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Your thoughts on BRAC test-

rene9
Posts: 214
Joined: Nov 2009

Ok, I'm trying to understand...If the BRAC test is negative you do not need to have your ovaries or the other breast that does not have cancer removed? I'm trying to research now because my big question is do I need to have my ovaries removed and the breast that does not have cancer- I'm trying to find a way to have peace of mind with this and right now I'm leaning towards these two surgeries and I don't know my BRAC results yet. I know the decision is personal, so just curious to your thoughts...

rene9

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

I have not had the BRAC test done. I am considering it, for the same reason as you. I think if you are positive they will recomend the ovaries be removed. This is what my understanding of it is anyways.

sunny_girl
Posts: 33
Joined: Dec 2009

Hi Rene,

I had the BRCA testing done when I was diagnosed - at least the Ashkenazi panel which looks for the 3 most common defects in women who have ancenstry pointing to this being an issue. I was negative, although I still could have another, lesser known BRCA defect. The problem with having the uncommon defects, is that doctors can't recommend any specific treatment(s), because there aren't enough similar women to know what your risks are statistically.

I decided before my test that I would have the prophylactic oophorectomy if I was positive, because ovarian cancer is sooo much worse than breast cancer, and also much harder to detect. BRCA+ is also associated with many other cancers. Ususally BRAC+ breast cancer is diagnosed much younger, is more aggressive, and is harder to treat.

I do think it is worth testing so you have more information to decide what to do in your treatment. Having the surgeries if you are BRAC- makes less sense to me. More than half of women diagnosed with BRCA- breast cancer are cured by the surgery alone. Other treatments are just "insurance," especially if you have Grade 1 cancer and negative nodes. That being said, I don't know about feeling "peace of mind" after a cancer diagnosis. I have a sort of vigilant truce... where I am always doing things to prevent or detect a recurrence, and maintain optimism it never happens.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I had a "mutation of unknown significance" come back on my result in July 2008. This was at the time of having a large ovarian cyst and elevated CA-125 result for ovarian cancer. We decided to take the one ovary w/cyst which was thankfully negative. Now, 19 months later, my testing results have been reclassified to "no mutation". Just a little heads up to you that medical testing is not always black and white!

rene9
Posts: 214
Joined: Nov 2009

I do want to have the test done to help me decide on whether i need to have my ovaries removed and my right breast. I was thinking to have them regardless, but if i don't need them i won't have any extra surgeries...But, my cancer is grade 2 with 2 out of 16 lymph nodes involved...Thanks!

rene9

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I didn't have the test as I feel I am still too young to have my ovaries removed and don't want another surgery at this time. Good luck in whatever you do.

Angie

ohilly
Posts: 446
Joined: Jan 2008

I was positive for the BRCA test. Fortunately, I had already had my ovaries removed years ago because of fibroid tumors, but I did choose to have a preventive mastectomy on my healthy breast (I had one breast removed because it had cancer, and the other was a preventive mastectomy). I am very, very glad I did all this and have no regrets. Everyone has a different opinion, but if it were me, I would want to have both breasts removed and my ovaries removed even if I didn't have the BRCA gene. I'm taking no chances.

Ohilly

Jacque101's picture
Jacque101
Posts: 75
Joined: Dec 2009

Hello Rene, I had both BRAC 1 and BRAC 2 test. My test were both negative...good news. My reason for having the test was to have more information for my children and grandchildren. Since my mother and aunts and cousins had also developed breast cancer I needed to know if I carried that gene and could it be passed on to my children. My brothers could have also have the gene and could have passed this to their children. I felt the test was just good for me and family. This isn't proof they will not get a cancer...but if my test were positive, they each would have had a heads up warning. My insurance paid for BRAC 1, BRAC 2 was out of pocket but worth it to me. I am now doing chemo for breast cancer and node involvement. But my mind is at rest knowing I did not get this beast from my dear mom and knowing my children won't get it from me. : ) Have a good weekend. Jacki

girls4444's picture
girls4444
Posts: 35
Joined: Nov 2009

Myself and my sister both were both diagonised with breast cancer in 2009, we both have tested positive for the brac test, and my oldest daughter has also tested positive. I am having both breast removed and my ovaries and my sister is going to do the same, it is my understanding that you have a greater chance of getting breast cancer in the other breast and ovarian cancer within 5 years after the first breast cancer, I am not willing to take that chance. My daughter will have her ovaries removed within the year, she is 33. Taking the test made my decisions for me, prior to the test I wasn't sure what I was going to do after chemo. I don't want to go through this again. It is a very personal decision, and weighed very heavy on my mind. Good Luck

rene9
Posts: 214
Joined: Nov 2009

Hi all! My results on the BRCA 1 and 2 came back negative! Yeaaahhh! So, I can breathe a little for my daughter. My plan...With this knowledge I will not put my body through the additional surgeries of ovary removal and the other breast removed. I will complete all of my treatments and after the 5 year mark I will be monitored every 6 months...I won't wait once a year that's just too long-

rene9

rene9
Posts: 214
Joined: Nov 2009

Hi all! My results on the BRCA 1 and 2 came back negative! Yeaaahhh! So, I can breathe a little for my daughter. My plan...With this knowledge I will not put my body through the additional surgeries of ovary removal and the other breast removed. I will complete all of my treatments and after the 5 year mark I will be monitored every 6 months...I won't wait once a year that's just too long-

rene9

New Flower
Posts: 4134
Joined: Aug 2009

for genetic counseling and BRCA testing next week. I am wondering weather or not it will be covered by insurance and what I need to do to force them to pay.
Thanks

rene9
Posts: 214
Joined: Nov 2009

Hi all! My results on the BRCA 1 and 2 came back negative! Yeaaahhh! So, I can breathe a little for my daughter. My plan...With this knowledge I will not put my body through the additional surgeries of ovary removal and the other breast removed. I will complete all of my treatments and after the 5 year mark I will be monitored every 6 months...I won't wait once a year that's just too long-

rene9

ms_independent's picture
ms_independent
Posts: 216
Joined: Nov 2009

I've already said something about this on another post so you may have already read this from me. I tested negative for BRAC 1 & 2 and BART. However, my mother was diagnosed with breast CA at 55, it returned 15 years later in her lungs and bone. My sister was diagnosed in one breast at 30 and the other at 55. I was diagnosed at 52. I had an aunt who died of ovarian cancer. It is significant that the breast CA has been pre and post menopausal in my family. My breast oncologic surgeon wanted me to talk with my gyn about my risk for ovarian cancer as hormone related cancers may run together. She didn't know if I should have frequent transvaginal ultra sounds and CA 125's or have my ovaries removed. I went to my gyn who felt that there was probably a genetic component to our bc. He sent me to a gynecologic oncologist who agreed and recommended I have my ovaries removed. He feels like we probably have a genetic mutation that they don't know to how to test for. Remember the BART has just been available for 2 years---the genetic defect was there- it's the test that wasn't. Given all of that, for piece of mind I plan to have my ovaries removed (assuming the insurance company agrees)and I had both breasts removed with the original diagnosis. It's a very individual choice. I have felt like I have very little control over this nasty disease and as with most of us will always have fears of it returning. One of the things that I do have control over is removing my ovaries and healthy breast. I need to do something active to feel like I have some control. That's one of the few things I can do. We all have to do what feels right to us. Good luck with making your decision---I know how hard it is.

Hugs, El

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