Hello All! Newly Diagnosed Newbie Here!

Hi minniemouse,

Good luck with your treatments..I hope you feel better soon.

I will send you a PM with the info on the conference....

The main focus of the conference is for women who are BRCA+ and/or at high-risk for breast/ovarian cancer. One of the authors, Dr. Steve Narod, of the study I posted about previously will be presenting at the conference. I will put the link and abstract here again and maybe Pam/Nancy can make it "hot". I know that Dr. Narod is an expert on BRCA. I do not know if he is an expert on TNBC.

Everything at this conference above is geared to laypeople and many of the women there are BRCA1+ and have had or have TNBC. I think 85% of BRCA1+ women who have breast cancer have TNBC.

The Narod study of TNBC women who didn't qualify for BRCA testing but nevertheless 11% of them tested positive. I think it is absolutely imperative that TNBC women are informed of the link between BRCA(especially BRCA1) and TNBC..from reading a lot of posts here, certainly many women have tested...I assume (always dangerous to do) most of them have a profound family history pf breast/ovarian cancer but many do not mention it and perhaps have not been informed. Also, many physicians, still, unfortunately, have not heard of BRCA and if they have they do not know that it can be passed from a father, with no cancer, to his child...who then gets TNBC cancer as was the case with my 36 year old daughter.

I will be going to another conference that will definitely cover TNBC that will be in Orlando May 29-June 2. I will be going as part of an Advocacy training program because I want to become more knowledgeable about
cancer. It is the American Society of Clinical Oncologists annual meeting
and it will be very technical from what I have been told...I have to do a lot of reading and attend webinars before and it sounds like it will be particularly intense. My main mission in going is to find out more about TNBC and also prostate cancer. In fact I will post what I find out from some of the sessions here if it's o.k. with Pam/Nancy.

Narod group study-

http://www.ncbi.nlm.nih.gov/pubmed/19298662?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

BMC Cancer. 2009 Mar 19;9:86. Links
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer.

Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA.
Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com
BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.

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the ASCO meeting

http://www.asco.org/ASCOv2/Meetings/ASCO+Annual+Meeting

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all the best,

Steve




Edited by steve - May 07 2009 at 7:00am

Steve this is so exciting to see you will be going to these conferences.  Oh my my the information will be everywhere, you lucky man!

We would love to hear anything that you would like to pass along.  We love news.

I would like to know how you feel about women or men posting their BRCA status in forums online.  I hear that it is not a good idea?

Edited by trip2 - May 07 2009 at 4:30pm

Thank you so much for this website.

I had surgery 3 years ago in Japan (stage 2a, lymph x1) and got chemo (AC x 4).
3 years later, my cancer moved to my right lung (x 1) and lymph node (x 2), march 09. so I will have Taxotere from next Monday.
I am really afraid about...."Is Taxotere effective for my situation (return of cancer for TNBC?)?"

I would like to know the latest way what kind of chemo in the US for my situation. As far as I know , I can not get the latest way here in Japan because of "drug lag".

thanks for reading

big hug
Melissa

Hello Melissa in JPN, it is so nice to have you join our forum although I very sorry to see you've been diagnosed.

Edited by trip2 - May 08 2009 at 6:34pm

good luck on Monday, Pam...

enjoy your w/e

thanks for the kind words..much appreciated..

all the best,

Steve

Hi! Dawn.

Thank you for your kind message.
I'm asking third opinion to the Hospital in Houston.(maybe same of your's )

I will let you know my situation after my first chemo.
thank you.

hugs to you
Melissa

Dear Melissa,

I am new here but I will try to help you

on the top of the posts in the middle there is something called TNBCF forums...click on that and you will see a page with the different forums
scrolling down you will see "TNBC Metastasis/Recurrence Users"

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I am not a medical professional/doctor but I feel that M.D. Anderson Hospital (which consistently is ranked as the number one cancer hospital in the U.S.) in Houston is a VERY important facility for second/third opinions. They are set-up in a very professional way to do this. I was there a year ago with a dear friend (age 42) who had colon cancer and their opinion was different than his doctor in Las Vegas. He followed their advice and is doing well..One of the most difficult things for a patient is when you have conflicting advice and have to choose especially if your original doctor does not agree and makes you feel bad for even thinking about it. I don't know the customs in Japan but in Hong Kong (my daughter-in-law's parents are Hong Kong Chinese) if you go to another doctor for a second opinion you may actually lose the first..it's an awful system. Stay strong, please, and see what M.D. Anderson(if that's the place) has to say.

I wish you the best of luck as you fight...

all the best,

Steve

p.s. the other thing that is important is that M.D. Anderson is always doing a lot of clinical trials on new drugs and that may help you as well..
Melissa, there are no guarantees in all of this but I think you owe it to yourself to try to be your own advocate..seek different advice (from excellent sources) and then decide on a plan.

Hello Honeydew Newbie. I see you are from BC. I am from Kelowna, BC and was diagnosed with state 2a tnbc March 10/09. This is when the biopsy was done. I also had a normal mammogram in Nov 08 and found an enlarged lymph node early Feb 09. Now I see my mammogram showed dense breasts which is much higher risk for cancer especially as I am 53. All I got was a report that said come back in 2 years. I came to MD Anderson on Mar 5/09 and started chemo on Mar 13/09. 12 weeks of taxol to be followed by 4 cycles of FAC every 3 weeks, then surgery and if anything positive radiation. After 7 weekly treatments of taxol the breast tumor shrank by 47%. I do not know if this is great or not but glad it is at least responding. It started out at 1.7 cm. It was impossible to feel the lump in the breast and even the docs here could not feel it so they have said the lymph node may be what saved my life. I only hope and pray that it is not spread to multiple lymph nodes but there is no way of telling until after surgery. They said here that by doing chemo first they can tell if the tumor is responding. If it was not they would switch me to a different chemo. I will be here in Houston until June 5th and then traveling back and forth after that. I am very interested in the conferences you are talking about Steve? Do you know if there are any clinical trials for post treatment tnbc to prevent recurrence??
Donna

Hi Babs and welcome to our forum, it is so nice to have you join although not so good you have to deal with cancer.

Dear Donna,

keeping track of clinical trials is a daunting task even for a breast oncologist/researcher (I know several who are swamped trying to keep up) and as a layperson I am about a million miles away from a professional's perspective but I am ineptly trying to make headway and be a bit more knowledgeable about things...I am particularly interested in the BRCA mutation and TNBC.

Pam has given you some very good links and I have two more to add-

www.breastcancertrials.org. (there is a lengthy registration process but hang in there it is an excellent site).

http://ww5.komen.org/BreastCancer/ClinicalTrials.html

Unfortunately, from my experience, it is necessary to become one's advocate and it can be a draining process. All I can tell you is that Pam is fabulous and I will try my best, as well, to be informative..

In the meantime, my prayers are with you as you fight the fight. You are doing so at an excellent facility..

all the best,

Steve