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Discussion For Brca 1 And 2 Gene Mutation

Discussion in 'Health & Wellness' started by madhat, Nov 29, 2022.

  1. madhat

    madhat Platinum IL'ite

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    hI @1Sandhya ,

    I may have not mentioned in my original post that i lost my aunt first and then my mom to this dreaded thing. My aunt was very courageous and went through several procedures and medicines to cure herself. But since it was detected late and she also did not get her ovaries removed after detection. As BC detected people have a high chance of it recurring in the ovaries. And thats where it happened for her.
    My mom on the other had was scared after seeing my aunt undergo so much that she didnot get herself tested and we being far away could not pressurize her. So the same thing happened. Detected very very late for my mom. Too late to even give her even 1 chemo.
    This was what made me and my sister to get tested. Both of us have the mutation.
    So we go in for mri's and mamo's every year.
    I got bot my ovaries and fallopian tubes removed 6 yrs back as detection in the tubes and ovaries is the most difficult.
    sometimes the mri is so sensitive that it can give false alarms. That is what happened in my situ right now.
     
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  2. MalStrom

    MalStrom IL Hall of Fame

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    You are managing your risk well. If you can deal with the mental stress of triggering MRIs then I’d continue what you’re doing until you feel you’re in the right place to make a decision about a prophylactic mastectomy.
    Have you discussed getting your daughter tested for the mutation?
     
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  3. 1Sandhya

    1Sandhya Platinum IL'ite

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    Dear madhat,
    Thanks for the additional info. After reading all this, it seems to me the main reason you are holding out and postponing your op is your less then optimal experience in 2016.

    I belong to the school of thought of “If it’s inevitable why wait?” :) I want to point out that right now may be the best time for you to schedule this op. You have done as much as you can but now this recent scare is something else altogether. A new chapter. In 2016 your kids were 12-15 ish, in middle school or HS, probably, so it must have been quite tough to handle house function with such young children. School going kids need more hands-on care and daily tending and probably all of it fell on your h. That bad experience has affected you disproportionately I feel.

    But now it’s 6 years later. There is no reason why this surgery will be a repeat of that experience. You and your kids are older and wiser. Your kids are young adults now, better able to help around the home and function independently. If you schedule the op for say the summer when both are home you will have their support and help to see you through the initial recovery phase.
    Just think about it. If it’s prophylactic op maybe you can pick a time to schedule it so it’s convenient for you and plan around the logistics. From the previous experience you also have a better idea of what to plan for and what is not really that important.

    Btw, how did your sister handle her diagnosis? What did she do? Talking over your concerns with her may be helpful.

    PS: I just presented arguments which appeared reasonable or logical to me. Not trying to push you into something you don’t want to do. My hope is that the above will give you some food for thought from a different angle. But ultimately the decision is yours. My best wishes! And do keep us posted!
     
    Last edited: Dec 18, 2022
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  4. madhat

    madhat Platinum IL'ite

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    yes, my thoughts exactly. My daughter is 17 now. My doc advised testing her at a later stage.
     
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  5. madhat

    madhat Platinum IL'ite

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    there is an age gap of 9 yrs bet me and my sis. she just turned 40 . she also had the same mri situation about 5 or 6 yrs back. but i think the diagnosis was different. they could spot the problem through ultrasound too. Everything turned out okay. There were no issues but they placed a titanium clip in that area. just like they did for me now. This is so that they know that they have already seen that area and can monitor it easily.

    she only does mammograms. she stopped doing mri's. her reasoning is different though.

    But great to get a discussion going. This is also more for info for people who don't know about this so that they can do their testing.
     

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