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Important Links About ILC
For helpful information, check out Breastcancer.org's ILC section. Podcast: Imaging Tests for Lobular Breast Cancer Lobular Breast Cancer Alliance Brochure - Information for Patients There is also advice and personal experiences from other community members here on the discussion boards, including: ILC Long Term Survivors…
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Imaging Tests for Lobular Breast Cancer
Imaging Tests for Lobular Breast Cancer Nov 9, 2023 Maxine Jochelson, MD, explains the imaging tests for lobular breast cancer, as well as why lobular disease is harder to see on mammograms. Lobular breast cancer is cancer that starts in the lobules, the glands in the breast that produce milk. Lobular breast cancer is the…
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Team ILC Warriors
I thought I would start a new thread for those DX with ILC. I belong to a wonderful IDC Warrior group here and love it. It is a large group whom I love but I am the only one with ILC. So, feel like I need to get to know some of the women out there dealing with this sneaky lurking dang disease. I dont see nearly as many of…
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Mom with stage 2 ILC
hello everyone! this is about my mom, she just went through a single mastectomy for stage2A ILC(multifocal). There were two tumors, one was 23 mm and the second one was 10 mm.No lymph nodes involved, no LVI but PNI was found. So far, no chimeotherapy or radiotherapy was discussed, only daily letrozole. Is this an ok course…
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14 YEAR STAGE 3 ILC SURVIVOR
I’m hoping someone can provide me some guidance. I am a 14 year Stage 3A ILC survivor. I did all the right things including chemo rads double mastectomy and 13+ years of Arimidex. Believing that you get long term benefit of protection from long term use of Arimidex, I made the decision to stop taking it because I was…
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ILC stage 3 and 10 year survival
I am wondering anyone with ILC stage 3 diagnosis and made it to 10 year without any recurrence.
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Starting year 18
For those who remember me, when I first got here and was out-of-my-mind-afraid, thought I would update. 17 years has gone by…time flies. Cannot believe I'll be starting year 18…lots of other stuff to deal with (myself and DH) but so far, no BC recurrence that I am aware of. I mostly post on the what's for dinner or the…
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What? I have cancer?
Let me say, first…save all drafts before leaving this page. I had quite a novella written, and well…here I am again, starting over! 🤣. I was diagnosed in January of this year with lobular breast cancer…ME…that disease that happens to other people! I was lucky that it was found EXTREMELY early. Treatment included a breast…
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ER & PR +, HER 2 - just had lumpectomy and sentinol lymph node biopsy
I was diagnosed with ER & PR +, HER 2 - breast cancer (tumour less than 1cm) in March. I just had a lumpectomy and sentinol lymph node biopsy. 4 lymph nodes removed, the one closest to the tumour was attached to it. What treatment paths are others on for the same scenario?
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Dry Itchy Spot
I was diagnosed with ILC Stage 1 back in November 2012. I had radiation and was on tamoxifen for about a year and a half. I get a mammo and MRI every year. No problems since treatment. About three weeks ago I noticed itchiness on the side of my other breast. Right now it's just a small dry pink spot that is itchy.…
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Confused
Im a 2 time ILC breast cancer survivor. I’ve been watching a spot on my non- cancerous breast for the past 6 months. At times I think yes, there is definitely something there then the next day it is all but gone only to reappear again. I’m afraid if I make an appointment to have it checked it may have disappeared again.…
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Stage 4 lobular, what treatment next?
Hello, My 49yr old sister has stage 4 lobular diagnosed last April. She has a PIK3CA mutation. She was diagnosed stage 2 , 5 yrs ago and was treated with taxol and then 5 yrs of tamoxifen She has bone mets and also had a hysterectomy and they found lobular in uterus/ovaries etc back in April of last year. She failed on 1st…
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Second surgery!?
I had a right breast mastectomy on March 1st for both ILC and DCIS. At my post-op appointment, my surgeon informed me that what had been thought to be two small ILC tumors was actually one and not all of the margins may have been removed with the breast. She is ordering another surgery soon at the same site. 15 lymph nodes…
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Invasive lobular carcinoma
Hi there . I was diagnosed with ilc, had lumpectomy of right breast stated barely stage 1. Treatment: tested one of 2, it’s at 25 which means radiation yet sending back other sample to get tested because over 25 would be to do chemo , then radiation . Stated stats : with chemo 1% of returning , without 12% of returning I…
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Lumps and bumps after mastectomy
Hi all Anyone have any palpable lumps after mastectomy? I have a lump on my inner breast (cancer side but not where the actual tumors were). I actually also feel small lumps in the axillary tail on that side- noticed them at about the same time - 6 months after surgery. The inner breast one is hard and smaller than a pea.…
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CDK 4 6 inhibitor for Stage 2 ILC
Hi Everyone, I was wondering if anyone with stage 2 ILC was prescribed CDK 4 6 inhibitor. My sister was diagnosed with stage 2 ILC. Her oncologist prescribed her only AI but another doctor that she got second opinion from recommended CDK 4 6 inhibitors + AI because her ILC is 100% estrogen positive . Did anyone with early…
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Oncotype Score
I recently had a lumpectomy for Stage 2 ILC which was ER/PR+ HER2-. Tumor was 29mm. There was a micrometasticts found in 1 of 3 lymph nodes. I am 41 years old. I received my Oncotype report today and am hoping others may be able to comment or share their story with similar results and what treatment they moved forward…
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Newly diagnosed - different pathology results post-surgery
Hello, this is my first cancer experience (51 YO still having regular periods) and am new to all of this. Initial biopsy diagnosis was DCIS grade 3, right side. Had a lumpectomy with flap reconstruction 8 days ago and am recovering as good as can be. Received the post-surgery pathology report and it indicates the DCIS is…
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Trials or other treatment options
Hello everyone, I was diagnosed with stage 3 ILC in Feb 2023. Since then I've done chemo (AC-T), radiation, endocrine therapy and just recently started Verzenio. I want to do everything I possibly can to reduce the risk of recurrence. Is there anything I should be considering as well as the above? Thanks!!
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Any long term survivor stories with ILC
Hi, Was hoping for some long term survivor stories. Found so much conflicting information on ILC. Not sure where the truth lies. I know each person is unique but overall hard to find good information on it.
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ILC Long Term Survivors
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
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Just diagnosed, trying to make surgical decisions
Hi. I was just diagnosed with IDC, ILC, E+, P+, HER2-, 1.3cm & 1.7cm tumors (left breast only), 7% growth rate, Grade 2, staging to be done with surgery. Was initially considering lumpectomy with radiation, but am concerned that I have had ILC for a while and it hasn't shown up on imaging. I have had multiple mammograms,…
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Chemo sensitivity test
Hi, I’m in NZ - stage 4 lobular and looking at the tests that tell you what chemo will work. I’ve done Foundation One which my oncologist recommended. I’ve just found out about the Geonostics Exacta Test - snd the Gradient test I’m confused so just wondering if anyone knows what the differences are - or which one is best.…
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Removal of other breast
I had right mastectomy in January for grade 2 ILC. 90mm. Clear nodes. I had a reduction of left breast. Histology of left breast tissue showed Classical lobular carcinoma in situ. Which I have been told is not considered as cancer. I had initially asked for DMX which was refused as NHS does not like to remove healthy…
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Newly Diagnosed with ILC
Hi everyone, it’s still feels strange to say that I have breast cancer. I’ve had a long journey with breast screenings, biopsies and surgeries. In 2017 I was diagnosed with LCIS which I was told was not cancer. I was given the option of preventive mastectomy or the watch and wait option as I had no genes for cancer,…
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Unclear about Oncologist’s treatment plan
I am so happy to have found this forum. I have read so many conflicting accounts of how to treat ILC that I don’t trust my oncologist’s plan. I have ILC - classic with Pleomorphic features, Onco DX score 16, tumor 7.7 (but really two masses measuring ~5 cm total and cancer cells in between them), no nodes. I had a…
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Pleomorphic Invasive Lobular Carcinoma
What a crazy and bizarre diagnosis. Am I the only Pleomorphic here?
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How accurate / relevant is Oncotype DX for ILC?
Hi all - new here and caring for a loved one with ILC. Forgive me if this is a dumb q: but is Oncotype DX as relevant for ILC vs ductal? Thank you.
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Best imaging for screening?
I know MRI is not standard of care (right?), but what do you get for lobular screening? Mammo? Mammo+US? Digital tomosynthesis? MRI? How frequently? Love to all in here.
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Just diagnosed and started treatment for ILC (pleomorphic)
Hi. I have recently joined this forum as I was dx with grade 2, Stage IlB ILC (including LCIS and DCIS) in my left breast. I'm aged 49 years and apart from being a femaie, I don't bear the obvious risk factors for BC. So this has come as a shock to me! My surgery was a week ago. The histopathology showed that the margins…
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ILC - Old Lady Cancer?
When I was diagnosed almost a year ago, my oncologist told me that my daughters and nieces did not have to worry about increased risk of breast cancer, as ILC was "old lady" cancer and not hereditary. Now, I'm not that old (57) but I am post menopause. That being said, I am hearing more and more young women (pre-menopause)…
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5 years post ILC diagnosis. Questions for doctor visit
Hi, it’s been five years since being diagnosed with ILC. On a astrodome 5-10 years. What testing should be considered to decide if I should stay on it? My oncotyoe score was originally borderline high but didn’t get chemo. My body, especially hips hurt all the time. Would love to come off it but nervous to do so. I feel…