brca1

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cassou1
cassou1 Member Posts: 31
edited June 2014 in Genetic Testing

year ago tested postive for the brca1 gene. jan had hysterectomy-had everything removed.now the delema is having a double mystectomy. is there anyone who tested positive for the brca1 gene and just had a hysterectomy, and just kept being monitored in the breast department-having mammograms, mris and being on tamioxifen-which i'm taking.

thank you

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  • westiemom
    westiemom Member Posts: 174
    edited June 2010

    I tested positive for brca1, but the test was done after I was diagnosed with breast cancer so this made my decision for a bi-lateral much easier.

    This is totally me/my opinion if I were in your scenario. Speak to your gyn and also meet with a gyn oncologist. I would ask if having a complete hysterectomy and treated with tamoxifen reduces your chances of breast cancer and by what percent along with being closely monitored. Are you having any breast issues? I have at least 5 females on my father's side who had breast cancer and all had a bi-lateral mastectomy some were diagnosed 15/20 years ago and are doing very well now.

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  • LISAMG
    LISAMG Member Posts: 639
    edited June 2010

    BRCA1 cancers are often triple negative and aggressive. Tomoxifen will not help these situations. Cassou, what is your family history with BC and ages of onset?? May I ask your age?  This may be very important for you with your decision making. Have you consulted with a genetic counselor?

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  • cassou1
    cassou1 Member Posts: 31
    edited June 2010

    thank you lisamg for responding to my  response 

    my sister was 41 when first got breast cancer.  had a mastectomy. cancer free 11 years, got in her other breast, had one round of chemo, got an infection and passed away a year ago, right before i was to get tested for the mutated gene (she took the test-came back back positive for the brca1) at he age 52. i'm now 50, this past jan., had a hysterectomy. the cancer that my sister had was an agressive form.  as i read articles, that tamoxifen, doesn't help if you have the brca1 gene. had a great-aunt had double mastectomy when she was in in her forties, her daughter(my cousin) died from breast cancer. don't know about her daughters{trying to find them)my other cousin(my mother's brother's daughter) dignosed with breast cancer a year ago, the time that my sister passed away. would never know if my mother would have gotten breast cancer, she died at the age of 53, her mother passed away at the age of 48, cancer of the uterus, but died from a heart attack.  the odds of me not getting cancer does not look good for me.

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  • lallapu
    lallapu Member Posts: 1
    edited June 2010

    Hi, I was diagnosed BRCA! 5 years agoand finally, I just got a double mastectomy with immediate reconstruction...feel soooo much beter now ! 90% of the chances ao havin BC are GONE it would be more if I had decided to take the nipple awa, wich I didn't do but it still feels so good... Hysterctomy is next (I'm 43).

    That's my way of figting-it.

    All the best

    Laura

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  • tibet
    tibet Member Posts: 545
    edited July 2010

    lallapu

    Did you get BRCA 1 or BRCA2 ? Did you have a BC dx 5 yrs ago?

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  • cassou1
    cassou1 Member Posts: 31
    edited July 2010

    have any of you ladies been tested for the brca gene before having cancer the second time around. my sister got tested for the gene when her breast cancer came back in her other breast after being cancer free foer ten years. when she tested positive for brca 1, i got tested positive no sign of cancer. doing every thing possible not to get cancer so my question-not having cancer tested positive for the mutated gene and deciding whether or not to do the preventive mastectomy?(already did the hysterectomy)

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  • cassou1
    cassou1 Member Posts: 31
    edited July 2010

    if anyone knows out there, are all brca mutated gene deleterious?

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  • kittycat
    kittycat Member Posts: 2,144
    edited July 2010

    cassou - I am BRCA1+ and had a bilateral mastectomy last year. Didn't take tamoxifen because I was ER/PR negative.  I had a 2nd diagnosis this past April.  I am triple negative.  They say 80% of BRCA patients are triple negative.  My sister had BC 8 months prior to my dx.   Funny thing is that she has the exact same BRCA1 mutation, but was ER positive.  You just never know.  Did you have BC?  Were you hormone positive??  I was supposed to get a full hyst/ooph in May, but it got postponed with my 2nd bc dx. 

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  • hrf
    hrf Member Posts: 3,225
    edited July 2010

    There is lots of good information on the FORCE website.

    I'm BRCA2+ .. have had 2 primaries...first was TN. Second was 100% ES+ ... Had pbso after first dx ... had bmx following second dx.

    I tried surveillance .... didn't work at all.

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  • GC1
    GC1 Member Posts: 16
    edited July 2010

    "if anyone knows out there, are all brca mutated gene deleterious?"

    A mutation in a gene refers to the fact that there is a change in the normal letter sequence of the gene.  Some changes do cause the gene to no longer function properly; others have no effect on how the gene (and protein) function.  So in answer to your question, not all mutations are deleterious.  

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  • cassou1
    cassou1 Member Posts: 31
    edited July 2010

    no idon't have breast cancer. in the other post that i wrote into, my sister had breast cancer, twice, then tested for the gene, that's when i got test-brca1 positive, since idon't have cancer(yet)so i'm neither hormanal positive or negative-had the hysterectomy 6 months ago-next year probablay heading for the bilateral mastectomy. am on tamosifen-

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  • Oddball1
    Oddball1 Member Posts: 65
    edited August 2010

    Cassou1...I feel for you....I too have the gene and struggle with this decision.  I recently went to a FORCE conference and learned more than I wanted to know about this gene.  Bottom line, it is really scary and REAL!! I am trying to convince myself of this, but it is true.

    My mom got cancer at 33, and then at 42.  Passed away when I was 14.  My grandma in her 40's got cancer and died at 50.  

    I am having the PBM this month UNLESS I chicken out....but I already did once and regretted it.

    I just had a scare with a MRI and let me tell you....NOT FUN.

    For me, I just can't go on not doing surgery because of my family history and I don't want this hanging over my head any longer!!!!

    Hope that helps....and my mutation is deleterious!! 

    Unless you want to face cancer and treatments one day....I encourage you to do the surgery!!!! 

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  • cassou1
    cassou1 Member Posts: 31
    edited August 2010

    hi oddball-tomorrow i'm seeing my primary doctor-i'll tell him. oct. have my mammo, then in novem. i'll be seeing my breast ddoctor and tell her my decission-this really sucks-i wish my middle sister was still with me, so she could help me through all this(passed away 05/05/09)she was my biological sister-have 1/2 siblings-1 sister, 3 brothers sasme dad different moms(this is gene came from my mother's side of the family german ancestory)but i do have the full support from them. my older sister feels bad that i have to go through this-but unfortunately it is what it is-can't change it, but just move forward.i've wrote this somewhere in one of these brca sites-one lady wrote to me stating -which is true-my sister didn't have a choice, i do. there are times that my sister comes into my dreams saying "do you want to go through what i went through"the answer "no!" reading about all the ladies going through chemo amybe radition, being sick-i think not. they are attached to me, but i'm not attached to them, besides, my husband said to me"love your boobs, but i love you more"

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  • Oddball1
    Oddball1 Member Posts: 65
    edited August 2010

    I love what your husband said...tell him we like.  "Love your boobs, love you more."  

    I just wrote to you on the other post and said yes, I love my boobs too, but I love preventing cancer more.  I love me more and my children more than keeping my breasts.  Great way to look at this. Please PM me and we can talk some time.  Big hugs to you.  Sorry about your sister...she is speaking to you I do believe.  Stay positive, make friends and don't do this alone!!!  Get the support you need and move forward.  I found myself so paralyzed with fear at times...that does nothing for you or anyone around you!!!  Just keep taking baby steps......make a decision and like many say....never look back.

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