BRCA 1 and TNBC - Anyone out there?

My mother had breast cancer at 34, that's how my sister and I knew we'd need to stay on top of our breast health. Many years passed and life continued.

My sister at 29 was diagnosed with stage 3 breast cancer. 18 of 24 nodes were positive. At that time she took the test and tested positive for the BRCA1 genetic mutation. I was 27 at the time and scared as heck to face something as scary as the test. Well 2 years ago I took the test and it came back positive. I was really sad that day because I had hoped I would be the lucky one.

Now two years later I just had my own battle with breast cancer. Because I knew I carried the gene I had a doctor who was aggressively monitoring my breasts. So every 6 months I had an MRI, and the last one caught it. Three tiny tumors that ended being cancer.

Thank god that text is available because I would have just Barrie's my head in the sand.

Thank you. I am all done with my treatment. Thank god!



My sister is a 6 year breast cancer survivor. She is doing great.

Cancer came as shock to my mother as well. None of her relatives tested positive for the gene. The ones alive to take the test. My fathers family no gene no cancer.



How old we're you when your were diagnosed? And what is the main difference between 1&2?

Hello, thought I would post here since I'm newly diagnosed TNBC and also BRCA1 positive. I'm doing 4 rounds dose dense A/C followd by 4 rounds of Taxol with MX to follow. My surgeon wants me to wait 6 months after I finish treatment before we do the othe breast. I plan to also have ovaries out too.

Brca women - please inquire with your MO's about getting Carboplatin too.  There are clinical trials going on right now about using platins with brca cancers.  They seem to behave like ovarian cancers (they use Taxol and Carboplatin).  My MO Rx'd it after A/C and T (dose dense).  I feel darn lucky.

For chemo, I had AC dose dense, then Taxol dose dense, then my MO ( at a teaching hospital) adds carboplatin at the end.  Six times, once a week.  This was for my BC...the ooph was prophylactic.  I am brca2+.

http://www.hccpjournal.com/content/7/1/8

I just did a search to find the first article that came up.  You might do your own search if you think it applies to you (for something more current).  I would help, but leaving my computer for awhile.  I know they are doing clinical trials at this time on Platins and brca, so my MO giving this to me was him "going off the reservation" (in his own words).  The Carboplatin, as given, was very easily tolerated compared to the A/C or T.

Love your comments Dus10!  Here's to life!!! Enjoy every day!

Susan - not TNB or brca1, but I am brca2.  I'm curious...you said you had a bmx in 2010, but came up with BC in the non-cancer breast 2 years later??  I know there is a chance that breast tissue cannot be completely removed and there is still a risk for BC, but fairly low.  Did I read your post correctly?

Susan - I'm really on high alert with your post as I had a mass in my clean breast (though I had a prophy MX on that side) too, like you.  After US and biopsy, it proved to be a surgical abnormality, but I just reread your original post again to make sure I understood.  You said a "routine followup petscan?"  Is there a reason you are getting a routine petscan?  Is this because you are TNBC or because of your BRCA status??  I did get a petscan with my original dx, but they had no inclination to do one (or so it seemed) until I showed up brca2+.  Perhaps they would have done one later when I got my oncotype (high) results and maybe they always do petscans with TNBC?   Also, I was told a petscan would not pick up anything smaller than 4mm, yet yours showed up at 1.2mm?  I assume you are saying they can't determine the Sentinnel node in the case of you recent tumor?

So sorry you have to go through radiation and chemo again...though this is a very small tumor, thankfully... and are they sure it isn't recurrence??  Do you mind me asking what part of your breast the second tumor showed up in?  Do you keep your implants?

Kam170 - they are calling it a "second primary diagnosis" since the 2nd tumor was in the right breast (lower front - near my incision from the mastectomy).    First tumor was on the side of my left breast.     My dr suggested routine follow-up petscans because of my BRCA1 diagnosis.   Had one six months after my initial diagnosis then we were doing annually.   Thank goodness otherwise I don't think it would have been discovered so early.  My implants have not been an issue for my current course of treatment (again - thank goodness!).  Same surgeon did my mastectomy as well as my recent biopsy; she told me that a lymph node dissection could not be done once the breasts are removed.   And they did not do a dissection on the right side previously since the initial tumor was on the left side / nothing appeared in the petscan on the right.      

Journey:  Thank you for your post -- I am going to make my appointment this week, and if I'm a carrier will also select the ooph.

JColford:  Why did they recommend an MRI?  Was that of the whole body?  

I'm having a surgery on Mar 13th to remove scar tissue at base of right implant.  The us/mammo showed nothing suspicious in Oct, but I was given a 6-month return note.  I instead waited only until Jan and had an MRI - I didn't want to wait 6-months.  The MRI came back as nothing to suggest malignancy, but again, was also put on a return follow-up with us/mammo in a short-term interval.  Obviously, I can't live like that, going and wondering from appointment to procedure each time, so I called my plastic surgeon for assistance.  I sensed some hesitation from the breast surgeon's office, I think because the report stated "nothing to suggest malignancy" on the MRI.  My plastic surgeon also previously felt/reviewed the area and think it is scar tissue or the sling for my implant has folded over.  At any rate, he and I decided I needed closure on this, so he is doing the surgery.  He also has other things he can do while in there. I have other scar tissue, not visible, but he wants to clean up a bit, and he thinks one of my implants rotated around, from back to front.  Must be the wild swinging from the chandelier that I've been doing ... not!  LOL  )

It is a scary road for sure.  I have reached my 1-year healthy victory on Jan 4th (we don't ever use the c word in our house now).  It is stressful some days, yet some days I hardly think about it.  But it is always in the back of my mind, such as when I can't eat something that I want.  Or when I have to go exercise, under extreme protest.  I exercised 2 hours today to put some time into the bank, in case later in the week I want to do less. 

I'm so glad you are all on here.  At times I think it is hard for others to understand why I worry a little, or why I am excessive about the eating and fitness.  I drive myself crazy.  Do I stay with low-fat diet, and then add in the low-alkaline diet?  Do I aim for the modified Mediterranean diet?  Or do I follow the low-gylcemic one?  

I would like to mention, that I'm so glad everyone is so pro-active about their health.  If it turns out that I'm not a BRCA carrier, I might still do the ooph, if I can get it approved with insurance.  

I wish everyone a great day - and extra hugs for anyone who is feeling a little anxious today.  Hang in there, it'll get better!

jcolford  - As far as radiation, and not having it, what "gray area" are you in?  It was my understanding that all women with node involvement get radiation.

Jcolford - maybe some one else can chime in here...most of the people that I know who had TNBC and nodes (even some without nodes) received radiation. However they all did have lumpectomies not mastectomies. If you would feel more comfortable with radiation maybe you could try talking it over with your onc (based on your bs comments to you. I guess they don't like to do radiation unless they have to (as there is a lifetime limit). It is like you still have it in the bank in case you need it.

I called my bs to request a second opinion and now I am just waiting for an appointment.