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Topic: Diagnosed May 3,2007

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

Posted on: Jul 7, 2007 09:10PM

Trisa wrote:

This year has begun with a journey that would lead me first down one road then another. In February I made two doctors appointments because I was having abdominal pain and other symptoms. One was with my family doctor and the other was my gynecologist. My family doctor said he felt it was a gynecological problem. On March 12th I sat in my gyn office while he explained he could see and feel an abnormality in my vaginal wall. After three weeks of testing and biopsy I was told I had a 15cm tumor in my pelvic wall into my abdomen. Noone around here had seen anything like it. I was sent to Dallas to a specialist there and surgery was scheduled May 9th to remove tumor and a partial hysterectomy.
May 1st I went to have my mammogram. I had a lump I was concerned about when I went to see my doctor. I have had fibrocyst in breast since I was 20. I am 40 now. My doctor thought it was just a fibroid. He told me to be sure to point it out to the tech. I did and the mammogram didnt show anything. She took me down the hallway to wait on a ultrasound. Then I was told to wait on the radiologist he wanted to talk to me. From previous experience with my tumor I knew his was not going to be good. Because I had surgery the next week, my biopsy was done the next day. On Thursday my husband and I sat accross from my doctor while he gave me my report. I have ILC grade 2 HERP pos..
That Friday I recieved four phone calls from doctors my doctor here, the two doing my surgery and the breast surgeon. Everyone reassuring me that everything was going to be okay and that my surgery would be on hold until I met with the breast surgeon on Monday.
I again traveled to Dallas to meet with yet another doctor. My breast surgeon explained to me that mine was small(.8cm)and slow growing and he felt I could continue my scheduled surgery that Wed.. When I asked him what putting off doing aything could mean, he said "What if I told you you have probably had this five years what difference is 8 weeks going to make?" That made me angry not at him but the doctors that I had questioned about this lump the last four years and had blown me off.
Well I made it thru the first surgery. I had a complete hysterectomy as well as the tumor removed. I was in the hospital a week. I lost 20lbs just from the removal of all that. I would not recomend that weight loss program though. Then I started making the rounds with other doctors, reading what I could, talking with American Cancer Society and since my paternal grandmother and her sister both had bc, I had the genetic testing done. I do not carry the BRCA1 or BRAC2 gene. I went for an MRI and again the cancer we know about didnt show up but another spot did. I had my sentinel node biopsy last Friday. They removed two lymph nodes and both came back benign. I still dont know what stage I am. Thought if there was no lymph node involvement that meant no chemo but again the nurse tells me they cant rule that out till after I have my surgery July 24th.
I was told I had a choice of lumpectomy or massectomy. After all the test and talking to radiologist then plastic surgeon. I chose the bilateral masectomy and reconstruction. The fact that I found this one and all these test that are suppose to detect didnt. I am afraid I wont catch the next one and they cant tell me for a fact it isnt in the other breast. I dont want to just live my life but I want to enjoy it. Hotflashes and all . Log in to post a reply

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Jul 8, 2007 03:46AM marshakb wrote:


Bless your heart! My goodness you have really been through it! I just wanted to tell you that I think you are making the best choice in the bi-lat. My surgeon originally talked me out of it and I did the single and now am looking at another surgery to remove the other. (A 1.5 LCIS was found in there that did not show up on mammm or ultrasound) 30% change of having lobular in the other breast is way to much!! I too want to ENJOY my life and I can easily do that without this uni-boob! LOL Best of luck to you! Marsha
I'm not dead yet! Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Jul 8, 2007 11:31AM nash wrote:

Wow, Trisa, that's really something! What was the pathology on the tumor that was in your pelvic wall? Was it benign?

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain

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