TNBC/ - nodes/Complete pathologic response/ still a recurrence?
Has any of you lovely TNBC been node negative, had a complete pathologic response to chemo and then STILL gone on to have a recurrence??
Comments
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Bumping this thread because I am very interested in this question too.
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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.
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Still too soon for me to consider a reoccurrence since I just finished active treatment. However, my MO said achieving a pCR took the 5 year disease free survival rate from about 72% to about 96%. So yes it can happen, but it reduces the probability significantly.
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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."
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Yes, santabarbarian, I figure the odds are in my favor, for a variety of reasons. But because I'm an analytical type, I like to know numbers, too. I was an investment manager for many years and my training is in understanding probabilities, including the fact that a zero probability doesn't mean that something can't happen.
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bumping this thread for more responses to OP's question.
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I'm curious to see any responses to this question as well.
(I was TNBC, node-negative, did not have a pCR (3 cm tumor left at surgery). I'm actually considered high risk for recurrence due to that and the fact the initial tumor was huge.)
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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.
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Thanks for replying, Kelly. I am sorry to hear it. Is your treatment tolerable?
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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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I had a recurrence within a year of receiving a complete pathological response to neoadjunct AC-T treatment. I opted for a lumpectomy followed by radiation but then 9 months later had a recurrence to my chest wall. Since then I’ve had carboplatin and gemzar followed by more radiation and Xeloda. It came back again just 5 months after completing Xeloda but this time in an intermammary lymph node that was surgically removed unfortunately with positive margins. It took only 4 months for it to come back AGAIN in three spots all within my chest. I was on Abraxane and Tecentriq but scans last week showed the one mass that’s near my aorta and pulmonary artery has grown. I’ll be going through with high dose radiation to zap it and then be put on a PARP inhibitor.
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Reece0630 and Kconcordia13 - We're sorry that you have to be here, but we just wanted to drop a note to welcome you to our lovely Community! Your sure to find a valuable network of support here, and we hope you come back again soon and let us know how you've been doing!
Wishing you well,
The Mods
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I had a PCR I had no nodal involvement and they removed them to check as my lump was reasonably big! Three years later after repeatedly saying something wasn’t right I have TNBC mets to skin and left lymph node involvement (opposite side) I’m on Tecentriq and Abraxane treatments S.E. are minimal praying it works at my 3 month scan. Having a thorough medical team who listen is the biggest prevention the amount of ladies who say no one listened is scary!!
A lot of people are fine so don’t let it run your life but make sure even the slightest concern is followed up thoroughly!!!
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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
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NorCalS,
Any doubt change I kick myself for it and wish I’d initially gone with a specialist in TNBC I was never told how dangerous or tricky it could be to treat or how important those first five years are!!
My place were really slack with me. I think non specialists for TNBC don’t think about our risks or limited options if things don’t work. TNBC is a tricky little lady whos very smart. My closet friend always joked trust you to have a smart, stubborn rare tumour! (Sometimes you just have to make humour about it)I haven’t changed my onc yet as it’s the nearest place to get my current treatment which matters when you are there twice a week three times a month and an extra time for the onc (bloods and infusions). Being in the uk with the NHS rather than insurance it’s a nightmare to change and get an appointment! I am however getting two second opinions on the side to make sure she has done everything possible!
Praying this treat works and continues to but any sign of it not and I’ll be heading to a specialist which will involve a very long trip But worth it.
We have to take care of ourselves and I’m hoping to see you reaching the five year point with nothing but positive outcomes 😊
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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
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Anybody knows why by protocol stage 1a is first operated and then given chemo, versus larger tumors are first shrieked by chemo and you can actually see the progress?
I think it’s kind of a bummer that you don’t know if chemo actually helps heh they do it after surgery
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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?
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