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African American with TN

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dianjlew View Drop Down
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    Posted: Jul 22 2009 at 7:39am
Good Day,
 
All I have been reading is bad news for African American with TN.  Are there any long time survivors of TN who are black.  Please let me know.  I need some uplifting here!  Thank you.
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sberger View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sberger Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 9:08am
HI,
I'm not sure what month the report came out but breastcancer.org reported a study of white versus black and there is no difference in survival.  There is a difference in early diagnosis and treatment.
DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.
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sberger View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sberger Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 9:20am
I'm sorry to re post.  It was in the ASCO trials that I read about there being no difference in outcome if found early and treated aggressively.   It is just that blacks are more likely to get TNBC and it is difficult but treatable.
DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.
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dianjlew View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dianjlew Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2009 at 5:36am
Thank you sberger for responding. 
It is good is hear about this current study.  Everything I read gives the feeling that African Americans are doomed just because....  I know we all are all out there doing our best.  Sometimes I feel that my best does not matter just because.....
 
Have been treated with 4x A/C and 4x taxol.  radiation is not part of my treatment, but I am thinking of asking my oncologist to include it.  I have expanders and I am not sure where they would treat.  If you have any information on this, please advice.  Thank you. 


Edited by dianjlew - Jul 23 2009 at 5:38am
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newalex View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2009 at 5:52am
hi Sberger
IS that study saying early dx and tx has good prognosis? I cannot find that study. What does the study say?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sberger Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2009 at 9:02am

HI,

I'm sorry there is a recent study in breastcancer.org  You can see it under NEWS and it is the latest study.  The prognosis is the same for white or black for TNBC.  I have read that a few places.  The reason they keep saying it is worse for blacks is because more blacks get TNBC and historically it has been a difficult cancer but that is changing.   Also they site the fact that it is often found later.   Aggressive treatment is the standard for TNBC now.

 
Susan
DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.
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thinkpositive View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2009 at 3:10pm
Hi - I am not African American but have a good friend who has started a foundation   www.triplepink.org.  Karen is a survivor of 3 + years and her cancer has not recurred.  She has an excellent board that includes experts on TN and how it effects the community of young AA women.   She was profiled in Oprah Magazine 2 years ago. 
Please contact her thru her website - a really positive effort.  
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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dianjlew View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dianjlew Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2009 at 6:52am
Thanks ladies.  I will check out the reccommended sites. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ratherBdiving Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:31pm
Hi there -

You asked about rads and said that you have expanders.  I had bilateral mastectomy with expanders.  I'm assuming you have had at least a single mastectomy?  They would not generally do radiation after mastectomy because the point of mastectomy is to remove the cancer tumor and all of the local cells surgically.  There's nothing left to treat with radiation.  The exception would be if it had gotten into your muscle tissue or chest wall but I believe that is fairly rare these days.

Try not to focus on the dx in conjunction with being African American.  TNBC seems to show up more often in Black women but it does affect any nationality and I'm just as scared as you are (white).  ;)  Just treat it aggressively and try to keep a positive attitude.  Best of luck to you!!!

Hugs!
dx 5/09, age 35, IDC TNBC, BRCA-
stage 1, grade 3, 1.2 cm
bi-mx 6/09, expander recon, SNB - neg 0/2
A/C 4x DD, T/Carbo 12 weekly, completed 12/10/09
NED 12/31/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gammy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 8:14pm
Hi dianjlew,
 
I had bilateral mastectomy after 6 treatments of taxatere and during surg. they found another tumor and 3 positve nodes (pet scan only showed 1 tumor and possible limp.node invasion). When i woke up from surg. i found out that i had only one expander because i would need radiation and that it would damage the expander. I was advised by my ono and radiation ono that since the pet scan was incorrect and didn't show the positive nodes or additional tumor that there may be cancer cells left. I had 4  more treatments of cemo (red devil) and 33 treatments of radiation. As of now i'm cancer free.
 
I would talk to your doctor about the radiation. I'm not sure that it's an option since you have both expanders.
 
G-d Bless
 
Sheila
 
P.S. I also have to wait 1 year from my last radiation treatment to get my expander.
 
 
 


Edited by gammy - Jul 31 2009 at 8:31pm
STAGE 3A 5CM TUMOR,TN. FOUND ANOTHER TUMOR AND 3 POSIT. NODES DURING SURG. L/R BRST REMOVED AND 22 NODES. 3MOS CHEMO PRE SURG.3MOS CHEMO POST SURG. 33 TREATMENTS OF RADI. DIAGN.5/08.CANCER FREE 5/09
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