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Looking for similar success stories

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Sara0414 View Drop Down
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    Posted: Mar 04 2017 at 10:28pm
Just curious.... how many of you with TNBC had a tiny single distant met received aggressive treatment, achieved NED and has been able to stay off treatments and for how long? With the limited amount of disease my doctors are treating me with curative intent but give me mixed signals as they are uncertain if I am Stage 3c or Stage 4. They also said that my case is so rare if the distant met was truely cancer because a single paratracheal node is not commonly seen with Stage 4 patients.. That I don't fit the typical stage 4 cancer patient profile but due to the lack of evidence they are treating me as if I was Stage 3c. I am about to do 12 weeks of carbo and toxyl on a weekly basis and then radiation but only on the chest wall not paratracheal node (which frustrates me but I am going to keep looking for a radiologist that will) I just wonder if this will be worth it since it may have spread outside of the breast. After searching like a crazy, I have found/spoke to a few Stage 4 tnbc women that have had aggressive treatment for small mestatic disease and has had long term success (one 7 years since last treatment and she had a lung and brain met, one just celebrating 6 years since last treatment and she had 2 lung mets) and another going on 5 who had a single lung met). Just curious if there are more? The more the better for me because the treatment I have had has already made me feel so worthless and feel like a worthless mom! I am afraid this aggressive treatment will be all for nothing and have I only lost more time with my daughter.
A little background about my case. I just completed 4 rounds of AC, did Pet and it shows now signs of cancer. December pet showed 2 hot spots lighting up the same which were a sub pec 1.5 cm tumor (ended up being 3 lymph nodes) and a paratracheal lymph node 1.5 cm. Pec tumor has been removed. Paratracheal lymph node still there. It was bronched but after I started chemo (between 2nd and 3rd round of chemo). The tissue was necrotic and did not appear chemo treated (onc says that increases chances of it being something else other than cancer but there is still not guarantee). Pulmonologist also said the tissue didn't look it was was cancer (he said the texture didn't look the same in comparison to necrotic cancer tissue). All this sounds good but still no guarantee which I would love to have but won't ever get I guess. I guess the only way I will know for sure is if I am alive years from now.
I get discouraged very easily these days so please nothing but positive vibes...... looking to hear positive and success stories only please!!!! Thank you and hope all is well with each of you!
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Tulips View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2017 at 6:31am
Hi Sara,
I have heard of oligometastatic breast cancer (typically one or a very few small lesions), that may be curable.  The article below discusses it, but you can google for more.  Basically in select cases, they believe aggressive local therapy may totally cure those cases of Stage 4 (estimated to be about 10% of stage 4 cases).  Good luck--sending you positive vibes for sure!

Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2017 at 8:23pm
 I might have said this before, I don' t know anything about the "paratracheal lymph node" but if you doctors think radiation will kill it, this is great news.


You said:
  I just completed 4 rounds of AC, did Pet and it shows now signs of cancer. December pet showed 2 hot spots lighting up the same which were a sub pec 1.5 cm tumor (ended up being 3 lymph nodes) and a paratracheal lymph node 1.5 cm. Pec tumor has been removed. Paratracheal lymph node still there.

Please keep us updated, I don't know how to deal with my wife's cancer going from 3A to Stage 4, but it sounds like your doctors are dealing with it, I know, from a husband's viewpoint, how hard it is to deal with your cancer not being "cured" I want you to know, from everything you posted, it seems like your doctors are trying to prevent your Stage 3 from going to Stage 4, if there is anything else we can do, just post it, I'm sure someone will respnd... Gordon & Elaine...
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Sara0414 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara0414 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2017 at 9:41pm
They won't do radiation because they said it is dead tissue now but I am going to still pursue it with another opinion. They are planning on radiating my chest. The biopsy of paratracheal lymph node is inconclusive due to waiting until after the chemo had started so now they can't say whether it was or wasn't cancer.. They are treating me as Stage 3c because of their error. Hopefully, I am truely stage 3c and got a shot at a cure. Or if the paratracheal lymph node was cancer and being my only tiny spot,, the mestasis was caught early enough and I will still be cured with no further reoccurrences.
Like I said earlier, after the 4 rounds of AC, the pet scan showed no evidence of disease. But I am still having to do 12 more weeks of toxyl and carbo. They said 4 rounds of AC and 12 weeks of toxyl and carbo is standard treatment for tnbc Stage 3. Praying this all works!!!!
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Sara0414 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara0414 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2017 at 11:15am
Tulips, do you know any other members that were Ogliomestatic and had success?
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Tulips View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2017 at 3:53pm
Hi Sara, I can't think of any names from this board, but I have come across a few people in my research.  It's clearly not common (I think since they usually don't do scanning until people are symptomatic now, it is rare to catch it very, very early), but it is possible and there are examples out there.  Good luck.
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2017 at 7:18pm
Hey Sara,

From what I gather you're saying, 123Donna would be a wonderful resource. If you haven't already talked, please do.  She's a love and yours sounds very similar to her case.  She's NED and doing beautifully, BTW! Thumbs Up

You'd probably be much more savvy by running a search of her posts during that time - called Team Donna,  when they caught the recurrence early.

My best to you.
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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mindy555 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2017 at 7:27pm
Wanted to add, Donna's wasn't distant, but I believe singular.  There was some debate that it might have been there originally and they missed it.

Forgive me if her case is completely different from what you're needing as I have no recollection of hearing it called Ogliomestatic.
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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