:

Hiya!


I also was just diagnosed with Pleomorphic Invasive Lobular Carcinoma. It's scarey! I found an amazing local doctor who specializes in it named John Link. He has several clinics named BreastLink.

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/24/2018 Femara (letrozole) Surgery 6/13/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (right): Nipple reconstruction
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Jul 7, 2018 03:19AM nash wrote:

I have had PILC 3x since 2007, and now have just been diagnosed with brain mets. I was always told PILC behaves like a grade 3 IDC

Gwydiana, I’m so glad I saw your post about Dr Link. I haven’t been able to find anyone in the San Diego area who specializes in PILC! I think my current onc has me on the right protocol, but now that I’m stage IV, it would be good to see a Dr with more in depth knowledge for a second opinion


Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, 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 IA, 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 IIIA, 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, Grade 3, ER+/PR+
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Jul 10, 2018 04:43AM RobinJ3024 wrote:

So, where can I get some additional information about this? Everything I find online is older research. I looked up Dr. Link, but I don't see any information about him specializing in PILC. So, I couldn't confirm that on the internet.

So, does anyone have any links they can post here, so I can educate myself better? I don't know if I should be more worried than I already am or not.


Dx 4/20/2018, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/26/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 12, 2018 07:55AM nash wrote:

http://www.pathologyoutlines.com/topic/breastmalignantlobularpleomorphic.html


Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, 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 IA, 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 IIIA, 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, Grade 3, ER+/PR+
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Jul 12, 2018 10:17PM RobinJ3024 wrote:

NASH - THANK YOU! Precisely what I've been looking and could not find.

My surgeon has seemed to think this is no big deal, but it's not his breast. I have an appt with the radiation oncologist next, and will share with him, and then of course, with my MO who I see for the first time in October.

I just want to make sure we get this taken care of this first time around.

Dx 4/20/2018, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/26/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 12, 2018 11:00PM nash wrote:

You’re welcome! Best of luck.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, 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 IA, 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 IIIA, 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, Grade 3, ER+/PR+
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Aug 6, 2018 06:19AM gwydiana wrote:

Robin,

Dr. Link wrote an amazing book. https://smile.amazon.com/Breast-Cancer-Survival-Ma...=sr_1_1?ie=UTF8&qid=1533502097&sr=8-1&keywords=dr+john+link


He has multiple offices in Riverside and Orange County. I'm so very grateful to have found him. His company, NantHealth, does a GPS test on tumors that helps us determine the perfect chemo/radiation therapy to use on our tumors for max effect.

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/24/2018 Femara (letrozole) Surgery 6/13/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (right): Nipple reconstruction
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Sep 20, 2018 02:34AM RobinJ3024 wrote:

Just placing a 2015 study here for reference.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4366360/

Dx 4/20/2018, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 6/18/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/26/2018 Whole-breast: Breast, Lymph nodes, Chest wall

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