TNBC/ - nodes/Complete pathologic response/ still a recurrence?

It would be good to hear other people's anecdotal experiences. It would be great to see better research on recurrences in tnbc. I had surgery before chemo so don't have pCR. So personally, I want to know stats on that type of circumstance, too.

MM

I can imagine it is hard not to be CERTAIN of how your cancer responded to chemo. On the other hand, you did not have lymphatic invasion, nor a huge tumor. So you were in the group that did not *need* immediate chemo, which might mean you had a lower grade cancer, a better immune system, or that you managed to "catch' the cancer much more quickly. Survival odds ARE higher for early stage BCs than later stage BCs.

If 30% of advanced TNBC gets pCR, people in your cohort probably also have at least that rate of "perfect" response to chemo... but also, surgery-first people also have the additional benefits of no nodes, smaller tumor, healthier immune system, etc.

So I'd say your odds of having had an "invisible pCR" are pretty darn high, and I would guess more than 30% as there was less cancer to defeat. Plus you have the probability of non-escape of cells into your blood or lymphatic system as a boost.

Sadly the good odds only help so much, because anyone in either group *can* recur. It's hard to relax totally until that time 3-5 year recurrence window has passed. But at least then TNBCs get to be "done."

bumping this thread for more responses to OP's question.

I did....Original DX was in June 2015, tumor was 3.5 cm. No nodes involved but my docs made that assumption after a PET scan - no node biopsy was done. I had neoadjuvant chemo & declared to have a complete response at surgery.

A little under 3 years later I felt a tug in my chest and they found a small tumor in my chest wall. Scan shows extensive mets in my liver and spine.

I will say my original scans from 2015 did make a notation that my tumor was ‘highly vascular’. The cancer cells most likely spread via blood rather than the lymphatic system.

I not only went through standard chemo but opted for a double mastectomy. 2.5 years later during a reconstruction surgery to remove what was thought to be scar tissue, pathology showed recurrence. Almost the exact same spot. My BS went in to clear margins and pathology came back with unclear margins in the superficial (skin) layer. Just had 2nd lumpectomy in 3 weeks today. Start xeloda in 4 weeks. I had to get a 2nd opinion on treatment as my MO wanted to repeat same chemo as original DX. BS took my case to a breast conference and they said that is incorrect treatment since it didn't work the 1st time. 2nd opinion agreed and I ended up switching MO. I've had trust issues with my other MO. She was assigned to me when orginal MO moved out of state. She never answered my questions, just reassured me everything was going to be ok. That doesn't work for me.

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Lullabelle,

I agree with you that the responsiveness of your medical team can make the difference. I am considering changing my medical insurance so that I can get a different oncologist. MO does not specialize in TBNC and is a little too casual. I’ve really had to push to get tests completed. Thanks for responding. This is an interesting topic

Lulabelle2020,

I think you’re right about the second opinion. I tried to get one from a local well regarded TNBC specialist, but then Covid hit and she was no longer taking new patients. Another lady in this website recommended a specialist that is about 6 hours drive away, and I was hesitant but I think it’s worth getting another opinion, especially since I did not get a PCR but currently NED and on Xeloda. I need to plan for next steps and not wait until the cancer comes back.

I hope your current treatment works for you. I’m sending positive thoughts your way

hi Katiha,
I think it’s because with a small confined tumor the priority is to remove before it spreads. Chemo is back up. With larger tumors, higher stages, the cancer is more likely to have already spread so systemic treatment with chemo is needed as the priority.

In Australia TNBC standard treatment is neo adjuvant chemo then surgery regardless of stage. I was told it was to see if the chemo works. Once the tumor is removed they can’t tell if the cancer is responding. TNBC being particularly aggressive.

What do others think?