Got my BRCA1 positive today.

Options
JenniMack
JenniMack Member Posts: 3
edited June 2014 in Genetic Testing

Hello everyone. I am new here this is my first time getting on here. I am 23 years old and got a positive test result for the BRCA1 gene. Everyone on my mothers fathers side of the family has passed away from some fourm of cancer. My mother passed away in 2009 from cancer. My Dr. has given me a few different choices that I can do to try to prevent it. I am not sure what I would like to do and I would love to talk to a few different people and hear your story. I just had my first child. She is almost 3 months old. Her name is Julieann! I am trying to be ok with this because at least I can get a head start and keep up with it. I am trying to keep my head up. My husband does not know much about all of this so he does not know what I should do or what he wants me to do. I meet with my Dr. next Thursday and we will talk about it all then. 

· Share on FacebookShare on Twitter

Comments

  • Kodapants
    Kodapants Member Posts: 139
    edited February 2012

    I'm sorry to hear that you are positive but glad you know. God Bless

    · Share on FacebookShare on Twitter
  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    Jenni - I know you are so scared right now, but you are absolutely on the right track. Knowledge is power. I'm so proud that you are facing this demon head on. There is no doubt in my mind that Julieann's mama is going to be there for her until a ripe old age. Wow, I am so impressed at your courage, You are going to be a terrific role model. My brother is a gynocological oncologist and BRCA researcher and he has told me sad, sad stories of women in their thirties who just didn't know they had the gene. Take it one step at a time.

    · Share on FacebookShare on Twitter
  • learnin
    learnin Member Posts: 205
    edited February 2012

    Hi. Do you know about the FORCE website? www.facingourrisk.com

    My sisters are both BRCA positive, no cancer - and that is the site they used the most in sorting out their options. Hope it is useful to you.

    · Share on FacebookShare on Twitter
  • carrie12
    carrie12 Member Posts: 1
    edited February 2012

    I am 43 years old and found out I am BRCA1 positive before Christmas. I have decided to do a total hysterectomy Feb 22. I have to boys...5 and 2. It has been an emotional roller coaster!! Easy decision to do surgery since I am 43 and have two healthy boys! Being young like yourself would be hard but worth considering hysterectomy to reduce the percentage of getting breast cancer. You have a child so you want to watch that child grow up! Take care of yourself! I totally feel for you and don't wish this upon anyone!! Good luck in your journey! 

    · Share on FacebookShare on Twitter
  • shelleydf73
    shelleydf73 Member Posts: 4
    edited February 2012
    Hi, I also had a positive BRCA1 last summer and had a total hysterectomy immediately for the risk of ovarian cancer.  I am having a bilateral mastectomy Feb, 14th with the latissimus dorsi flap and implants at the same time.  It will be an all in 1 surgery.  I'm 38 y/o.  If I can be of any help, msg me back or email me Shelleydf73@aol.com
    · Share on FacebookShare on Twitter
  • Tigerg64
    Tigerg64 Member Posts: 54
    edited February 2012

    Shelley,

    I am due to have a bi-lat mastectomy on 3-27 with a latissimus dorsi flap plus implants also. Can you tell me how you are doing and clue me in on what I have coming my way? I am scare to death. I just got my BRCA tests back today BRCA1 positive but I also have bi-lat DCIS.  Needing someone who might understand. 

    · Share on FacebookShare on Twitter
  • tmcbr04
    tmcbr04 Member Posts: 1
    edited February 2012

    Hi Jenni, so sorry to hear about your diagnosis but i do believe knowledge is power and given your loss it is helpful to have something you can work on. I am currently recovering (almost 100%) from a double mastecomy that i had in November. I tested positive for BRCA1 four years ago and went ahead with the surgery last November. I am 25. I was terrified doing it. I had muslce removed from my back (latissimus dorsi flap) to build my breast back up and implants inserted. i had the removal and reconstructive surgery all together. It took about 9 hours in total. Tough enough surgery as u can imagine but definately worth it to know my risk of breast cancer has gone from +85% to 1-2%!! how are you feeling about everything???

    · Share on FacebookShare on Twitter
  • Layla2525
    Layla2525 Member Posts: 827
    edited February 2012

    Congrats on getting the test, every sibling of my mom had cancer except the youngest and my mom died of cancer also a few yrs ago. I had a bmx with TE because of that even tho I could have had a lumpectomy. You are young,you maybe could go on Tamox until the cancer vaccine is approved. Hoping science runs fast enuff to keep you outta surgery. Good luck baby girl.

    · Share on FacebookShare on Twitter
  • Cucho
    Cucho Member Posts: 42
    edited February 2012

    This is such a hard situation. I recently tested positive for BRCA1 after I was diagnosed with breast cancer at age 32. How I wish I had known before I had this BRCA mutation, but Id never heard of it before. I have no family history of the related cancers, so I never knew.

    I am about to start chemo and all the rest of the fun stuff, and after my chemo it is recommended that I have a double MX and go on Herceptin for 1 year since im HER2 positivem, all this in addition to 5 years of hormone therapy. If you are lucky enough to get diagnosd before you actually develop breast cancer, I would say by all means go for prophalectic surgery if you have that option.

    Getting breast cancer in your early thirties is a major interrumption to your life and it has immediate and significant social, financial, professional, psychological implications, in addition to your overall health and survival chances being compromised, and I am just talking in the short term right now. I would not wish anyone to live what I am going through right now. 

    · Share on FacebookShare on Twitter
  • hannah318
    hannah318 Member Posts: 23
    edited March 2012

    Can I ask how long it took to get your results. I have been waiting for just over a month. Sorry to hear of your news. I had my ovaries removed when I was 27 and never regretted it.

    · Share on FacebookShare on Twitter
  • Lisa-Jane16
    Lisa-Jane16 Member Posts: 1
    edited July 2012

    Hi, I am new to this, I am 40 and was tested last year and found out the I have the BRACA 1 gene.  I have got two boys aged 8 and 10.  My mother passed away in March from Ovarian cancer after a 10 year battle.  I am having my ovaries and fallopian tubes removed in September.  I am also having regular breast screening MRI and Mamogramms as this was the Doctors recommendation.  I have been advised that I will be nable to have HRT as this is defeating the object??? Has anyone else been told this, and is anyone else in the same position as me regarding early menopause?

    I live in Buckinghamshire, United Kingdom. 

    · Share on FacebookShare on Twitter
  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2012

    I echo Cucho's words on a BC dx, except I'd add, it's a major disruption at any age.  And once one has that dx, their life is forever changed.   After my dx and finding out I was BRCA2, there would be no amount of monitoring for future BC's that would be reassuring.  Monitoring to find an 80% inevitable cancer?   For many years I asked physicians about BRCA testing, but always got the reply "but what would you do different."  We all know the answer to that question, atleast as far as an ooph, but why didn't they?  It is wonderful that you got tested and can find these answers and be proactive before any cancer should occur.  It sounds strange, but I am so happy for you.  My aunt was BRCA2, did have BC, but she lived til she was 80.  You can lead a long life, cancer free!  I do think they encourage younger women to wait til their late 30's for the ooph, but I know more about brca2 and am menopausal, so I didn't pay much attention to these aspects.

    There is a wonderful journal published on line by a very young woman who had a Prophy NSBMX with TE's.  Maybe someone has the link?

    · Share on FacebookShare on Twitter
  • tibet
    tibet Member Posts: 545
    edited July 2012

    kam170

    How was your aunt when she had BC? Did she die of BC or old age at 80? thank you. 

    · Share on FacebookShare on Twitter
  • dusterella
    dusterella Member Posts: 50
    edited July 2012

    My genetic councelor suggested an awesome book...it's called Previvors: http://www.amazon.com/Previvors-Facing-Breast-Life-Changing-Decisions/dp/B004P5OOYE

    Highly suggest reading it! 

    · Share on FacebookShare on Twitter
  • lisa2012
    lisa2012 Member Posts: 652
    edited July 2012

    I found out I was BRCA1 positive in sept 2011, had ovaries out in November, had screening MRI in December,had MRI biopsy in January and was diagnosed with 8mm tumor, had BMX in February and the chemo in April.



    I did the test because a cousin and my sister had cancer and AFTER treatment the gene testing was brought up!! 4/5 granddaughters of dads mom, who died in 1948 of ovarian cancer, had the gene. 3 of us have now had cancer. If I hadn't gotten the test I wouldn't have known for a long while since my tumor was NOT seen in mammogram or ultrasound nor could it be felt by anyone.



    I guess I'm lucky, sort of.

    · Share on FacebookShare on Twitter
  • howhm02l
    howhm02l Member Posts: 147
    edited July 2012

    JenniMack - I am BRCA 2 positive.  I found out after I had a biopsy done for an enhancement on an MRI, which has now been diagnosed as DCIS.  My mom was 34 and her sister was 42 when diagnosed.  I am 40.  I had genetic counseling a few years ago, but I was waiting to see what would happen with healthcare reform before I had the test done.  I just happened to have had an abnormal mammogram prior to the BRCA results.  It is very overwhelming.  My gynceologic oncologist does not recommend the ooph  for women under 40 unless they have completed their family.  Because we have completed our family, I will be having BMX (propylactic on right side) and reconstruction.  Once that is complete, I will have an ooph (ovaries and tubes) and complete hysterectomy (uterus and cervix). 

    Because you are so young and likely have not completed your family, do not think that your only options are prophylactic surgery.  Talk to a genetic counselor and a gynecologic oncologist.  You are probably an excellent candidate for monitoring for the next several years, which could be an MRI and Mammo every six months spaced 6 months apart, and vaginal ultrasounds every six months. 

    In addition to the FORCE website, also check out Bright Pink, which is an organization for high risk young women.  Another organization is youngsurvival.org, which is for women who have been diagnosed with breast cancer who are 40 and younger - a word of warning - youngsurvival is for women who HAVE been diagnosed with breast cancer, but it can be an informative site because many of those women also have genetic mutations.

    · Share on FacebookShare on Twitter
  • stephy78
    stephy78 Member Posts: 1
    edited November 2012

    Why is everyone having surgery NOW? because of finding out they could possibly get it one day? Is that supposed to cure the fact you cant get it after you have surgery? Did your doc recomend surgery? I wouldnt think so. Is anyone from Huntsville alabama area and know where i can get a test cheap or a place that may offer them free?

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited November 2012

    stephy, there's more information about Genetic Testing Facilities and Cost at this link from the main Breastcancer.org site.

    · Share on FacebookShare on Twitter
  • lreith62
    lreith62 Member Posts: 18
    edited September 2013

    Had my BRAC testing done this past Wednesday August 13. Waiting for responses from others who have had this done at 51 and their mothers got breast cancer at 45 in 1977 and have any of the daughters had breast cancer? Waiting and nervous Linda

    · Share on FacebookShare on Twitter

Categories