Hi all, my mother was recently diagnosed with stage three triple negative, invasive lobular carcinoma. Her oncologist is having her start keynote-522 this week, with weekly infusions for the first 12 weeks and biweekly for another 8 weeks. She is not a candidate for surgery due to the size and the oncologist noted that they will not do any scans until after chemo is complete.
I am becoming a bit concerned because I’ve read online (r/breast cancer and anxious Googling) that ILC is not responsive to chemo and that the keynote 522 research focused primarily on those with TNBC IDC.
I wanted to reach out to the community here to ask if anyone has any success stories or insights as to how to best proceed. The oncologist assured us that my mom’s diagnosis is very treatable and very responsive to chemo, but what I’ve read online about lobular TNBC specifically contradicts this. In particular, I read about a study from 2023 that noted none of their patients with ILC TNBC responded to chemo and experienced aggressive spread throughout the body, which REALLY terrified me.
The oncologist assured me that this is the standard of care for TNBC and would be recommended if we reached out to MSK. Is a second opinion worth it? Are there any folks out there with TNBC ILC who could provide anything I should advocate for?
Thank you very much in advance for reading this and thank you for this community—I’ve been reading up every day to give my mom the best chance of survival. Thank you. 💗