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how many are we?

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Topic: how many are we?
Posted By: JaneRA
Subject: how many are we?
Date Posted: Jul 05 2007 at 3:14am
It is amazing that no one seems to be able to estimate how many actually have triple negative breast cancer. I have seen reputable estimates ranging from 10-25%, with most hovering around 15%. Whichever figure is right we are a sizeable minority, a much larger minority than another minority IBC (Inflammatory Breast Cancer).
 
Jane


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Jane



Replies:
Posted By: trip2
Date Posted: Jul 05 2007 at 3:21am
Hi Jane, I wonder if there is somewhere online we could go to get a percentage on all types which of course would include trip negs but then it would probably be old info.  Wish they would post this yearly so we could see what if any improvements, ups, downs, that sort of thing.  Seems it would help overall.
You are right, we are a sizable minority but so ignored, that has to change!


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Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: JaneRA
Date Posted: Jul 05 2007 at 3:26am
Hi Trip
 
 
I don't think they yet collect stats by type of bc in this way. Recent Susan Love article in Mamm  http://www.mamm.com - www.mamm.com
identifies 5 broad types of breast cancer of which triple negative is one...so maybe they will start counting in this way. (maybe they already do in the US but don't think they do in UK.)
 
Jane
 


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Jane


Posted By: trip2
Date Posted: Jul 05 2007 at 4:28am
Ok thanks Jane for the information and I am already a subscriber to that magazine, really like it!
I wonder why they don't count by diagnosis per year and the types, hmm.
It seems like this would be compiled somewhere, they know approximately how many per year are diagnosed?
Well let's keep an eye out,
 


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Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: JaneRA
Date Posted: Jul 05 2007 at 4:52am
Just looked back to the Mamm article and actually it doesn't explain the 5 types so here goes:
 
Basically it is very recently that scientists have begun to classify breast cancers into 5 different sub types based on the peculiar gene expressions of each, and related to er, pr and her2/neu
 
The five types are:
 
luminal A:         er+ pr+ her2-     more likely to respond to hormone treatment and/or be lower grade tunours
 
luminal B: er+ pr+ her2-   more aggressive than A type, may do better with chemo
 
 
er+ pr+ her2+      will/may respond to hormonals, chemo and herceptin
 
 
er- pr- her2+        will/may respond chemo and herceptin. Possibly as a group the 'most aggressive'
 
 
triple negative      us er- pr- her2-
 
 
 
The reason I guess stats not being collected around these types is because the research and evidence is so new and there is not yet even agreement that these 5 sub types of breast cancer really do exist as discrete types.
 
 
Jane


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Jane


Posted By: trip2
Date Posted: Jul 05 2007 at 6:00am
Jane thank you so much for posting this information.  I have my new Mamm mag but haven't had a chance to read it yet.
This is all very interesting, appreciate it!
 


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Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Joan2844
Date Posted: Jul 07 2007 at 4:22pm
er- pr- her2+        will/may respond chemo and herceptin. Possibly as a group the 'most aggressive'

Does this mean that trip-neg is not the most aggressive? Nice to hear, for a change.


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9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda.
4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa.

NED since May 2008 :-)
www.wow-matt14.blogspot.com


Posted By: lucky
Date Posted: Jul 07 2007 at 9:33pm
Hi,
 
I asked my oncologist about the stats on triple negatives.  He said that the  cancer registry hasn't been keeping those stats,  but the info is available from each hospital.
 
Maybe the cancer registry in each person's country or State has that info.


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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???


Posted By: JaneRA
Date Posted: Jul 08 2007 at 12:36am
For Joan...and anyone else interested in 'most aggressive'.
 
 
I think we should be wary of talking up triple negative or any other kind of cancer to be the 'most aggressive'. This is to an extent what happened during the herceptin controversy in the UK...with papers headling that her2 cancers were the 'most aggressive.'
 
 
The reality is much more complex. I listed the five broad types of breast cancer by er pr her2 status and my comments about 'aggresssiveness' were intended as guides on groups of cancers, not prescriptions abot individual cancers. Many factors determine aggresssivness...and node involvement and vascular invasion are key fcators irrespective of cancer type. Not everyone with triple negative cancer is diagnosed at stage 3...no all triple negative cancers are alike..or any other kind of breast cancer.
 
 
IBC inflammatory breast cancer, as  a special type, is probably the most aggressive kind of breast cancer irrespective of er pr her2 status.
 
An er- pr- her2+ breast cancer which doesn't respond to herceptin is a a very aggressive cancer.
 
Jane


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Jane


Posted By: trip2
Date Posted: Jul 08 2007 at 4:09am
You are right Jane, we are all individuals with our own pathology and bodies and everyone responds in their way with their situation so it is sort of hard to lump some things into one stat.  But I think it is good to have a general idea of each type of bc for information purposes, like a starting point.
 
 
 
Lucky, I posted a link yesterday about a study or trial, can't remember it is early, but they referred to patients in that State's cancer registry.  I thought when I read that that maybe each state has something of this type.  I will look into it and let you know.
 
 


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Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: lucky
Date Posted: Jul 08 2007 at 11:54am
Thanks trip - it's appreciated!!  
 
 
Originally posted by trip2 trip2 wrote:

 
Lucky, I posted a link yesterday about a study or trial, can't remember it is early, but they referred to patients in that State's cancer registry.  I thought when I read that that maybe each state has something of this type.  I will look into it and let you know.
 
 


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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???


Posted By: trip2
Date Posted: Jul 09 2007 at 3:03am
Lucky yesterday I posted two links that will lead you to State information in the US but I'm not sure about Canada.  Surely they have some kind of registry?

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Stage 2 2003
Stage 1 2007
BRCA 1+



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