CTs to Determine Circulatory Mets with Negative Nodes (warning - this is long!)
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?
Comments
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Hi @jskmbcfighter, I'm so sorry about your lung mets. Unfortunately SOC in breast cancer calls for screening only those with stage 3 to look for mets. There is a "low yield" of progression in those with stages 1 and 2 so it is considered economically not worthwhile. Also, possible scanxiety and radiation esposure are cited as reasons it is not done.
Breast cancer can spread through the blood and lymph channels without being detected in the axillary nodes. I had LVI in my tumor pathology. My MO said that was not good (the cancer cells proved they had learned to travel) but ASCO does not consider it in staging or treatment. Even the discovery of ctDNA in the blood does not trigger treatment.
Many people have received a stage 4 diagnosis from scans unrelated to breast cancer. Otherwise, they have had to wait until symptoms appear which often doesn't happen until things are more advanced. I had rare serious side effects from radiation so I now get regular scans of my lungs, esophagus, thyroid and hip. Cancer spread hasn't shown up yet but I feel better knowing I am under surveillance.
There are numerous threads on Kisqali on this site which tell of others' experiences and provide advice to lessen side effects. If you enter Kisqali in the search function at the top of the page they will come up. There are members with lung mets on a variety of treatments and zoom meetings for those who are stage 4. You can connect with others in similar circumstances for advice and support.
I hope Kisqali has minimal side effects and keeps you progression free for a very long time.
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Thank you so much for this very clarifying response. Those of us with low risk of recurrence but who fall in that small percentage for mets end of going missed as a result, but yet it makes perfect sense what you described above. Also interesting that the ctDNA does not trigger treatment.
Again, no noticeable side effects on the Kisqali so far, and hoping my first set up labs next week turns out fine. I'm so thankful for this wonder drug (along with anastrozole) and just pray for no mutations that force me to a 2nd line therapy!
I wish you the very best and hope for no mets in your future!!
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sorry for the lung mets. I am also stage 1 ER+ done mastectomy with no chemo. Can I know what is your Oncotype score?
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Yes, it was 20 (lower moderate risk). So no chemo for my first diagnosis. Only anastrozole after lumpectomy and radiation. If I was de novo without it being known, then thankfully the anastrozole kept me stable for 5 years until my new mets diagnosis! Did you have radiation?
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no radiation, on tamoxifen only. My standard surveillance is only mammogram yearly and breast checkup by onco half yearly. I really think we need more check to detect circulatory mets.
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Yes, I agree. While I can understand some of the reasoning for expense and "scanxiety", seems we are losing (or shortening) lives by not being aware of circulatory mets much earlier. Of course some are too small to detect on CT, but not all are too small, and those lives could be extended. Feels weird to know that I may have been de novo, yet with a recurrence risk of 4.7%. This is counterintuitive! Right now, I'm diagnosed with lung mets, but since it wasn't addressed initially, it could already be in my bones but too small to see on CT or PET. Again, I'm fortunate to have the incidental finding, and praying the Kisqali is keeping everything (whether detectible or not) stabilized!
I wish you the very best, Bridget - and pray your cancer never returns!
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