New Posts New Posts RSS Feed - Please Read! Triple Neg & BRCA Statistics
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Please Read! Triple Neg & BRCA Statistics

 Post Reply Post Reply Page  123 5>
Author
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Topic: Please Read! Triple Neg & BRCA Statistics
    Posted: Oct 17 2007 at 4:37pm
Hi Gals,
     I went to see a new onc today and got some answers regarding triple negs, BRCA statistics. This doctor sits on a national breast cancer board, he's supposed to be the best in the area.  I changed onc's because I felt the first gal wasn't giving me the answers I needed and was being too passive with my follow-up (no blood work on my 3 month follow-up).  This doctor specializes with high risk breast cancer.  I spent 2 hours with him asking questions (for us too) I will paraphrase what I got.
 
Q: Are most triple negatives BRCA positive?
A: No.
Q:What is the ratio of triple negative women that are BRCA positive?
A: We don't know.
Q:  If a young woman is triple negative how can she make treatment decisions if she doesn't know her BRCA status?
A: That issue has been discussed and there is a growing concensus that genetic testing needs to be offered more frequently.
Q: Would you have suggested it for me?
A: Yes, because you are young, triple negative, and have an aunt who had breast cancer at a young age.   
Q:  Do they believe triple negative cancer is genetic?
A:  Yes there seems to be other genetic factors involved with triple negatives besides BRCA 1 & 2.  Most African- American women are triple negative/ BRCA negative and because they are seeing a prevalence of triple negative breast cancer in Africa the thinking is there is a genetic connection. 
Q: Do all triple negatives breast cancers have the same risk as BRCA positives for new cancer in the same breast, the other breast or ovaries?
A: No, because we know that African-American women don't have a higher risk of ovarian cancer.
Q: So what about the risk of new cancer in the same breast of the other breast?
A: The risk goes back to the regular breast cancer statistics, however the risk for mets and recurrance is much higher in triple negative.
Q: Is AC+T dose dense still the best way to go with us triple negs enlight of the Taxol study?
A:  Yes, Taxol doesn't work for ER positive
Q:  It seems like women who have neo-adjuvant chemo have an edge on woman who just have adjuvant chemo because you can tell if the chemo works of their tumor?
A: Yes, that's true and often I will use neo-adjuvant for that purpose, if I have a complete pathological response (the tumor shrinks completely) then there is usually a better prognosis
Q:  Can I have hormone replacement therapy (HRT) if I have a double mastectomy and an oopherectomy?
A:  Yes, the risk of hormone replacement is in growing a new breast cancer if you have no breasts the risk is eliminated, however the HRT risks are the same, a small risk of stroke.
Q: So I don't have to worry about it fueling any possible mets?
A: No
 
     From what I understand they have pretty solid statistics on BRCA's and their odds for new cancers, as for the other unknown triple negative genetic lines, they just don't know so the regular statistics stand .  It shows the importance of knowing your BRCA status when making treatment decisions, whether your insurance company thinks so is a different matter.
 
Ronda
 
 


Edited by Ronda - Oct 22 2007 at 5:39pm
Back to Top
Liliana View Drop Down
Groupie
Groupie
Avatar

Joined: Oct 13 2007
Location: United States
Status: Offline
Points: 90
Post Options Post Options   Thanks (0) Thanks(0)   Quote Liliana Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2007 at 5:39pm
Interesting, thanks!
Liliana
Back to Top
CalGal View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 04 2007
Location: United States
Status: Offline
Points: 159
Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 6:02am
Hi Ronda -

Very interesting Q & A with that doctor.  

Thanks,

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
Back to Top
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 10:23am
I forgot to add:   I also spoke to him about sentinel node biopsies.  He said they are about 90% effective. 
Back to Top
boppy View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 11 2007
Location: United States
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote boppy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 10:24am
So how does that jive with the Kendal study (Aug 2006) saying 80% of triple neg BC's are BRCA pos?
Back to Top
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 11:23am
Hi Boppy,  
    I tried to find that study, but couldn't.  I'm speculating that it said  "80% of BRCA 1's are triple negative".  They don't genetically test everyone who is triple negative so they don't have anyway of getting the other statistic.  I didn't know that African American women were mostly BRCA negative.  With all the press surrounding triple negatives and  women of color you would think they would be BRCA positive.  Even though all of us triple negatives are high risk it seems to me that highest group at risk are those who are triple negative and don't know that they are also BRCA positive. 
 
The thought plickens
 
Ronda
Back to Top
boppy View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 11 2007
Location: United States
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote boppy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 12:31pm
Hi Rhonda,

Thank you so much for sharing all you've learned. My system won't allow me to copy the link to the article, so i'm going to cut and paste the first few lines. I misspelled the author's name; it's Kandel, not Kendal. Here you go:

Prevalence of BRCA1 mutations in triple negative breast cancer (BC)
M. J. Kandel, Z. Stadler, S. Masciari, L. Collins, S. Schnitt, L. Harris, A. Miron, A. Richardson and J. E. Garber
Dana-Farber Cancer Institute, Boston, MA; Beth Israel Deaconess Medical Center, Boston, MA; Brigham and Women’s Hospital, Boston, MA

508

Background: 90% of BCs in women with germline BRCA1 mutations are ER, PR and HER2 negative (so-called "Triple Negatives"), and 80–90% of triple negative BCs are "basal-like" by DNA microarray and IHC analysis. Prevalence of germline BRCA1 mutations among women with triple negative BC may therefore, be elevated, and underestimated by available calculation models, which do not take tumor features into account.

Bobby here again. I recommend googling for the article and reading the entire thing. I find it quite compelling.
Back to Top
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 1:29pm
Hi Bobby,  I found it!  I think what it is saying is that 90% of BRCA 1's are triple negative, with 80-90% of triple negatives being basal like.  What it did say was that in using Myriads table for predicticting how many BRCA positives there were in this group was incorrect, the amount was actually much higher at 39%.  So 39% of 200 triple negative women turned out to be BRCA positive.  I think that's what it said!  This is so confusing! But here's the link if anyone else wants a crack at it!
Ronda
Back to Top
boppy View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 11 2007
Location: United States
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote boppy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 2:55pm
So Rhonda, do you think this means that the average BRCA1+ has about a 20% chance of getting triple neg BC? Does anyone understand this stuff?
Back to Top
shellieh51 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Oct 10 2007
Location: United States
Status: Offline
Points: 218
Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 3:00pm

Thanks for the information.  I will try to remember what I need to ask when I meet with the genetic counselors on Monday for the results of my tests.  If anyone can think of questions I should ask, please let me know.  I hadn't had a definitive answer if insurance paid for the testing but checked the claim status and it had been paid so...  My onco wasn't that concerned about genetic testing so I went to the top gyn oncologist at the facility and she arranged the appointment with the counseling group.  Maternal grandmother with BC, maternal grandfather died of bladder cancer.  Dad's side is jackpot - he had melanoma, bile duct cancer and prostate.  Paternal GM died of colon cancer.  The genetic folks were more interested in my dad's side.  I'll keep you all posted.  Tomorrow is the parotid appointment with ENT - tumor discovered there when the PET was done during BC diagnosis.  And the hits keep coming LOL

Back to Top
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 3:29pm
Hi Bobby, 
     BRCA 1 means you have a significantly higher chance of developing breast cancer (usually triple negative) than the average population.  In addition you have an increased chance of having more than one breast cancer in a lifetime and also an increased chance of ovarian cancer.  The reason knowing your BRCA status is important is so you can make informed treatment decisions.  If you are BRCA 1  you can get new cancer, not just recurrance from the first cancer and you have a greater risk for ovarian cancer.  Another reason for having this information is for our siblings and children.  If you are BRCA positive, they can be tested for ALOT less and they can take preventative measures before they actually get cancer.
 
For specific statistics try
 
 
 
Ronda
Back to Top
PineHouse View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 05 2007
Location: Los Angeles
Status: Offline
Points: 191
Post Options Post Options   Thanks (0) Thanks(0)   Quote PineHouse Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 6:18pm
Ronda,
 
Great info!  Certainly clarified a lot of things.  Thanks for posting it.
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/
Back to Top
Skippy123 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2007
Location: United States
Status: Offline
Points: 101
Post Options Post Options   Thanks (0) Thanks(0)   Quote Skippy123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2007 at 3:38am
I was told from day 1...
 
Neo-adjuvant treatment recommended for several reasons, but one big reason was to get the BRCA1/2 testing done.  Family history was considered but only during genetic counseling and I have no history!  It's as if the BRCA testing was suggested no matter what.  My surgeon didn't want to speculate about kind of surgery until we had test results.  My blood was taken and sent to Myriad two weeks after chemo started. 
 
My point...BRCA 1/2 information seemed important to my cancer team.  Of course it was my choice, but I wanted to know also.  I NEVER felt pressured by them to have the testing.  I'm glad they (cancer team) recommended testing from the beginning.  My test results were one more piece of this puzzle!
Skippy in Austin

Dx July 2007
IDC, Stage II?
Triple Neg
BRCA 1/2 Neg
A/C August - October 2007
Taxol October - December 2007
Lumpectomy Jan/Feb - 2008
node negative
Finished rads April 2008
Back to Top
boppy View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 11 2007
Location: United States
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote boppy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2007 at 3:46am
Ladies, you are so brave. Why do you think genetic counselors are not telling BRCA positives about triple negative risks? I was given BRCA1+ status last year, and only now finding out about this from my own digging. Can they be afraid to further overwhelm us? If I had known this earlier, my PBM decision, now planned for Dec 07, would have been a lot easier to make.

Edited by boppy - Oct 19 2007 at 3:46am
Back to Top
Nancy View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3814
Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2007 at 7:14am
Hi Skippy,
 
Lori and I have been talking as to why she didn't have neoadjuvant therapy, but I am still somewhat confused. Was it becuase the first surgeon went in assuming the tumor was a cyst, and...as we discussed...there was a second tumor under the nipple area, which was not found until the MRI was done? So many of you have had neoadjuvant therapy. The second tumor was a branch of the first or...could it have been the other way around? I guess we will never know.
 
Lori has told Magee (Pittsburgh) that she will be in any study they conduct.
 
She wants to wait until after the chemo and rads to have the BRCA testing done, but if she is positive for BRCA then she will have to make those decisions that so many of you have made. Is it possible to have the testing done while she is taking chemo?
 
My husband's sister had bc 12 or 13 years ago. She said it was the "fast growing" kind. Of course we don't know her path report. And...I believe that she has early stage dementia, so it has been very difficult to impress on her the importance of Lori knowing her dx. She was over 50 when she was dx.
 
Thanks,
Nancy
Back to Top
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2007 at 1:22pm

Hi Skippy, 

   It sounds like you have a great team set up.  Between them and your nutritionist you've got everybase covered.  Neo-adjuvant treatment, BRCA testing, chemo, surgery, nutrition, this should be the model all doctors follow when dealing with this crap.  I didn't find this site until the middle of my treatment, if I had found it before surgery, I would have done things way different. Your treatment model would give us all the greatest chance to survive the cancer and the treatment because your doctors (and probably this site too!) gave you the information you needed to make informed decisions and are giving you the freedom to heal yourself during your chemo.  Hats off to you and your team!

Ronda
Back to Top
Skippy123 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2007
Location: United States
Status: Offline
Points: 101
Post Options Post Options   Thanks (0) Thanks(0)   Quote Skippy123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2007 at 4:13am

Ronda,

So far so good.  I have yet to tackle the next big issue...breast surgery.  Lumpectomy?  Mastectomy?  Don't know what they will say or recommend.  Since I'm BRCA 1/2 negative, what are the stats on recurrence? 
 
After that, how my oncologist wants to procede with scans, MRI's, etc is another issue that I've yet to "rate" them on.  The nutritional oncologist has a plan for after treatment, but the big test will be how the onc wants to monitor recurrence.  I'm going to sweat next year. 
 
I don't know what I would do without this site, the words of wisdom and information from you all are so critical.  I visit this site at least once a day.  I feel really confident in my cancer team right now, but I'm still in search of answers they don't have.  I just feel really good about how things have played out with treatment so far. 
 
Ironically, no one on my cancer team has talked to me about how serious and mysterious this disease really is.  I have concluded this through information from you all and other internet postings. 
 
 
Skippy in Austin

Dx July 2007
IDC, Stage II?
Triple Neg
BRCA 1/2 Neg
A/C August - October 2007
Taxol October - December 2007
Lumpectomy Jan/Feb - 2008
node negative
Finished rads April 2008
Back to Top
shellieh51 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Oct 10 2007
Location: United States
Status: Offline
Points: 218
Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2007 at 4:42am
I will try to remember to ask that question when I meet with the genetic counselors on Monday - I just want this to be over with so I can move forward.  I thought testing after chemo was a little behind the cart but was assured that the first goal is to get a patient into treatment.
 
I met with the ENT regarding the Parotid tumor situation.   He wants to remove it within the next 3-6 months.  I told him it would depend upon the BRCA results and he was good with that.  The tumor is benign but there are complications if it continues to grow.  He said they are drawing a correlation between parotid tumors and BC.  I found one small study about this last December but he said it is becoming more prevalent.  Has anyone heard about this?
Back to Top
Ronda View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 31 2007
Location: United States
Status: Offline
Points: 587
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2007 at 7:16am
Hi Skippy,
     I found my stats  from Adjuvant on-line (your onc has access to this and can give you a print out for your tumor size) here's what mine said.  This did not take into account BRCA status.  This is used to help people decide about chemo.  I don't know if I buy it though, because these people are selling something and "how many years did they give all those poor, numb footed, er positive woman Taxol??"  I feel like Adjuvant Online is an easy tool that makes a complicated issue seem simple and it gets "question-askers" off the backs of the oncs.  When I asked to see all the studies used to determine these numbers (they must be out there if these stats are being spit out, right?) they didn't have the information.  When reading studies on my own, it actually seem like recurrance is higher for triple negatives regardless of the treatment, node status etc.  
     Woman are fortunately living longer with this disease, but my decisions are based on trying to eliminate my chance for new cancer in the future and catching recurrance or mets early.  If these were tonsils or even testicles this would be a no brainer.   "Self mutilation"  "defeminization" labels seem to follow this issue usually from people (like I used to be) who don't understand this disease .  We all have to make our choices trusting our own instincts on whats right for us.  The worst odds still have winners and the best odds still have losers.  The problem with BRCA negative is you don't have as much compelling information and BRCA positives do.  Also I'm not convinced that stats given on lump vs. mast are accurate re: triple negs. and it maybe they are being skewed by undiscovered BRCA's in the mix, who knows. You just have to do what's right for you and don't look back!
 
Good Luck
Ronda
 
 
With third generation chemo (dose dense)
Tumor size 2.1-3cm.
Estrogen receptor negative
Node Negative
Histoligic Grade 3
 
Alive without caner in 10 years 78%  (without out chemo it drops to 56%)
22% relapse (43% without chemo)
1% will die of other causes.
 
 
Back to Top
Skippy123 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2007
Location: United States
Status: Offline
Points: 101
Post Options Post Options   Thanks (0) Thanks(0)   Quote Skippy123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2007 at 4:59pm
I believe in another BRCA gene.  My onc's nurse practitioner was right...being negative just made this a bigger mystery. 
 
 
Skippy in Austin

Dx July 2007
IDC, Stage II?
Triple Neg
BRCA 1/2 Neg
A/C August - October 2007
Taxol October - December 2007
Lumpectomy Jan/Feb - 2008
node negative
Finished rads April 2008
Back to Top
 Post Reply Post Reply Page  123 5>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.