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Aug 5, 2019 03:29PM
skv0123, momof2kids gave good advice. I also am not familiar with EndoPredict, so can't comment on that.
For what it's worth, here is my story. I share it to underscore the point that basically bc is a total crap shoot, and ultimately you have to do what lets you sleep at night. The oncologists really don't have the answers--for the most part, they are grasping at straws as much as the patients are. Especially in cases like PILC in premenopausal women, b/c the trials mainly included IDC patients, most of whom were post-meno. In my opinion, the majority of the clinical trial data is useless in a PILC pre-meno case.
2007 Age 38. 2.7 cm PILC, neg nodes. CAF x6, lump, rads. Started Tamoxifen. Lots of PLCIS left over in the boob. Oncotype 18.
2015 Local recurrence in lumpectomy scar line, while still on Tamoxifen. MX with immediate LD flap reconstruction. The surgery has left me in chronic pain and basically has ruined my life. Two oncs were split on whether I should do chemo for the local recurrence. Only one study was focused on chemo for local recurrences, and each onc interpreted the data differently. As I figured there weren't a lot of PILC premeno women in this study, I opted for no chemo, thinking I'd like to save it for down the road. My mom died of bc, so I knew that it was important to preserve treatment options as much as possible.
I had to refuse OS/AI after the local recurrence due to the side effects on top of my horrific pain and tightness from the LD flap. I did go ahead and do a revision surgery in 2016, with a lift on the "good" side.
Jan 2018 The lift masked a new 8 cm primary, with node involvement. Once it was caught, I immediately went on neoadjuvant Taxotere/Cytoxan. Mammoprint high risk.
Midway through chemo, I had to switch to Taxol/Cytoxan, due to side effects. Around that time, I was dizzy, so onc ordered a brain MRI. Surprise, surprise, brain mets.
June 2018 So now I'm Stage IV. Stopped chemo, canceled upcoming mx, and went on Ibrance/Faslodex/OS (started on Zoladex, recently switched to Lupron). I have been stable since then (as far as I know--ILC is so hard to image).
So my point just goes back to what momof2kids said--do what makes you feel comfortable. There is no perfect answer to any of the treatment choices, and quite frankly, for the most part, the cancer is just going to do what the cancer is going to do.
Stage IV Pleomorphic ILC, initially diagnosed at age 38
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
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 IA, Grade 2, 0/10 nodes, ER+/PR+
5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap
2/1/2018, ILC, Right, 6cm+, Stage IIIA, 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+
Faslodex (fulvestrant), Zoladex (goserelin)