Best Of

Yes I have an advantage plan. A friend of mine has regular Medicare but gets the fitness benefits from her medigap plan though.

Warning - this is a book - LOL! I have just joined this group and really enjoying everyone's input on various topics, and sharing their journeys. I'm an mBC newbie, initially diagnosed in 2018 (post-meno) with Stage 1A HR+ HER2- IDC. I chose lumpectomy and radiation and started anastrozole after radiation (my OncoTyping showed no benefit to chemo). Also had the Breast Cancer Index test done, which showed low risk for recurrence, so my anastrozole was discontinued after 5 years.

Jump to 2025: Lung mets, and likely was there as far back as initial diagnosis, but stabilized by the AI.

How It Was Discovered:

2021 (3 years after initial diagnosis): Incidental finding on CT after a fall and febrile seizure reaction to the 2nd Shingrix vaccine. The CT revealed lung nodules (predominately in opposite lung from my breast tumor), which were thought to be benign and common in most people in my region due to our air quality. Still we did follow-up CTs every 6 months for 2.5 years.

2024 (5 years after start of initial treatment on anastrozole): Was about to stop with CT follow-ups due to no changes in the nodules to speak of over that time period. Then I had a period of fatigue and low-grade cough that my husband noticed. I asked for one more CT (via my oncologist) just for good measure. That CT showed growth in some of the nodules, so I then had 3-month CTs there after (so 2 more CTs), which all showed slight growth from the previous.

Jan 2025: The consistent growth over the past 2 CTs concerned my onc because the growth only began after I stopped the anastrozole. My onc referred me to a pulmonologist. He compared the films and ran a PET. Some of my nodules had slight uptake on the PET (pulm was still not convinced of malignancy). Then the pulm did a navigational bronchoscopy and biopsy of the largest of the nodules (still very small at just 7mm). The result was lung mets.

NOTES: My onc believes that in my situation, the metastasis may have occurred via my bloodstream rather than my lymph system (there has never been visible lymphadenopathy and my initial node biopsies were negative). It's also suspected that I might have had mets on initial diagnosis in 2018, but no one could have known since no other scans or tests were done at that time (and the risk was low based on my tumor markers). If the mets was actually present initially, then it was stabilized solely by the anastrozole for 5 years. Once the mets was confirmed, my onc put me immediately back on the anastrozole and started me on Kisqali (targeted therapy). I've only been on it for one week with no side effects. Anyone out there know how soon fatigue might likely begin?

QUESTION: Thankfully the mets was stabilized all these years, but I'm really curious why the diagnostic standard does not include some sort of check for circulatory mets instead of just assuming if it's not in the lymph nodes, then there's likely no mets? I've read where 30% of mets is via bloodstream. If it's that common, then why wouldn't we receive a baseline CT in the beginning, and maybe a less aggressive CT cadence (like once a year) to ensure no mets is missed and progressing?

I have an amazing top tier oncologist, so this is not meant to criticize my cancer team in any way, but rather to question the standard diagnostic procedure out there for seemingly low-risk BC patients with negative nodes. Honestly, even if I had a CT back then, in my own case, everything remained so stabilized that my outcome may have been the same anyway. But they might have started me on targeted therapy sooner. But other patients might not be as fortunate…they could have had mutations or become refractory to their AI over the 5-year period, with mets progressing (maybe even to multiple organs) unnoticed until symptoms presented.

Not sure there's a good answer, but seems like a base-line CT on initial diagnosis might be a step toward finding potentially detectable but commonly missed circulatory mets. Thoughts out there?