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Sep 26, 2020 05:20PM
See what you think about this paper:
It's one of my favorites, in part because I think the information presented in Table 1 is very eye opening.
That's great that you found a radiology group that is willing to look at info that you provide them. I'm on my fifth oncologist, because the prior four oncs refused to pay attention to the peculiarities of ILC, and the radiology groups they used were equally uninterested. I am now finally with an ILC savvy oncologist and radiology group, and it's like we are all talking the same language.
I'm one of the weird cases where not only do I have brain mets and cranial nerve involvement, but I also had ILC land in my extraocular muscle. My CNS mets were all found because I was symptomatic, and then were confirmed off of imaging once they knew where to look.
Good luck with your PET--I hope your bone and abdominal pain turn out to be non-cancer related!
Stage IV Pleomorphic ILC, initially diagnosed at age 38
6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel
12/27/2007 Whole-breast: Breast, Chest wall
3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+
5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap
2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+
2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel)
6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+
7/1/2018 Ibrance (palbociclib)
7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH)
7/17/2020 Xeloda (capecitabine)
Faslodex (fulvestrant), Zoladex (goserelin)