My story re: BRCA testing

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katkel
katkel Member Posts: 28
edited June 2014 in High Risk of Recurrence or Second Breast Cancer
Hello.. I am new here and wanted to add my story in case it will help others in making the decision regarding genetic testing. I was diagnosed last July with stage 3 at the age of 41. I have had NO cancer, whatsoever, on either side of my family. My oncologist at Johns Hopkins wanted me to be tested solely because of my age. He said it was less than a 10% chance that I would test positive. Because I have small children, and want to do everything to gain knowledge and prevent recurrence I decided to have the test. To everyones' shock--I tested positive for BRCA1. I am so happy that my family and I have that knowledge, as now I will get my other breast removed and ovaries as well. For myself, I believe knowledge is power. I do believe that everyone needs to make the decision that is right for them and their family. My prayers and best wishes go out to all of you wonderful ladies out there... I have gained such knowledge and inspiration from you all... Kathy
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  • brando
    brando Member Posts: 36
    edited June 2007
    Knowledge is power, I agree.
    I, too am BRCA1+, stage 3. I had the cancer breast removed and the other side removed prophylactically as well.
    Now, when it comes to the ovaries--I am not removing them at all---EVER. I know what my chances are, but I do not want my quality of life to dwindle away. I already am on chemo-menopause, and it is not fun. If I choose to get a surgical menopause, it comes with many more risks due to my younger age. I am just not doing it. In a way, I would rather die than lose my ovaries and risk heart disease, weight gain, muscle loss, and bone loss (the list goes on). Maybe if I were already 40 or 50 I would even consider the procedure, but I doubt I will even have them removed at 50 or 60 (if I live that long).
    But, I do believe learning about your genetic inheritance is mammoth to making sure you are educated about what you need to do or not do.
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  • katkel
    katkel Member Posts: 28
    edited June 2007
    Hi Brando...

    We are very similiar. I am also a triple negative. I definitely see where you are coming from regarding the ovaries. I too am experiencing chemo-induced menopause, but symptoms have been very mild, fortunately. Just a few hot flashes here and there. Do you get frequent surveillance tests? I get an untrasound and CA-125 blood test every six months, until I can have my surgery. I am on a clinical trial of Avastin until November, so I am not able to have any surgery until then. Wishing you all the best....

    Kathy
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  • lisettemac
    lisettemac Member Posts: 213
    edited July 2007

    Interesting how everyone comes out on this one. I haven't done the BRCA testing yet, but if I come out positive, I will likely have my ovaries out, but not a prophalactic mastectomy. I have other reasons to get rid of the ovaries (significant endometriosis), but I figure that it is easier to monitor me for bc than for ovarian cancer. Hoping that I won't reach this decision point at all, but thought I'd share my perspective.

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  • GreenHeron
    GreenHeron Member Posts: 85
    edited July 2007
    I was 43 when diagnosed. I was also under chemopause. Unfortunately, at 45 I got the brca info, with no family history, and I thought that I had not gone through all of that just to stop short now of every, single percentage point I could. So I did the ooph and the bilat mast ( I was too hard to monitor). I have about 95% of my life back, playing tennis again finally this summer, etc...but have gained weight...almost 35 pounds, that I can't lose. I'm on femara, and something to keep my bones strong, which they are, thanks to a resumed active lifestyle. My son is hanging around on my chair as I write this. For me, the weight bothers me, but I'm HERE and I'm alive and happy to be so. And I feel good about myself. I really miss being pretty, but don't feel ugly; and certainly not enough to ever look back on my decision.

    Wishing us all health and peace and strength...

    Flashdif
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  • saluki
    saluki Member Posts: 2,287
    edited July 2007
    The day your not pretty I'll eat my hat!!! This is one stunning women-- for those of you that have not met her.
    Unbelievable that you could think that.

    Shaking my head--

    Stay well,
    Susie
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  • Nickig
    Nickig Member Posts: 357
    edited July 2007
    I was 36 @dx. Stg 2. Triple negative, bilat mast & 4 AC +4taxotere. I just learned last week that I am BRCA 1+. I also had no history. I am now 39 and approaching my 3rd anniv of NED. and I've decided to go ahead and have a hystorectomy (sp?)Get it all taken out. I'll be turning 40 in Oct and probably by Nov...menopause. I had chemopause for about 18mons. Wasn't that bad-pretty mild.(except libido ) I also had a feeling it wouldn't last. But menopause is forever. That kinda scares me. But I'm with Flashdif. I also want to take every proactive measure on my part. I know it is so personal. But I fought hard and went thru alot of cra*. I want to try hard not to have to do that again. I want to raise my boy. Anyway...I'm a big believer in Knowledge is Power! I don't know if my family beleives in that tho. That is hard for me to take in. After all they saw me go thru(and am still going thru)- I don't understand why they wouldn't want to know positive or negative. Just so they and their doctors can be proactive and more on top of their health and wellness. Any of you feel like that or am I the only one who finds it hard for my family just to sit back and get blind sided if it happens? I fell like saying to them I set aside my fears...I don't know...guess I"m getting of track.
    Theres my story, too.
    Take care everyone.
    Nicki
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  • newter
    newter Member Posts: 4,330
    edited August 2007
    I found out in May I was BRCA 1 and just had my ooph yesterday. I may be in pain now but I know I will be glad I did it once I have recovered. I do have a question, since I was already in chemo-pause, will I have new side effects with the real menopause? (sp?).

    Now that this is done, I will be revisiting the idea of mastectomies since I had a lumpectomy only in March 06. So far it has not been recommended but the ooph had been.

    Newter
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  • katz03
    katz03 Member Posts: 94
    edited August 2007
    Dear All

    Could anyone tell me what the BRAC Test entails is it just a blood test? Does it take long to get a result?

    Kathy
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  • leaf
    leaf Member Posts: 8,188
    edited August 2007
    Yes, it just involves a blood test. I have not had it, just genetic counseling.

    So I'm treading on thin ice here for the rest of this post.
    In the US, I think it takes a minimum of like 2 weeks (if you pay extra expidited fees), and the usual time is like a month or something.) I've seen
    cost estimates from about $2,000 to about $5,000 (including counseling.)

    As far as I know, there is only one place in the US that does it -Myriad. I don't
    know what happens in other countries.

    I think I've read posts from people in other countries (?Australia) where they have waited for a year.
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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    Yes, the BRCA test is a simple blood test. I think mine took about 3-1/2 weeks to come back.
    I thought for sure I would test positive...I am first to have cancer (that we know of) in the family and I was 1 month shy of turning 50 when Dx, which by "the rules" makes me under 50 and higher risk. That and the fact that my father was Ashkenazi Jew and I was born in Poland (Eastern European) all raised red flags and allowed me the test.
    I was all set to have the bilateral mastectomy purely from the initial BC dx, and needed to make a decision on my ovaries.
    I ended up testing negative. Go figure.
    I did go through with the bilaterals but left the ovaries at this time. I'm on tamoxifen, so who knows that will do to my innards in terms of what I get to keep

    Best to you all ladies and your decisions!
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  • Bunnysmama
    Bunnysmama Member Posts: 20
    edited September 2007
    Ugh. Reading all of these posts has made me realize that I am, in fact, as confused as I thought I was about all this stuff.

    I was dx in 11/06, went through 2 lumpectomy surgeries, chemo and rads, finished in 6/07. I was finally starting to feel like I'd put it all behind me and had gotten my strength back again when I went through genetic counseling and testing and came back positive for BRCA2. Nothing like THAT little speedbump on the road to recovery.

    I've been told that I should have an ooph, and while it's not an immediate decision it should be done by the time I'm 40. I'm 38 now so that seems a bit immediate to me. I was in chemopause for a couple months so I've been through the hot flashes and the night sweats and all that. My period has come back again with a vengeance that has more than made up for lost time. So I'm not worried about the ooph putting me in menopause again. I am worried about the weight gain, the osteoporosis, the dementia...in general getting old before I'm supposed to. I don't have a history of OC in my family, but then again I seem to be blazing the trail for all the rest of this stuff so I can't take any chances.

    I was also told that a PBM is suggested but not necessarily recommended. That choice is left up to me. OK, so what are my options? Either cut 'em both off to stop a recurrence that may or may not ever happen, or surveillance in hopes that if it does come back it will be caught early enough that I can go through this hell all over again. Isn't there an Option 3?????

    Anyone want to have a cyber margarita with me? I sure could use it!
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  • hi5
    hi5 Member Posts: 374
    edited September 2007

    I tested positive for the brca gene and will be having ooph and hysterectomy in 7 days. I was dx'ed with bc in March 2006, had a bilateral mastectomy with expanders. I am 3rd of 4 sis to get bc. First one was 33 when she passed away. Second one would not do brca testing and when I was dx'ed had the testing done. She tested positive as did all three of her daughters. I tested positive and so did my daughter.

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  • veggievet
    veggievet Member Posts: 72
    edited September 2007
    Hi BC,
    I'm an 11 year survivor, diagnosed at 33. I have a BRCA 2 mutation.

    I also encourage you to visit the website for FORCE: Facing Our Risk of Cancer Empowered at:

    http://www.facingourrisk.org

    It's another great site. FORCE is dedicated to those with hereditary breast or ovarian cancer and people with a BRCA mutation.

    Warm regards,
    Sue
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