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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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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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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?