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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…
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CA 27.29 of 117. I'm worried about recurrence now
My tumor markers have always been in the 20's. Suddenly 117. My annual appointment for Nov 5 just got bumped up to this Thursday. Any information is welcome?
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Did you receive chemo for ILC?
I was recently diagnosed with invasive lobular cancer. The tumor was larger than any imaging showed, the pathology after BMX, showed a 5.5 cm tumor, and 2 other 1 cm tumors in the same breast. The sentinel nodes showed trace cancer cells but the surgeon said this is considered negative. My tumor was ER/PR positive, HER2…
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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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Post surgery for ILC
Hi everyone, Had a lumpectomy for ILC on Aug 11. Just got the pathology report today saying, thankfully, 0/3 for lymph nodes, but 1/4 for positive margins. Of course, I got the path report on late on a Friday afternoon and the doctor's office is closed until Monday, so thank goodness for all of you. 2 questions: 1) Over a…
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2020 ILC Symposium in Pittsburgh - Save the Date
The Lobular Breast Cancer Alliance will be actively involved in the 2020 conference. Sign up for their newsletter to stay up to date!
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Anyone else Lobular and her2 positive?
Hi, hope everyone is well. I was diagnosed in January this year and this is my first post. I can’t seem to find many people that also have ILC cancer and that are her2 positive and I have been searching for survivors for reassurance 🤞 I have a large tumor which was reduced to 3cm after chemo. My MO Is waiting for Her2…
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Any experiences of invasive pleomorphic lobular carcinoma?
Hi all, I've just managed to get hold of a copy of my pathology report today and noticed it said I have 'invasive pleomorphic lobular carcinoma'. This was never explained to me by either my breast surgeon or oncologist, but seems very rare (less than 1% of breast cancers?) and some differing reports of it not having a…
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Very, very interesting study on ILC
Invasive lobular carcinomas (ILCs) account for 10–15% of all breast cancers. They are characterized by an elevated endocrine responsiveness and by a long lasting risk of relapse over time. Here we report for the first time an analysis of clinical and pathological features associated with the risk ... I hope that I…
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Whats your ILC story?
When I was diagnosed, I came to this board and read the 15 pages of messages from other women with ILC. It was such a huge help for me. That thread is gone so I'm starting this thread so we can all post our stories. I went to the OB/GYN in Aug. 06 and told him my right breast appeared to have gotten smaller in the past…
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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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Any ILC long term survivors with really large tumor ?
Hi I am looking for reassurance that I can beat this. I had a diagnosis of ILC on 6/6/12 and a left masectomy 8/9/12 or some date really close to that. I did CMF chemo for 6 months and radiation too. I detested every second of this brutal primitive "treatment". I often feel that I wasted my time and are messed up with my…
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Can ILC be grade 1?
In my path report it said ILC grade 1. Is this possible?
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No chemo, node positive
A BCO member would like to hear from anyone who had ILC and positive nodes with a fairly low oncodx score that did not do chemo.
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Did you know this about where ILC recurs?
I found this on the Fred Hutchinson Cancer Research Center website. It's something we should all know, and not a single doctor in 10 years has told me. ILC not only has a tendency to recur later than other breast cancers, but it tends to come back in different locations in the body than others. Lobular's metastatic spread…
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What were your ILC symptoms before diagnosis
They say ILC doesn't usually cause lumps in the breast and it doesn't usually show up on Mammo's-- so what prompted further testing in your case that led to finding Lobular C? It's scary because every year after a mammogram I feel relieved that I don't have cancer -- but now I know that's not a reality. I did have a lump…
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Excessive Drainage after Mastectomy
Hi Ladies, Not sure if this is right forum, but I'm wondering if anyone has had their post-surgery drains in for longer than 3 weeks? I'm on Day 22 and I'm still producing 50 ml on each side. Dr. says they shouldn't come out until I'm below 20 ml. each side. How can I help that along? Why am I still producing so much? Are…
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ILC & No Chemo?
Trying to find others that did not do chemo and have ILC. I am coming up on my one year since dx and just changed over to Arimidex. What treatment are others receiving?