My boobs keep trying to kill me
Hello Sisters!
It’s been awhile since I’ve last checked in, but am in need of advice/recommendations/encouragement.
Background – Diagnosed with de novo ILC (ER/PR+, HER2 - ) with innumerable sclerotic bone mets in 2018 at age 50. This was found on a routine mammogram – I was totally asymptomatic. Had a R mastectomy and prescribed letrozole/Ibrance. Six years later, I remain asymptomatic. All bone lesions have remained stable, showing no progression via FDG or FES PET/CT scans.
In August a new lesion in my L breast lit up on routine FES imaging. I’m currently recovering from a L mastectomy. Pathology shows lesion is IDC grade 3 with ER/PR -, HER2 + hormone status. So a new primary diagnosis which is totally different from the original. Thankfully it was caught early with clear margins and no lymph node involvement.
I have yet to formally meet with my oncologist, but she called and mentioned the standard of care is 12 weekly doses of Taxol/Herceptin and then continuing with Herceptin for a full year. She is “on the fence” about whether to recommend proceeding because of the ILC which she thinks is the graver danger. I would continue taking letrozole, but drop the Ibrance.
I’m leaning towards treatment because I don’t want any regrets should the IDC pop up somewhere else. The ILC has behaved itself thus far, perhaps I’m being naive in thinking it will continue to do so.
I’m currently on leave from my full time job and I am guardian to two elementary school aged boys (along with my husband). My job is not physically taxing and I work remote 3 days out of the week. I’d like to continue working throughout treatment.
I am arranging for a second opinion at Memorial Sloan Kettering.
Posting in Metastatic and 2nd primary forums.
Many thanks for your advice and thoughts,
Leigh