Anyone ILC or PILC with brain mets?

nash

I was diagnosed with brain mets last month. I'm HER2-, so I was a little surprised. No evidence of mets below the neck. Anyone else with brain mets? I'm in several FB groups for ILC and Stage IV, and even one specifically for bc brain mets, and I haven't come across any other ILC ladies.

wallycat

((((((((((((Nash))))))))))))

What were your symptoms? I'm almost scared to ask. Stupid cancer. Can they treat with Keytruda or ??

Best to you.

nash

Thanks for the virtual hug, Wallycat!

I have been having episodes of unsteadiness, so onc ordered an brain MRI just to be cautious. Ironically, my unsteadiness is most likely inner ear related. The brain lesion is too small to be causing symptoms, so was basically a incidental finding.

I had it treated with cyberknife and am now on Ibrance/Faslodex/Zolodex.

wallycat

The human body can sure be a pain! Hope you are doing well and that this stupid cancer just never shows up ...ever...ever again.

Stupid question but just wanted to clarify...mets, so this is ILC, not a primary, right? OK, I'm trying to imagine this surgery and maybe I'll just continue to send good thoughts and wishes. I'm playing ostrich.

nash

Correct, the PILC has spread to my brain. I do not have primary brain cancer.

It’s pretty unusual for ILC to spread to the brain, and I haven’t found anyone else in that boat, either in bc.org or on FB bc groups.

gwydiana

Nash, I was recently diagnosed with PILC -- no mets so far. I'm also in San Diego. It's such a strange extremely RARE disease....

oneillsm5

I have both ILC And IDC with liver and bone Mets. I also have/had a single brain lesion which was zapped with Radiosurgery. Waiting to see if it's worked. I didn't realize it was rare. I had a de novo diagnosis in mid July.

MoonGirlJess

nash—sorry to hear about the brain met. Hope they zapped it real good.

Jess

nash

oneillsm5, I wonder if your brain met was from the IDC, not the ILC? Have they biopsied your liver and bone mets?

MoonGirlJess, thank you! The cyberknife shrunk the lesion down. I have another brain MRI coming up in a few weeks to see if I've sprouted anything new up there.