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Dec 5, 2018 06:51PM
Hi all. I am 45 years old and have ILC. Only one known person in generations of our family has had cancer - my paternal aunt who was 45 years old and had ILC.
I was diagnosed with ILC in early October (on my wedding anniversary) and had my bilateral mastectomy with tissue expanders on Nov 29th (originally scheduled for the 12th but I was unexpectedly severely anemic and had to postpone). My cancer was discovered when my 11 y.o. daughter saw a lump on my chest through my shirt and asked about it. I had been going to regular mamograms and ultrasounds (dense breast). A previous biopsy in 2016 was negative and deemed a cyst. This lump tested positive for cancer. They couldn't recognize it in a mamogram nor ultrasound. When I guided them to this nearly undetectable lump and they finally saw a little something on ultrasound, they suspected a 2cm tumor. In an MRI they saw something on the other side of the same breast which also tested positive and they still expected the original lump to be 2cm.
I received my pathology today. Well, it ends up that I had a 10cm tumor in my (less-than-B-cup-sized) right breast and no one saw it. My four lymph nodes that they removed were clear in the OR test. However, in the pathology, two of the lymph nodes had tumors and the other two had cancer cells. There were also no clear margins with the mastectomy, so the skin on the bottom of the right breast has to be removed and replaced.
The cancer board has decided that I will need Tamoxafin (sp?), chemo, surgery for the skin and then radiation (although the plastic surgeon is lobbying for radiation and then skin surgery). Yesterday I was five days out of surgery and my left breast ballooned up...the drain must have been clogged. And my right side developed red lines and splotching, which the doctor thankfully said was just vascular reaction to the surgery and not a problem. He drained my left breast today but I still look a bit like Dolly Parton on the left and a bit of a train wreck on the right. I couldn't sleep last night, concerned about the swelling. Now I have much bigger fish to fry.
It's been a wild ride that is about to get really crazy. I thought I would share my story thus far in case it helps anyone. I know that reading your stories helps me.
10/9/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2- (FISH)
11/29/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement
1/3/2019 AC + T (Taxol)
5/15/2019 Whole-breast: Breast, Lymph nodes
9/18/2019 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap