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Topic: Meeting with Surgeon Tomorrow

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

Posted on: May 26, 2021 09:43PM - edited May 26, 2021 09:43PM by pudelpointer

pudelpointer wrote:

I meet with the breast surgeon tomorrow and I am looking forward to getting some answers and a treatment plan lined up.

I really hope for double mastectomy before other treatments start. But based on tumor size I guess we will see. Not sure why I hope for surgery first other than wanting the cancer out yesterday! Looking forward to tomorrow so I can get some answers and see what my next steps are.

Has anyone done neoadjuvant chemo? The radiologist and nurse navigator both said this may be in my future. I am having a hard time finding many articles about it that don't make me question that choice. Hoping she can answer some of those doubts too if that is the route I am on.


41 at diagnosis. Neurofibromatosis Type 1 (Diagnosed at 5 years old). MammaPrint: Low-Risk Dx 5/14/2021, ILC, Left, 6cm+, Stage IIIA, Grade 1, 4/14 nodes, ER+/PR+, HER2- Surgery 6/21/2021 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 7/12/2021 Lymph node removal: Underarm/Axillary Chemotherapy 8/9/2021 AC + T (Taxol)
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May 26, 2021 11:05PM trinigirl50 wrote:

Hi

I can only give my experience.

I wanted my tumour out immediately and didn't take my time to weigh pros and cons and I do regret that. My treatment probably would not have changed very much but I would have liked to know if the chemo had an impact. Often ILC does not respond to chemo, so it may be well worth it to find that out. If you have already removed the tumour and then do chemo you have no way of knowing whether it was useful or not.


trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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May 26, 2021 11:10PM pudelpointer wrote:

This makes so much sense. I did see that regarding chemo in my research as well, I will keep this in mind when making decisions tomorrow. I need to not let emotion drive my decisions and rely on research a d experience of my doctors. Thanks for your feedback and lessons learned along the way.

41 at diagnosis. Neurofibromatosis Type 1 (Diagnosed at 5 years old). MammaPrint: Low-Risk Dx 5/14/2021, ILC, Left, 6cm+, Stage IIIA, Grade 1, 4/14 nodes, ER+/PR+, HER2- Surgery 6/21/2021 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 7/12/2021 Lymph node removal: Underarm/Axillary Chemotherapy 8/9/2021 AC + T (Taxol)
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May 30, 2021 05:45PM wallycat wrote:

Not sure if your stats on the bottom are from a lumpectomy or from a biopsy. I ask because my biopsy was wrong; my imaging was wrong and the initial lumpectomy allowed me to make my decision. Since I had no node involvement, I was able to take the oncotypeDX test to see how beneficial chemo would be. Unfortunately, I fell into the gray area. I ended up going back to have a bilateral mastectomy to avoid rads but many gals are happy with rads and a lumpectomy (science says it is equal in terms of outcomes).

Best to you.

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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May 30, 2021 06:18PM TXLorelei wrote:

in my case the Tumor Board recommended neoadjuvent hormone therapy. It did shrink my tumor somewhat but none of of the pre-surgery imaging showed the true extent of my lymph node involvement. So now I’m doing chemo.

I completely understand the desire to have the surgery right away. In my case the 7 months of waiting drove me crazy and didn’t accomplish much.

Dx 7/7/2020, LCIS/ILC, Right, 5cm, Stage IIIC, Grade 2, 26/26 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/12/2020 Femara (letrozole) Surgery 4/1/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Right Chemotherapy 5/21/2021 AC + T (Taxol) Dx 8/25/2021, LCIS, Left, 1cm
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May 30, 2021 06:56PM pudelpointer wrote:

Wallycat, my diagnosis is from biopsy. Surgery is scheduled now for June 21st for a double masectomy. I have a genetic condition called Neurofibromatosis Type 1 which increases chance if breast cancer and reduces odds of successful treatment so I am doing what I can to eliminate some risk in the other breast where ILC can be contralateral. It will be interesting what the testing of the tumor says after surgery. It will also be interesting if MRI was correct in showing only 10% chance of lymph node involvement where my nodes showed normal on all imaging.

My doctor ordered a mammaprint test with the tissues from the biopsy, she said they took plenty. So that will be one factor they will consider if I need chemo or not.

TXLorielei, they considered neoadjuvant chemo for me, but with my choice of having a full masectomy and the appearance of almost a 1/2 inch of clear margins between the tumor and chest wall they were confident I didn't need it first. I still worry my lymph nodes may be involved. I want June 21st to be tomorrow. But alas, I will put my big girl panties on and be patient.


41 at diagnosis. Neurofibromatosis Type 1 (Diagnosed at 5 years old). MammaPrint: Low-Risk Dx 5/14/2021, ILC, Left, 6cm+, Stage IIIA, Grade 1, 4/14 nodes, ER+/PR+, HER2- Surgery 6/21/2021 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 7/12/2021 Lymph node removal: Underarm/Axillary Chemotherapy 8/9/2021 AC + T (Taxol)

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