BRCA2 Positive

Ashley1226
Ashley1226 Member Posts: 7
edited June 2014 in High Risk for Breast Cancer

I am 30 and found out this past week that I am BRCA2 positive. My mother was diagnosed with BC at age 39 and just hit her 10 year cancer free mark. She had the genetic testing done after 5 years and was BRCA2 positive. She immediately decided to have a bilateral mastectomy and a partial hysterectomy. My mom also had 2 aunts who had BC and 3rd who died from ovarian cancer. Both my younger sisters were tested last year & both are BRCA2 positive as well.



With all this knowledge I feel like a ticking time bomb right now. I have a 2 year old and want 2 more children (we plan to start trying for #2 now). I am 99% sure I want to have the prophylactic bi lateral mastectomy, along with a partial hysterectomy after I finish having my babies.



The thought of all of this is terrifying. My husband is very supportive & agrees I should have these surgeries. He says that having me is a million times more important than my boobs lol (I'll get implants & want to spare the nipples & skin). But still the thought of it right now is so scary...knowing I will be undergoing these surgeries in the future, with 3 small children, I'm the breadwinner of the family so it's crucial to us that I heal quickly and everything goes smoothly. Although I know this is a better route to take than to wait for the potential of getting BC and then going through all of this PLUS chemo & radiation...and possibly death. One of my two sisters will eventually get the surgeries too. I feel bad for the other one...she's a recovering pain killer addict (addicted for 10 years & still on suboxone) so in her mind, surgery is not an option as she's more scared of relapsing back on pain meds than anything else.



For anyone who's had the prophylactic mastectomy, what was your healing like? What was the pain like? What advice (even just small tips) can you offer someone who will be going thru this?



If you read this, thank you. I'm new here so just knowing this community is here is a big relief.

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Comments

  • momof2doxies
    momof2doxies Member Posts: 342
    edited September 2013

    Hello Ashley,

    So sorry to hear of your situation. You are about the same age as my daughter. Last week I was diagnosed with another (new) cancer in my opposite breast from last year. I do not have enough history on the female side of my family due to my maternal grandmother's early death (1918) and my mother not having any sisters. This is such a horrible gene to inherit. But you have time to get information and make plans. I will have to have that test performed and also make the same decisions if it turns out positive. I will also have to have the same conversation with my only daughter. 

    I turn 60 this month and I can only speak about a lumoectomy from last year. I came through fine...walking around the neighborhood the next morning. You are very young, and probably in excellent physical shape, so I would tend to believe you will be fine with few side effects or pain. You are right, your chances are so high in developing BC and my opinion is that the surgery is the best option. The removal of your ovaries will put you into induced menopause, which has its own little issues. But there are drugs available for all those things. Try to take a deep breath and just take it one step at a time. Talk to your surgeon and plastic surgeon, and you might even seek genetic counseling before having your next child.

    Sorry, I cannot provide you with any more specifics. But you touched my heart with being so young. Hopefully, others will give you more helpful information.

    Could you answer one question for me, please? How long did it take to get the results from the lab that performed your BRCA2?

    ((Hugs))

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  • Ashley1226
    Ashley1226 Member Posts: 7
    edited September 2013

    Thanks for your reply. I tried to have the BRCA analysis done last November but 2 nurses couldn't draw any blood for whatever reason.



    I had an annual Pap smear with my OB/GYN on September 5. His nurse did a mouth wash (swish Scope around for 30 seconds & then spit into a tube, then repeat). I got the results back on September 18...so only 2 weeks.



    They only had to check for the one same gene mutation that my mom has, & they sent a copy of her results with my orders to the lab. My dr said it's near to impossible for me to be negative for her gene but have inherited another one from my dads side (who has no cancer history). So it may take longer if they're doing the full DNA check.

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  • Patsycan
    Patsycan Member Posts: 9
    edited September 2013

    I am also BRCA2 positive.  I just had a prophylactic mastectomy 3 days ago, but I am not having reconstruction. I have found a lot of support from a group I joined on facebook.  You should be able to find answers there as well. It is www.facebook.com/groups/ProphylacticMastectomy.  Good luck.

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  • Ashley1226
    Ashley1226 Member Posts: 7
    edited September 2013

    How are you feeling, Patsycan? Hope you are feeling well after your surgery and not in much pain. Thanks for the link!

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  • mc_in_nc
    mc_in_nc Member Posts: 27
    edited September 2013

    Hi Ashley -

    I had a lumpectomy back in July, just started chemo.  I tested postive for the BRCA2 gene and my docs suggested that I have a bilateral after I finish my chemo treatments.  I'm 39 and single so this terrifies me, I said it would be a no brainer if I were already married, but being caught in the single life is a scary thought on how I will be perceived by men. My mom keeps telling me that's when I'll realize I've met my soul mate :-)

    Melissa

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  • Ashley1226
    Ashley1226 Member Posts: 7
    edited September 2013

    I can understand that fear, and I also think your mom is right. :)

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited September 2013

    New BRCA+ ladies - please be sure to check out www.facingourrisk.org. It is a great source of info for those of us who test BRCA+.

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  • Ashley1226
    Ashley1226 Member Posts: 7
    edited September 2013

    Thanks, I have been to that website. Also joined the FB page Patsycan mentioned. Lots of support there.

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  • Kgregorin
    Kgregorin Member Posts: 3
    edited June 2014

    hi,

    I had my double mastectomy on May 29th.  So it will be 3 weeks this Thursday.  Unfortunately, it was not prophylactic.  The first week was the worst, I had 4 drains hanging from me, but after one week two came out and the another week and the other two came out.  That was heavenly and so was the drain-free shower.  now it's just healing pain and I can handle that with pain meds.  

    My youngest daughter is also brca2+ and she is pregnant with twin girls.  She will have a mastectomy  in the near future as well as an oopherectomy.  I had the oopherectomy two years ago and honestly the recuperation is nothing.  I also went on tamoxifen for a year and that obviously did nothing as I am dealing with bc now.  The pathology report showed progesterone+, her2+, so maybe that's why it didn't work.  My oldest daughter was diagnosed three years ago, stage 4.  We were devastated.  She is a fighter.  Get the surgery, live your life, enjoy your family, and be thankful that today, we have the knowledge that we have.   It will be a load off your mind.  My daughters cancer saved my life, and although I wish it was me with stage 4 and not her, I know we will fight this together, and who knows we just might win!  Miracles happen everyday!

    Good luck to. You.

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  • WomanD
    WomanD Member Posts: 1
    edited June 2014

    Hi Everyone, Today I joined this discussion group. I am 58. I had my 3 sons by my mid 30s. At 40, a biopsy which was neg. At 45, DCIS, stage 1B and growing fast. Estrogen Based. A lumpectomy with clear lymph nodes (recovery a breeze). Had 36 radiation treatments, no chemo. Took tomaxefin for 1 year, bad side affects and had to stop. At 49 had the NovaSure procedure to reduce heavy cycles. One week later, hemorrhaged, had a hysterectomy but doc left my ovaries in tact. Six years later, I tested positive for BRCA1. Had and oophorectomy (easy as pie) and started taking Evista. Just had a biopsy in my other breast but was negative. Oooh those calcifications! I think this is my wake up call. I'm seeing a general surgeon and plastic surgeon later this week...with Kaiser. (I had Aetna when I had my bc in 2001/2002). I am bringing my husband to the appointment and he doesn't feel I should have a double mastectomy ...period.  I am having a hard with this and those pictures that I viewed online didn't help. It's been 12 1/2 years since my breast cancer but with the BRCA gene....I don't think that I have much of a choice. This is a bummer, ...2 of my 3 sons tested positive for the gene.

    So many brave women!  There is a limit to my strength.

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