Help - Just diagnosed BCRA-1 positive

kks_rd

Hi everyone,

Ive been trying to read and make sense of all the collective wisdom in this part of the forum, but it is getting late and I admit I am struggling.

I was dx'ed with BC just over two weeks ago at age 32, and within a week opted to have the genetic testing done because although to my knowledge there is NO family history (most of my relatives live to their 80s and 90s!), I didn't want to NOT know everything I could know.  Today I got the call that in fact I am BRCA-1 positive.  It felt just as awful as hearing the dx for the first time...

Tomorrow I am meeting with my BS again and would like to come as prepared as possible to talk about my options.  Before today I was leaning towards breast conservation, does this status take that option off the table?  My BS said chemo was "probable" but not definite, how does this status change the likelihood I will need chemo?

I guess I was hoping that since (so far) it was looking like I caught it early, my tx could be as simple as a lumpectomy and some radiation.  Felt pretty straightforward and didn't involve too much time off from work, etc.  What I think I am really asking is... how much of a game-changer is this?  My goal is to find some kind of balance between keeping as much of "me" as possible (my breasts, my hair, my sanity ) while minimizing the chance this hell will ever visit me again.

Hope that makes sense.  I truly appreciate anything you are able to share from your experience and understanding of the subject.

Thanks all, hope you are well tonight,

Kat

curecx2011

Hi kks- I too am BRCA positive.  Being BRCA 1 positive is probably not a game changer as far as treatment. What it does was make us have a greater risk of developing breast/Ovarian cancer- because we care the gene. I am sure your surgeon or oncologist will also talk to you about removing your ovaries, which I will be doing this year.  I also had a bilateral mastectomy, because I wanted to lessen my chance of this disease coming back. Hold on hang tight! IT will be a roller coaster ride bit BC is very much survivable...hang tight! Sending you hugs!

slinky

Sorry you had to get this news.  When I found out I had cancer, I knew I wanted a BMX even though the tumor was really small.  I did not want to go through the emotional turmoil again with the other breast.  My BS was actually surprised by my decision but never made me feel bad about my decision.  I also told him I wanted a gene test, which he administered.  One week before my scheduled surgery date for the BMX, my BS called with the results.  He said I was BRCA1+ and my decision for a BMX was a great decision since the chances for me to get cancer in the other breast was 80%.  I also have a 40% chance of ovarian cancer, so I am getting a hysterectomy to reduce the odds.

Please talk to your doctor about this - my understanding is if you test positive for the BRCA1 gene, your options for the best survival rate and least reoccurence is limited. 

poptart

I have not tested positive for either BRCA1 or 2 (despite having bilateral breast cancer - only dcis in one side - and a strong family history).  I did notice that you are er- and pr-.  I am not sure what your her2 status is, but with er-pr-, you would likely get chemo regardless of your brca status.  Triple negative bc almost always gets chemotherapy (and is fairly common among those who are brca1+), especially if you are young/premenopausal, and even if you are older, into your 70s.  If your her2+, you would definitely have chemo + hercepten.  I was triple negative (early) on my one side and was treated very aggressively with mastectomy, chemotherapy and radiation.  If your cancer is small, and you have a bilateral mastectomy, you may be able to skip radiation and go straight to reconstruction with good cosmetic results.  I had delayed reconstruction (after radiation) so I am pretty small.

kks_rd

Hi there, sorry I do not yet know my HER status.  BS says it is best to test on the "whole specimen."

The BS said today that although I still need to consult with an onc, chemo seems moree likely given this news (the MRI also shows a much bigger tumor than originally thought). It may be possible to start chemo before the surgery in an effort to shrink the tumor, because it's big enough now that I would be quite disfigured after a lumpectomy.

So much to consider...... thanks everyone from sharing from your own experiences...

Rennasus

Hi kks_rd,

After I had my MRI, they saw that my mass was 3.2 cm and smack in the middle of my boob, so a lumpectomy was no longer an option (too disfiguring). I had decided that if I needed a mastectomy, I was going to have both removed and reconstructed so they matched. I also did not want to go through this again on the other side for the rest of my life. I never regretted the decision. 

A lot of women have had success keeping their hair with the Penguin Cold Caps. There is a thread called Cold Cap Users Past and Present, to Save Hair that might be helpful to you.

Hugs to you in your journey!  

kt57

Kat : the book "Positive Results" by Joi Morris and Ora Gordon is very good resource.  It explains the genetics of BRCA, the risks, the options.  A must read for BRCA carriers.

thenewme

Hi Kat, have you met with a genetic counselor? They can help to sort out your specific risks and recommendations with regard to your BRCA positive status.

Here's a link with more information and resources on genetic counseling.

http://www.nsgc.org

Best of luck! You're asking a lot of really great questions, and I apologize for my part in sidetracking your other post!

kks_rd

I got the test results over the phone because I was traveling for work - the genetic counselor and I knew we likely would not have time to meet before I met with the BS, so we agreed to that with the underestanding that there would be a follow-up appointment.  Actually, today is the day we said we would try to connect to set that up.  So, with luck I can see her next week sometime......

DivaJMusic

Hi Kat,



We are fairly similar in stats. I'm 31 and was diagnosed in Sept. By nov I had a dmx and a total abdominal hysterectomy at the same time. I was only going to have my ovaries removed however it was discovered only a week before surgery that I had a huge tumor in my uterus and several small ones on my ovaries. Fortunately those were B9. I just finished 4 months of chemo and have slowly returned to work. I'm sure your doctors will be the same as mine. Be as aggressive as possible now to lower your chance of recurrence. Because as I'm sure you've read our chance of recurrence is through the roof if you do anything else. Best wishes to you and feel free to PM me any questions you may have. The process sucks but you will survive. *hugs* jenn

carlie71

Hello Kat          I'm 39 and was diagnosised with breast cancer in april. I also was have the the BRAC 1 mutation. I had a bi- lateral mastectomy  on the 17th of May and have been told I should have my ovaries removed because of the high chance of getting ovarian cancer . I start chemo in a couple weeks. If you have sisters or brothers they should be tested because one of your parents carry the gene and they have a 50 % of having it to. I know my sister, 4 of my cousins , dad  and 2 aunt have BRAC 1 mutation. I have had a aunt and cousin die.                                                               

Latte

hi Kat,

I am BRCA1+, and decided to have a lumpectomy not a BMX (plus i also had an ooph after I finished rads).  I found it difficult to decide to have a BMX while dealing with treating cancer - so I decided to just deal with the cancer. My onc and BS both recommended the lumpectomy, plus regular MRI screening - and told me I can always change my mind and do a BMX later on for prevention if I want. But not to make the decision under pressure, because there's no reversing it later...

pmiller1

THINKING ABOUT  PBM    BI LAT MYSELF ......FAMILY HISTORY IS VERY BAD- 87%

MOST PASSED.   IN SAN DIEGO,CALIF.

PMILLERCA@COX.NET

Sandals

Just reading these posts and wondering why you ladies opted for a Oopherectmy when survival rates for BRCA1. are better than the average Breast Cancer lady?

hydeskate

According to what the genetics report a Oop is recomended once I turn 35, I inherited my BRAC 1 gene from my mother who died not of Ovarian at 52 had a lump removed from breast right at 26 and my Aunt had breast cancer at 29 and died @ 56 from ovarian.   From what I was told as well as my cousins who have the gene you have a  higher risk of ovarian not lower.