Very rare breast cancer diagnosis: ACC basaloid subtype

SHW

Hello! I am new to this group, and my heart goes out to all of you-I've read a lot of the posts. What strikes me is how we keep fighting and how strong we women are. I'm still working, but will retire next week. I make myself walk 3 miles/day even when I hurt all over, because I feel better after!

Well, my diagnosis is triple negative IDC invastive Adenoid Cystic Carcinoma, solid Basaloid subtype. ACC Basaloid is extremely rare- 1% of all breast cancers. My surgeon said "The rarest of the rare" and she contacted MSKCC for a second opinion on the diagnosis, and they concurred. They are treating it the same way they treat triple negative breast cancers because there's not enough literature out there on it ACC basaloid, and there is no blueprint doctors can follow.

Question #1. Has anyone had this diagnosis or have any suggestions as to where I could find someone or group who has this type of breast cancer? I am being treated at Yale and I met virtually with a doctor at MSKCC for a second opnion on the treatment. The doc there said in his 35 years, he could count on one hand how many ACC basaoid diagnoses he's seen.

I just finished 4 infusions, 3 weeks apart, of taxol and cytoxin. Still have side effects of numbness in cheeks, eyelids, tearing of eyes, nail/toe issues, and diarrhea, but the pain in nails have been lessening and I finally got my taste back! In a few weeks I'll start 21 days of radiation.

Question #2: Has anyone with triple negative breast cancer had similar treatment prescribed? I read something about immunology treatment for triple negative, but was not given that option.

The good news is that although it is grade III, the lymph nodes were negative as were the margins, and the tumor was 1.5cm although it grew 1 cm in just 7 months so it's aggressive.

Thank you!!

~SHW