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Listing our BRCA mutations - maybe we can find matches

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  • KKRREN
    KKRREN Member Posts: 3
    edited July 2011

    Thanks, I am glad that I do know...thanks to my Dad for getting tested. My paternal grandmother had some form of uterine or ovarian cancer, she probably passed on the BRCA2 gene to my Father. At least thats what one of the docs said....and makes since. My father had some bleeding from his nipple so he went and had it checked right away. A needle biopsy confirmed cancer, and then the he opted for the genetic testing.

    Since I tested positive for the BRCA2 gene as well, at age 53 I opted for a BPM and oophorectomy. Now I'm just trying to get my 3 brothers on board, for the well being of their kids. 

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited July 2011

    corian -

    I've been trying to keep track of the Myriad lawsuit and I'm really disappointed that it's been such a slow process.  At least the initial ruling was that the patents were invalid but there has been no ruling from the Federal Appeals court since they heard arguments in April.  And regardless of the Appeals court  ruling it is expected to go to the US Supreme court.  So more waiting.  I want the patents to be invalidated.  Myriad quit sending their results to the national database back in 2004.  My belief is that they have really stymied the research into these genes and I can only think that this also affects understanding the other genes that cause breast cancer.

    Oh well.  That's probably getting too political.

    KKRREN,

    That's got to be rough for your Dad to be dx'ed with what is considered by many to be a women's disease.  I hope it is early stage and doesn't have to endure the "full monty".

    I was surprised where my family ended up after my mom and I tested positive (we had already lost our sister to BC - she was most likely positive).  

    I have two brothers.  One has no kids and has no plans to be tested.  The other brother has 1 daughter and is considering testing but hasn't done anything in the last year and a half.  I believe he's waiting for health care to take effect so he can change insurance companies (he's self employed) without worrying bout pre-existing conditions.  Although the GINA law says gene mutations cannot be considered when obtaining medical insurance I think he's worried that something may actually be found.  Dangerous thinking but with the cost of medical insurance what is a person supposed to do?

    None of the 4 grandkids have been tested (3 girls, 1 boy).  They are all adults so they have chosen their own paths.  I was very surprised that my daughter finally opted to not be tested.  She's a researcher by nature (programmer by profession) but on this one she decided to just delay the serious decisions of a positive test at a young age (she's 30).  She's started the high risk surveillance and did her first MRI and just recently the mammo.  So she be screened every 6 months.

    As for the cousins.  We tried to get the word out to all the cousins on my Mom's side.  One female cousin, who happens to be the same age as me, quickly went in to be tested for our sequence and came back positive.  Just as quickly, she scheduled a BMX and recon.  She wrote me a lovely thank you for letting me know about the mutation in our family and how please she was with her new breasts! 

    I guess the point is that all you can do is educate.  As much as I'd like to know that my brothers and the grandkids DON"T have the gene, I'm just left wondering if they do.  They know the score on the risk of the various cancers.  It sure is hard sometimes when you have to respect their decisions to not get tested. 

  • jennyboog
    jennyboog Member Posts: 23
    edited July 2011

    I'm BRCA1 1623del5, + for deleterious mutation....and very confused.  I have no, seriously none, family hx of bc.  I've tracked down relatives that didn't even know I exisisted just to ask and I have yet to find anyone.  I have two brothers and have informed them but they have not been tested and not looking like they will.  I tried to find info on this mutation and didn't find very much out.  Great thread Christy :)

  • MRDRN
    MRDRN Member Posts: 177
    edited July 2011

    Hi Jenny when did you get tested for BRCA, before or after your BC dx?

  • jennyboog
    jennyboog Member Posts: 23
    edited July 2011

    After dx., that's why dx caught me completely blind-sighted and that's why I was told at my mammo I was fine even though I had a baseball in my boob....34 & no family hx.  I guess I just have some unanswered questions about it also and my dr or counselor didn't explain much to me, so maybe ya'll may know.

    1.  Does anyone know if our reoccurence rate is any higher than a non-brac?

    2.  Does anyone else feel like all that no-sugar, limit alcohol, exercise, etc stuff is somewhat useless for us or will it help?

    Thanks, I wish I would have found this forum earlier :)

  • MRDRN
    MRDRN Member Posts: 177
    edited July 2011

    You know I found out about my gene from my skinny health conscious cousin.  She is TOTALLY into the whole foods, eating right, and worked as a social worker and by the grace of God she told us so we could catch ours early.  She has taken PARBs and is a really strong lady who has endured so much with ovarian.  Genetic Counsellors are very good to call and discuss your questions specifically and search this site.  I also put a google alert for "BRCA gene" and every day I get an article that comes to my email.  Good luck

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited July 2011

    Jenny -

    If by reoccurence you mean "mets" then the answer is no.  But we do face a higher chance of reoccurence in any breast tissue left.

    As for your second question about risk, I personally believe we hit the jackpot on that.  So if it feels good to limit sugar, alcohol and get some exercise then do it.  If you do it out of guilt then you're adding stress which is another risk factor.  Personally, I'm trying to increase the exercise becaue it feels good to me.

  • MRDRN
    MRDRN Member Posts: 177
    edited July 2011

    Yes, increasing exercise is never a "BAD" thing, however it is the gene's that are the culprit not necessarily your choices, so it does give some comfort....sort of like, you don't pick your family, you don't pick your genes.  That is interesting that you have no others in the family though.  I have several who went before me which helped my early dx. 

    we actually have a higher recurrance rate to pancreatic (low but more than gen population), colon, and so forth....I had a booklet here and will try and find it.  

    I am sorry that you were so young when dx.   Have you had  your ooph yet? 

  • Paula66
    Paula66 Member Posts: 1,572
    edited July 2011

    Hi all!  I just found this page and am happy to see it.  Heres my question for you all.  I tested positive for BRCA2 and I have kids.  How do you all handle that emtionally.  Some days I am glad I found out because of how I was going to proceed with treatment.  Other days I am feeking guilty that I may have passed this on to my children.  If any of you have gone thru this how have you dealt with it.  We do have a strong family history of BC and I am the 4th on to have it.  I found it in my 40's, but my sissy found it in her 30s.  Thanks so much.

  • jennyboog
    jennyboog Member Posts: 23
    edited August 2011

    @ MRDRN...yes, I did my ooph in June and have finished all active tx.  I read about the other cancers increased rate.  It is weird right...I've actually wondered if they did my test wrong or mixed up my specimen or something. 

    @ paula66....I feel the same guilt for my girls (5 & 3).  I want them tested so bad but they recommend them being older but even then how do you tell a 18 year old she might have this, it's tough.  And from what I've read they need to start MRI/mammo's 6 yrs before my dx so that would make them 28.  I just hope and pray they find a cure before they might have to deal with this.

  • Paula66
    Paula66 Member Posts: 1,572
    edited August 2011
    jenny I remember my mom breaking down in the oncs office while we talked about it.She felt this was all her fault, that 2 outa her 3 daughters have BC.  Her mom, her sister, and my sister all losta breast too.  She got a bouble whamy. She had one removed, then 2 years later she had to have the other one removed as well.  I know my daughter and son are old enough to understand this.  We have several conversation about their risk.  My daughter is at an age that she does need the testing done.  She is 21.  I feel she is oid enough to understand what it means.  My son is 18, but I dont know if he is at the point to really understand the risks.  Thanks so much for the help!   
     
     
  • malucho1
    malucho1 Member Posts: 2
    edited September 2011

    I have mutations 886delGT. Same as BRCA1953. Seeking more info on this so please message me if you have this mutation! Thanks!

  • LisaLisaLisa
    LisaLisaLisa Member Posts: 4
    edited August 2011

    I am BRCA2+ 6174delT deleterious.  I am of Ashkenazi Jewish descent. 

  • luluslackey
    luluslackey Member Posts: 1
    edited September 2011

    missesweetheat, I just saw your post. Hope the oophorectomy went well and the options for BC risk reduction are sorting themselves out. I share your mutation and know how difficult these decisions can be. There's an exon 13 ins 6kb thread over at the FORCE message boards with a number of posts if you're in an investigative mood.

  • rachelvk
    rachelvk Member Posts: 564
    edited September 2011

    I figure I'll be back later to post my results... I got a call that my results are in, but I missed the call, and the doctor had left by the time I called back. I'm 42 of Ashkenazi descent, and my great-grandmother died of ovarian cancer, my great-grandfather of prostate cancer, and my great-aunt died of breast cancer. So.... I'm betting I'm positive, but we'll see. I think this was a great thread to start.

  • rachelvk
    rachelvk Member Posts: 564
    edited September 2011

    Results back - 6174delT BRCA2.

  • x-raygirl
    x-raygirl Member Posts: 97
    edited September 2011

    E 1953X (6085G>T)  deleterious

    Amy, same gene as you.  I was surprised to see someone else with the same one.  Hope your sister's diligent.  I was tested after BC.  Found a lump 5 mos after my last mammo and tumor was 6.2 cm.  Lobular carcinomas are easy to miss on mammos.

    CYDZ ~ WOW!  Both my parents immigrated from Lithuania!  I'm going to look into what you said about the Baltics.  I still have to contact my cousins.  In fact, I have many of them in Lithuania still.

    Paula ~ I'm wondering if you have talked to your kids.  My older 2 daughters are 18 & 20 and I think I'm going to do it soon.  Perhaps Thanksgiving.  Any suggestions, input, advice?  Knowledge is power!

    I'm glad I found this thread!!!! 

  • Paula66
    Paula66 Member Posts: 1,572
    edited September 2011

    Hi xraygirl!  We have always been an open family about almost everything, and my kids knew every step of the way about the testing and the out come.  I still talk to my daughter on a regular basis about having the testing done.  My son I have also is also aware of it.  I want he to consider it as well.  He is still abit young and thinks like a guy, but he still needs to be aware that his risks have gone up now.  I felt they were both old enough to hear the whole story so I just laid it all out to them both.  I felt that this wasnt something to skip over any of it for them.  I showed them my testing paper and what the ONC went over with me about them.  If I could I would have them tested ASAP, but this is something they have to do.  I remember being 18 and 21 thinking that I had the world in my hands. Good Luck with talking to them.  Even its if just a short talk at least they will know what could be going on with you as well as them.

  • x-raygirl
    x-raygirl Member Posts: 97
    edited September 2011

    Thanks for your input Paula.  My 18 y/o is living at home going to community college.  I could talk with her and really want to.  My 20 y/o is gone to college.  Do you think I should tell them at the same time or individually?  I have a feeling my older one would be upset that the other one knew first (but not visa versa).   Hmm....

  • Paula66
    Paula66 Member Posts: 1,572
    edited September 2011

    I really think this is something that needs to be done face to face.  If your older one would be upset I would wait until they are together.  This away,if there are any questions she will be right there.  I always found it easier when it came to family news to tell them both at the same time.  They will have questions of course when they are thinking about it on their own.  Have you been to FORCE yet?  That is a very good place for them to go if they want info about it.  It really helps me out alot also!

  • x-raygirl
    x-raygirl Member Posts: 97
    edited September 2011

    I just started checking out FORCE.  Wow!  What a great informative site!!!!

  • pmiller1
    pmiller1 Member Posts: 1
    edited September 2011

    I am BRCA1+ e1694x

    as my  g-ma, 2 sisters,  - passed and 1/2 sister, niece and son  - stage 3

    san diego,calif,  had opp and thinking about  bil lat- mas....now  abronal cells in urine any ideas????  

    scared in san diego,ca.

  • veggiebab
    veggiebab Member Posts: 2
    edited September 2011

    Hi I'm new opn here and came up positve for BRCA 2 after I'd had primary breast cancer because my Mum died ovarian cancer and my paternal aunt from breast cancer.

    I was just feeling proud of being a 2 year survivor when I had a banfg on my head and ended up in hospital with a brain bleed and they guessed it was caused by my breast cancer and referred me to my oncologist.I was taken off tamoxifen as it wan't doing me any good. If I hadn't banged my head I may have been dead now.

    Iwas treated with chemotherapy and am doing fine now.

    I was angry with myself as I'd spent a year plucking up the courage to have wwhat we call a pbm and my plastic surgeon who is the best had a  month waiting list.Ihad my inplants ready for me and was shortky to have it done when I banged my head.In fact I was called in for the surgery 3 months later. I now feel like this bloody gene mutation is killing me. 

      

  • jennyboog
    jennyboog Member Posts: 23
    edited September 2011

    My daughters had appts this week and I asked the pediatrician about having them tested.  She said, "would it make a difference, they are already at risk from #1 just being a female and #2 because you had bc at 34, so nothing will change whether they carry the gene or not"  I mean I understand what she is saying but at the same time I sorta want it done.  I've worried though if I find out one has the gene will I treat her different, you know be like overly protective and make her eat super healthy.  

    Also, my mom went to the dr a couple weeks ago and asked about being tested due to I had BC and we're wondering where it came from.  Bascially she was told the same thing....wouldn't make a difference and then told my mom that it would effect her getting insurance in the future.  It seems the dr's don't want to do the test. 

  • hannah423
    hannah423 Member Posts: 4
    edited September 2011

    There is such an age difference between me and my sister and brother and my sister asked my mom to get us tested when she was 21 my brother was 19 and i was 10. my mom refused because she felt we needed to get tested and have eachother there for the support. I just found about a couple months ago that i am BRCA2+ good luck to you all! 

  • Paula66
    Paula66 Member Posts: 1,572
    edited September 2011

    jenny I understand about your kids.  I think when they get older they need to know.  It can help when they need to be proactive if they do have it and how are they gonna know if they dont get tested. I know that you arent suppose to be denied insurance based on gentic testing, but thats not going to stop them from jacking the price up or deny you for some other reason.  There was a law put into effect that they cant deny you insurance based on genetic testing.  I dont feel its anyones business if I have been tested or not.  The whole just because you have breast deal bothers me. You have had BC at such a young age and I for one feel strongly about knowing what your choices are once you get tested.  I do know my Onc thinks its a good idea to wait until they are in their late teens before they have it done. My older sissy tested negative and I am happy for her.  I did let her know that just because she did test negative doesnt give her a free ride.  She has a heavy history of BC in our family so I know she'll stay on top of things.

    Good luck hannah!

  • lois813
    lois813 Member Posts: 1
    edited October 2011

      2800delaa  BRCA1    seek match

    I am the only one in my family so far with this.  Write me. Thanks !

  • Grace_is_more_than_a_name
    Grace_is_more_than_a_name Member Posts: 1
    edited November 2011

    BRCA2. 690delAA

  • QuinnCat
    QuinnCat Member Posts: 408
    edited April 2012

    I am BRCA 2 - 886delGT

    Same as brca1953 and malucho1

  • ThisTooShallPass
    ThisTooShallPass Member Posts: 26
    edited December 2011

    4154delA mutation in the BRCA1 gene

    Cydz & I have the same one!