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What is your ki-67 score and diagnosis?

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Lauralee4060 View Drop Down
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    Posted: Dec 23 2018 at 6:19pm
i know that the ki-67 score is supposed to be a significant prognostic factor now.  Mine is 86%. Anyone have any information/ care to share yours and diagnoses?? Worried. 
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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2018 at 10:33pm
Mine was 96 I think diagnosed as stage 3a at the time. TN usually sees a higher ki-67.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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Lauralee4060 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauralee4060 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 24 2018 at 9:32am
I'm 26, assumed staged 1 at diagnosis due to my pregnancy limiting tests. I still haven't recieved a scan or tumor marker blood test.  I had 2 tumors and no node involvement but i was grade 3 and tn and 86% ki-67. I had necrosis in both tumors and a high micotic ct. 

I had allergic reactions And went to icu during carbo/taxol and during doxirubicin/5flouricil/cesplain. So I've recieve only 2 full treatments.  I had bilateral mastectomy and no further treatment,  because i think theyre afraid to give me anything. Should i be looking at another openion on my current treatment,  which is now wait and see?
I feel like my chances are high for a reacurrence and I'm worried. 


Edited by Lauralee4060 - Dec 24 2018 at 9:34am
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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 24 2018 at 1:51pm
I was 28 at diagnosis and went from stage 1 to 3 in 3 months. I would get another opinion if I were you because you are pregnant. This is such a hard thing to go through and even more so I can only image if pregnant. My opinion is donít delay treatment at all if you can help it. This is a very aggressive cancer and your MO needs to treat it that way. Other BCís are slow growing, but TN is not. Not sure what the treatment options are that are ok for baby though so that could be why the delay.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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Leahstuffle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2018 at 9:17pm
There's a study posted on the chemotherapy part of the forum that gives some insight on when chemotherapy is recommended! I think the answer for TNBC is almost always. I am pregnant now and currently finishing my chemotherapy, and I can say I got a lot of peace of mind from a second opinion. It is highly suggested by lots of members here, and they can help you locate someone in your closest metro area.

That being said, I was diagnosed at 31 this year as stage 3B wirh 3 known lymph nodes and a 16cm tumor. I have less than a cm left that we know of (still pregnant, cannot get scans!) and it's all because of the chemotherapy and the huge amount of work the whole medical team has done.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2018 at 5:57am
Leahstuffe, didn't you see that brilliant Dr. At MD Anderson that specializes in pregnant women with breast cancer? Getting an opinion from her seems like a good idea. Her name escapes me.....
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2018 at 10:14am
Yes!! Jennifer Litton. And she agreed to see me ASAP,  too. I got an appointment within a week of starting the process because they want to be very proactive with pregnant women 
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Lauralee4060 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauralee4060 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2018 at 5:01pm
my baby is 2 months old now. Ibe had 2 full rpunds of chemo and zero scans
 I feel like i am getting under treated. Not once have they said remission, pfr or complete path response. My ki-67 score was high, i was youung, grade 3 and i haven't had any consistent or full treatment besides the double mastectomy.

My fear is with so many unknowns (because i was pregnant and then theyre afraid to treat due to anaphylaxis to who knows whcih chemos considering i was given 2-3 at a time) , am i screwed? Tnbc is aggressive. I grew a whole new tumor in my breast within a span of 2 months while i was pregnant.  

I love my team but i feel like theyre trying to cover their butts at this point 

I dont know what to do


Edited by Lauralee4060 - Dec 28 2018 at 5:04pm
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Leahstuffle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2018 at 6:31pm
I would 100% get a second opinion and probably a third, too. If you think it's the medical oncologist who is not doing everything possible for you, ask your surgeon for a new referral. Look for oncologists at research medical universities. Where are you located? The forum can help you out with suggested medical oncologists.

You should always strive to have care that makes you as confident as possible, and don't forget you're part of the team!! You are a decision maker in this, too!
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