BRCA 1 and TNBC - Anyone out there?

Am going in for genetic testing the end of July. What is BMX?  Thanks!

I have a deletion of exons 13-15 on my BRCA1 gene, and I'm Triple Negative. My mother had breast cancer twice (once in 1993 and once in 2005), and her doctors gave her the BRCA test back in 2007.  The problem was that they only tested the first level, not the second, and her results came back with a negative result. So my sisters and I thought we were in the clear, at least for that particular gene.

Well, when I was diagnosed back in May, the genetic counselor suggested that I should have the test anyway, and made sure they ran the second level as well. And of course, the deletion shows up on the second level. Here's an article that sums up the total scam the company who "owns" the test is running...so horrible! http://www.cnn.com/2011/10/27/health/brca-genetic-testing-ep/index.html

Anyway, just had my BMX on June 15th and will be meeting with an oncologist soon to discuss follow-up treatments.  It's expected I will have chemo, but probably not radiation. I will also be getting a hysterectomy at some point, most likely around age 40 (I'm 34 right now). I want to get as much health benefit from my ovaries as possible before their removal. 

Good luck to all you ladies!! 

So, I'm about to start my chemo and was wondering what, if any, chemo regimens you other BRCA+ Triple Negative gals have done?  I chose the 4xAC (every other week) followed by 12 weekly Taxol treatments. My other option was 6xTC (every three weeks). I read somewhere that AC works better on BRCA positive TN's?  But I also read that MD Anderson has been starting with Taxol and ending with AC on TN's since 2009...when I asked if I could do that, my oncologist nearly had a heart attack with her negative reaction! I thought that was a little weird, considering MD Anderson is considered pretty knowledgable with all this stuff. I like doctors to be open to knew research, but I think Kaiser plays by the book, period  Other than that I love them.

Nice to know...is there a specifica name of this sort of "robotic" hysterectomy?

Hi maa764

Firstly my total sympathy for what you are going through right now. It sounds, like me, you have a strong family history (my mum had ovarian, her sister had BC and her brother had pancreatic cancer). I was diagnosed with Basal TN IDC in 2009 and had a lumpectomy on Jan 2010 following nil response to neoadjuvant chemo. My Oncologist was keen that I should have BOTH breast removed but my surgeon was optimistic 'we've caught it early and you'll be fine now'. My Oncologist tested me for the BRCA mutation and I was found to have a mutation in BRCA1 of 'unknown significance' so no formal medical reason to have both breast removed. As the tumour was the size it was, I just had the lumpectomy and that was that. I had my first annual mammo in Jan 2011 (we have annual mammos in the UK). It was clean. By summer 2011 I felt a pain in my other breast which I thought might be coming from my ribs. I lay on my bed with a silky nightie on and my fingers could then run easily over the area that hurt. Sure enough - a raised area. I waited to check for changes and it got bigger in that time. I called the surgeon and had a mammo and ultrasound and they were CLEAR. I was told it was NOTHING and that the pain was a GOOD sign! As I had a cancer diagnosis before, they reluctatnly carried out a biospy. To cut a long story short they found 4cm of grade three DCIS (they knew this after the breast was removed as it was invisible to scans). They told me that 20% of BC is invisible to scans and it is often the 'fast moving' cancers with little / no calcifications. I have since found out that there is a 25% chance of contralateral BC (cancer in other breast) if you have a BRCA1 mutation. My mutation is of unknown significance of course, but my Oncologist said they are now treating me as BRCA1. Please be aware that if you have a strong family history / BRCA mutation then you are at high risk of BC in the other breast. I caught this cancer early and as it was invisible to scans - I probably saved my own life. In my case, the original Oncologist back in 2009 was correct and I should have had a bilateral mast then. Hindsight is a wonderful thing!! That same surgeon who, in Dec 2009 said it was folly to have both my breasts removed was urging me in Oct 2011 to have the operation. He said that my breast tissue had just 'gone bad' and that 'it seem that it will just keep coming back'. So, if you are just going to settle for the lumpectomy PLEASE be vigilent! Know  your own body and detect any changes early. Most importantly do NOT think that just because you have had a clean mammo and ultrasound that you are O.K. I have now had both my breasts removed (without reconstruction) and I am totally happy with that decision. I figured that life is so much more important than my boobs - even though they were nice and perky! Good luck in whatever decision you make maa764 and I hope my story helps in some way. By that way, I did not tolerate chemo well at all so the fact that my second diagnosis was DCIS was a real blessing.

maa764 - I'm so sorry for all you have been through If it were me, I'd let my body heal from the chemo then go in for the double mastectomy afterwards. I just won't let my boobs stand in the way of my health. And fear of it coming back in the other breast caused me to make the BMX decision for myself. I have lots of life left, I don't want to spend any significant portion of it in fear.

I also have a question...did your sister do adjuvant (post-surgical) chemo after her BMX and reconstruction?

Tiffany-

I am BRCA 1 + as well as TN. I had BMX with ADRO/Taxol for my chemo. I finished treatment Sept. 2010. I only have blood work every 4-6 mo. but had chest x-ray at 1yr. Had to do follow up Chest CT because of a "spot" but it looks fine- will redo that test in 4 mo.

Good luck to you ,

Kelly

Hey, can anyone give me a ballpark figure of what BRCA testing costs?  I have Anthem blue cross insurance, but have been told that insurance does not cover this test.

I had dcis and invasive carcinoma in my right breast.  Had a lumpectomy in February, followed by 4 treatments of chemo.  I begin radiation this week.

I had every test imaginable done before my surgery, except for BRCA testing.  My maternal grandmother had breast cancer ( at 80), and my sister had endometrial cancer.  Now I am wondering if I should have BRCA testing done.   

 God Bless you all and keep you strong!

Melissa 

i-z-z-i,

I don't know about anyone else but i am glad you posted. It is fantastic that your daughter is -!!!! My girls are only 14 and 7 and so I have the constant thought about their status!! I have been trying to talk my sister and brother into being tested but they just do not see why--- very frustrating!!

Kelly

Tiffany,

I also am BRCA 1+ and  TNBC.  I had a lumpectomy,chemo & radiation in 2005.  Went 6 &1/2 years then was diagnosed w/new CA in other breast. Decided to have Bilateral mastectomy, LD recon w/TE , silicone implants in 2011.  My oncologist has release me from his care, I am followed every 6 months by my Surgeon, plastic surgeon and Gyne.  No scans or blood work, just clinical exams.  Continue w/self exams especially around the implant edges and your scars.  It has been 1 year and I can honestly say that I would do it again.  There are always some side effects such as numbness,itching , heaviness of the implants & tightness.  It all gets better over time . Actually I just think I got use to feeling this way. Good luck to you.

i-z-z-i



Welcome. So glad to hear your daughter is negative. Also, of course you are welcome to post! Besides, breast cancer and ovarian are linked with the same genetic mutation.

I am TNBC and BRCA +

I had bilateral mastectomy, ovaries & tubes removed. One day my boys will need testing, but not right now. My Mom would not get tested, so I do not know if it is mother or fathers side.i figure it doesn't matter anyhow (for my family situation)

Enjoy this long weekend folks....

Well, Dus, keep in mind that having your ovaries taken out and losing your mother at an early age can together cause a lot of emotions. My mother died after battling with breast cancer at age 53. I was only 25. I had a baby, was going through a divorce, starting a new relationship, and an exhausting job. It was just too much to handle. I had to think of my child and so I saw a therapist who put me on antidepressant/anxiety medication. I should have been on them years before, but just could never get myself to give in like that. But it was best decision I could have made. I was more involved with my son and happier and more helpful around the house and at work. I thought more clearly. 

I really encourage you to see a therapist. Even if you don't want medication like that, just talking with a professional can do wonders. 

ps..I just had BMX last week. 2 drainage tubes were just removed today. I plan on getting my ovaries removed in the next few years, too. But I was told to wait with that because there are negative side effects if ovaries are removed at a young age. I need to be closer to menopause age.