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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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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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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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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…
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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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Chemo and Tamoxifen or Lupron and Letrezole
I met with my MO yesterday and her recommendation for treatment was either 4 rounds of T & C chemo and 10 years of tamoxifen or ovarian suppression and AI (letrezole) for 5 years. She did say the chemo may be over treatment for my case however because I have concerns with my ability to complete 5 years of suppression and…
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International Invasive Lobular Breast Cancer Symposium September 28-30 Pittsburgh, PA
September 28-30, 2023 Put this on your calendars! World Experts on Lobular Breast Cancer. Advocates welcome.
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Pelvic ultrasound question
Hey I just wanted to get someone else’s opinion. I just had a pelvic ultrasound done for some irregular bleeding,pelvic pressure and pain. I am 4 years on tamoxifen. It was done in my GYN’s office and was told the doctor would read it. I asked if it would be sent to a radiologist and they said no. It worries me with my…
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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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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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Created post about issues with imaging
Hi! This is in the Stage IV only group. I am placing the link here so annyone with imaging issues can post there. https://community.breastcancer.org/forum/8/topics/883905?page=1#idx_8
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When OncoType Recurrence Score is "Intermediate"
Interested to hear about decision-making/thought process when considering benefits of chemo (vs. risks and side effects) -- my Oncotype DX score was 22 which is considered "intermediate", so my medical oncologist is offering chemo (TC), if I want it. With the patient-specific characteristics added to the result, my distant…
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ILC removed but "extensive" LCIS found
I'm new here, 50 y.o. Just recovering now from lumpectomy and SLNB (8 nodes!) for ILC (ER+, PR+, HER2-, grade 2). My pathology report had clean ILC margins and found only a few single isolated tumor cells in one of the nodes, so that was good news. But my tumor was much larger than the doctors expected from prior imaging…
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Ca-153 has gone up suddenly after 10 years
hello all our lobular family! Been ages since I’ve posted but I had a scare yesterday my TM ca153 gone from 28 to 188. My GP ran the tests as I’m almost ten years since mastectomy. I’ve been quite unwell, very sore back and tummy so getting scans done in next few days. I’ve been having terrible vomiting too so something…
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concerned about local recurrence
This fall I noticed a lump on my scar. noticed it because I felt a tug at this spot when I was cleaning windows. I am in a quandry because my cancer did not show on MRI or mammogram. It did show up on ultrasound. I made an appt to talk to a surgeon who has researched lobular cancer. In the meantime, I had a yearly appt…
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Crazy metastisis with lobular
Hello… I was originally diagnosed with ILC in 2013, stage 2B with three lymph nodes positive. I was ER positive and her2 negative. Had double mastectomy, 8 rounds of ACT and 5 years of AI. Now I have been diagnosed with malignancy in a lymph node in porta hepatic which is where blood vessels feed into the liver and other…
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ILC MRI results, answers please
Hello all, Yep, the sneaky ILC. Mine is 1.9 cm mass, lumpectomy scheduled. Sent to get MRI for a "better look". No lymph node involvement but some "subcentimeter" nodes and linear enhancement throughout breast. The rad doc recommended follow up ultrasound of full breast and if no correlates a MR guided biopsy of 1 of 2…
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Denver area event to learn about ILC - June 1, 2022
There will be a free meeting June 1, 2022 for patients, advocates, researchers, and clinicians interested in learning about Lobular Breast Cancer. Organized by Dr Matt Sikora, lobular researcher, and Dr Tracy Cushing, clinician and lobular breast cancer patient, this informative evening will cover the biology, unique…
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Mammogram
Just a little background. I'm almost 61. I was diagnosed in November of 2012. ILC 1 cm so stage 1 grade 2, left breast. I had a lumpectomy and 6 weeks of radiation. I have a mammogram every June and an MRI every December. I'm considered higher risk because my mom had breast cancer and my dad had prostate cancer plus I have…
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LBCA founder and lobular advocate Leigh Pate has passed
It is with a heavy heart that I share the news that Leigh Pate, founder of the Lobular Breast Cancer Alliance (LBCA) has died. Leigh did not die from lobular breast cancer, but from complications from stage 4 fallopian tube/ovarian cancer. She was diagnosed with this second primary cancer several years ago and went through…
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ILC Operation on the lungs.
I want to decide and find out if you acted the way I want to do it. There is a tumor in the left breast. The tumor decreased within two years. But now, after 2 years, increased by Ribociclib-Letrozole. Also, a focus appeared with uneven contours, in the right lung - 6-8 mm. Perhaps this is the remnants of Covid, which was…
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needing support
Hi all, back after my MRI in Sept-they found fat necrosis in my left breast--everything else ok-- of course in September I was only a little worried-but now I go back on 3/29- and a little anxious-- I am trying to reassure myself with the report from then which was "unlikely to be malignant" but you know how it goes....…
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My ILC friends
I’m curious. I will have had chemo, DMX , and radiation and Tamoxifen when all is said and done. I was stage 3 because of the larger size and a few suspicious lymph nodes. But they were never tested before chemo and after surgery they were negative. I also got an over 2cm or more margin all around. I know this is a dr…
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Pectoral Muscle —pleomorphic ILC
My mother (82) has had surgery to remove 4cm tumor that was embedded in pectoral muscle. Stage 2. The margins were positive. No second surgery. She went through 23 days of radiation. 8 days for pectoral muscle Has anyone had this diagnosis?? If so, could you share your experience I asking for percentage of reoccurrence,…
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My cancerversary--completed 15 years
I guess the title says it all. I'm starting year 16 and did not think I'd be here to type that. Life is full of surprises; some pleasant, some, less so....buckle up and enjoy the ride! Carpe Diem.
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ILC Mammaprint and CHEK2 gene mutation
Hi, I am Gloria 55 and I have been diagnosed with Invasive Lobular Cancer -22mm. Estrogen Positive, HER-negative, one lymph node taken out and showed negative. According to Oncologist I was borderline to be considered Chemotherapy. Prosigna test was done and showed "medium" risk of reoccurrence. It was left for me to…
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Deciding whether to do chemo
Hi all, I’m new to this forum- have spent some time reading other posts but this is my first. I was diagnosed with ILC on 2/7 and had a single mastectomy (left) on 3/7. Met with MO 4/6. Surgery pathology revealed 1.5 cm tumor plus one other .2 cm mass. Sentinel node #1 had some isolated cancer cells but considered node…
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IDC turned out to be ILC after surgery - confused
I'm new here, two weeks post-surgery, 47 years old, and confused about a change in diagnosis after surgery My original DX in December was 2.1cm stage 2 IDC + DCIS in the left breast. I had a tumor biopsy and a lymph node biopsy on the left, an MRI on both sides, and an MRI-guided biopsy for a lump on the right (that turned…
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New diagnosis, booster shot and work?
During my cross country move my PCP told me I had ILC in my left breast. At 51 I am starting a PhD program next week (long story). My original plan had been to get my booster shot when I got here as I had been told to wait until after my mammogram and biopsy. I have my first oncology appointment this coming Tuesday…
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LBCA Educational Webinar on FES PET, Thursday 12/2, 12pm EST
This pre-recorded, educational webinar, moderated by LBCA Executive Director Laurie Hutcheson, will feature radiologist and LBCA Scientific Advisory Board Member Dr Gary Ulaner, oncologist Dr Hannah Linden, and a patient with metastatic ILC who all have experience with Fluoroestradiol (FES) used with Positron Emission…