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Jul 7, 2015 07:52PM
Good luck everyone. Thank you for the links.
I was diagnosed with Pleomorphic Invasive Lobular Carcinoma, Pleomorphic LCIS, and Tubular Carcinoma in June 2014 at age 49. The Pleomorphic Invasive Lobular Carcinoma and the Pleomorphic LCIS grew in a lump that was previously biopsied and was benign when it was originally biopsied years ago. I am very lucky. I believe that the only reason that the Lobular Carcinoma was diagnosed is because the original lump changed; As you know, Lobular carcinoma is "sneaky" and is extremely difficult to detect.
I had a second lump that was also biopsied years ago and the diagnosis was fibroadenomatous hyperplasia. When the original malignancy was detected in June 2014, another biopsy was done on the second lump just in case since nothing was seen on the mammogram or sonogram. The lump was palpable. It came back as being benign again but the name changed to flat epithelial atypia.
I was concerned about the change in diagnosis on the benign lump. I had a lumpectomy on the malignant lump with the IPLC and LCIS, and I also had a lumpectomy on the second benign lump. The final pathology report of the second lump showed that I had Pleomorphic LCIS with Ductal involvement all over the lump and I also had Tubular Carcinoma.
I was diagnosed early so luckily, I was Stage 1. I had a breast reduction and a breast lift so that my breasts would match because they had to remove so much tissue in my left breast (12 cm) from the double lumpectomies. My insurance company was kind enough (lol) to deny coverage stating that I had cosmetic surgery! After a year long fight, my insurance company has finally paid for the surgery. After the lumpectomies, I had radiation, and I am taking Arimidex/Anastrazole. My oncotype score was low so I did not need chemotherapy. I had a bilateral salpyngial oophorectomy to put me into menopause so that I could take the Arimidex/Anastrazole. I was not a candidate for Tamoxiphen because I am a poor metabolizer of Tamoxiohen.
My concern is that since Invasive Lobular Carcinoma and LCIS is extremely difficult to detect and since it is "sneaky", that it may be present in my breast(s) and that it will not be detected in the mammogram, sonogram, MRI, or in a biopsy. Since this has already happened to me, I am worried. I was fine all year. I only started to worry when I had my 6 month diagnostic tests. Now, I can't stop worrying.
My mammo and sono were clear but the MRI detected 2 suspicious areas. (May 2015) One area was biopsied and it showed 7 benign findings. The other area couldn't be biopsied so I am waiting and watching for 6 months. I am fine with that because this area is probably scar tissue. I have a giant 8cm hematoma from by MRI guided biopsy in May that is still hard. My doctors are not concerned about the hematoma because they say that it could take 6 months to dissipate. They also say that a hematoma can be differentiated from other breast issues on diagnostic tests.
I also have very dense breasts with fibrocystic disease. My radiologist stated that I have lumps everywhere but that they are due to fibrocystic changes.
How likely is it that if the Lobular Carcinoma returns that it will be diagnosed and not missed? How do I stop worrying?
Pleomorphic ILC. 2 primary bc's plus Bifocal Pleomorphic LCIS along w/ALH, PASH, and FEA. Oncotype 14, Ki67: 21%. Premenopausal DX.
6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2-
7/21/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal
7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2-
9/6/2014 Whole-breast: Breast
10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)