Help the researchers - how?

It seems to me, with the relatively small population of triple negs, that we could help the researchers to identify similarities--through surveys of each other to find out what similarities we have. In the morning Memphis newspaper, there is an article about triple neg being most common in African American women, and in non-breast feeding women. To the website -- is there a research group that we could feed info to as to our lifestyles, our diet, etc.? It seems that everytime I read about triple negative that I don't "fall into" that set of characteristics. Surely there is something strange that we have in common, though. For example, is there a survey that we could fill out to send to researchers? I've heard of the sister study for the more common bc.
Anything similar to that out there for triple negs?

I agree with all this.  I have been trying to find out what other common denominators or differences we all have and even approached a pharmaceutical rep when I noticed him in the lobby of my hospital. 

Edited by lucky - Jun 26 2007 at 8:16am

Hi All....

Grade 3, Stage 2 (4.5 cm) no positive nodes.  Diagnosed 8/02/05 at 43, six rounds of TAC. 

I wish there was a way to spread the word to other triple negs out there about this website and discussion.  We do seem to be a rare breed, but ssclark, you're right: the more we can compare notes with each other to find a common link or denominator, the closer science can come to finding a cure. 

From June 1-5, advances in breast cancer research were reported at the
annual meeting of the American Society of Clinical Oncology (ASCO) in
Chicago. breastcancer.org Professional Advisory Board members Generosa
Grana, M.D., F.A.C.P. and Nicholas Robert, M.D. were there to hear the
latest news.

On Wednesday, June 20, Dr. Grana and Dr. Robert answered your questions about the latest news on breast cancer screening, treatment, side effects, and where breast cancer research might be headed in the next few years. If you missed our Online Conference, you can read the transcript here:
http://www.breastcancer.org/ct_0706.html

Here are just a few of the questions our experts answered:

"I was diagnosed in January with triple-negative breast cancer. I don't
often read promising news regarding treatment of this type of cancer
and would like to hear whether there's anything hopeful on the horizon
for us triple-negative types. Also, I did read that carboplatin
/cisplatin seems to show better survival results for triple-negative breast
cancer; could the expert guests elaborate on that subject?"

I'd go along with starting our own survey, but if one is already out there , then we wouldn't have to COMPLETELY reinvent the wheel.

Edited by Ssclark8267 - Jul 01 2007 at 6:30pm

I have also heard that about Her2 positives.  But I think Herceptin only works for ER/PR positives.  I have a friend who had ER/PR + and Her2 positive. (I wonder why they don't call that triple positive) Her tumor was extremely aggressive, and she took Herceptin for a year after her initial treatments.  Herceptin is reportedly responsible for reducing the likelihood of recurrence by 50%.  (That's amazingly good!)

"then we wouldn't have to COMPLETELY reinvent the wheel. "

Sorry for my complete lack of understanding on this --

My cancer was dx in 05.  I had IDC, grade 3, stage 2b and the surgeon told me it is the Basaloid phenotype.