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Jan 3, 2012 07:46PM
barbiecorn, a lot of the info regarding PILC on the internet is old. When I was first diagnosed, I was scared reading the studies too, but none of my docs were concerned about the pleomorphic aspect of my tumor at all.
One onc said that it's not clear from the research whether PILC is more aggressive b/c of the pleomorphism of the cells or if it's the HER2+ PILC cases that are that are the issue. Another onc told me that they focus on the ER/PR/HER2 status much more than the subtype (PILC, ILC, IDC) in regards to treatment and prognosis. And my rad onc said she feels PILC is roughly the equlivalent of a grade 3 IDC, but no worse.
I had a bone scan and chest CT when I was first diagnosed, b/c that was the standard of care for all bc cases at my cancer center. I had a PET/CT to followup on a spot on my liver that turned out to be nothing. Ask your onc about baseline scans, although in my experience it is hard to get the insurance to pay for a PET if one has negative nodes. A bone scan and chest CT shouldn't be a problem to get.
I was 38 at diagnosis and am 4 years out now.
Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015
6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel
4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+
5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap
Whole-breast: Breast, Chest wall
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)