BRCA 2 positive

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hannah423
hannah423 Member Posts: 17
edited June 2014 in Genetic Testing

I am currently a 20 year old female who just recently found out that I have the BRCA gene. At first I was unsure of how to react to the situation. My doctor thinks i should practically chnge my lifestyle. Stop eating processed foods, taking lots of vitamins, losing weight, and starting a progesterone and estriol cream. She thinks I need to take a more of a holistic approach on it in order to prevent getting breast cancer. However, I would love to be a 20 year old and kind of let all of the information sink into my head. All of it is still new and everything happened in one month. Any suggestions on how to let the information sink in and become comfortable with it?

Comments

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited June 2011

    Check out the force website www.facingourrisk.org/

    you wil find good info there. 

  • IllinoisNative
    IllinoisNative Member Posts: 125
    edited June 2011

    I agree with your doctor.  There are lifestyle choices you can make that may improve your odds.  I have BRCA 2 and I'm first generation...which means I have no family history.  I was diagnosed last year and I'm 36.  I haven't always made the best choices.  But keep your weight under control because excess weight increases your estrogen which can lead to cancer.

    Good luck!

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    My view is a little different. 

    I grew up hearing from my mom that "cancer is in our family".  Last year we found out why - both her and I (and proabably my sister who is gone) have a BRCA 2 mutation.

    When I look back on my life I've asked myself if I would have done anything different if I had known when I was 20?  The answer is no.  It so happens that I did follow many of the guidelines that reduces the risk of BC such as having two children, breastfeeding, maintain a slim figure through healthy eating.  But over the last 30 years I've also seen a lot of recommendations come and go.  At one point it was coffee.  Don't drink it!  Then they decided it was OK.  Well, I wasn't going to give my coffee anyway.  And broccoli.  No way am I going to give up broccoli!  But they decided that was OK, too.  And yes, I've had my share of alcohol.  Too much at times when I was youg, but it's been moderation for many, many years now.

    If I had followed all those guidelines from years past would I have avoided BC?  Who knows.  But what I do know is that I never lived my life in fear.  If I eat healthy and exercise in my garden it's because I want to.  Not because I feel I have to.  A life of fear and guilt isn't worth much.

    But (and this is a big "but") I do believe that knowledge is power.  My recommendation is to go to a cancer center that provides genetic counseling from doctors who explain all your options and considerations.  Not only the items that best reduce your risks, but also cover potential treatment paths for the future.  In Seattle, at SCCA, the have a program where you talk with a gynecologist onc, breast surgeon and oncologist who either specialize in genetic cancer or have an emphasis in the field.  They discuss with you the pros and cons of survelliance, oophrectomy, estrogen depletion, etc. 

    My daughter is 30 and just started high risk survelliance.  She has chosen not to be tested at this time and I respect her decision.  But she knows that 35-40 is when she needs to be prepared, if she tests positive, to consider an ooph, possible hormone therapy, use of an AI or just continue survelliance.

    I'm sorry that you tested positive.  But you still have a lot of life ahead and should have every reason to believe that you will become a "cranky, crabby old lady"!  

  • hannah423
    hannah423 Member Posts: 17
    edited July 2011

    Well, I am almosty 110% positive as to why i tested poitive! My mother was diagnosed with breast cancer in 1989 not expecting to have anymore children and then finished chemo and radiation in 1990 and had me early in 1991. I was so mad at my mom when i found out that i was the only one of my siblings that tested positive for this gene. All i could think was what the heck! How is it possible and i kept telling her she needed to not have me because at that point in time i thought it was life or death for me! I was unsure on how i was going to live my life knowing that i have this. Then i had to let the information set in. Then i had the thought of well i'm happy now that i know and this is something that my mom and i share! Not that its a good thing to share but this is something my mom specializes  in. She is a holistic nurse and has survived breast cancer twice! So, if i am going to be looking at life through these eyes at least i know she will be right by my side with this.

    My mother is one of 9 children. When she found out that she tested positive for this gene she called her siblings. One of her sisters passed away from breast cancer about 6 years ago and my mom stuck by her side like no other. All of her siblings that i know of have tested positive. So my mom kind of chuckles when i say, "at least we have eachother by our side!" One of my moms sisters is now going through her second round of breast cancer right now. 

    I am trying to better my life but when i went and talked to my primary care with my mother she practically told me it was life or death for me. She was very intense and made me never want to think about it or talk about it ever again! And my mom tried to explain to me that she doesnt specialize on this kind of thing and that i need to seek out information on my own! So i found this website and i absolutely love it! I try to work to keep my mind off things cause i'm still not fully comfortable with this. But i just want to know how everyone else gets through life knowing they have this. i dont want to change my lifestyle drasticly. I am 20, i like to go out and have a good time and have a couple soda pops here and there but if anyone knows of any websites that you live by or any specialists around upstate new york please let me know! i am open to anything!

    I am curious to know about the SCCA more. If there is something like that around upstate new york!  

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    I have to admit  - I'm envious that you have a mother who is a holistic nurse.  I would imagine that she has insight into a lot of the physical and emotional things that we go through.  Does she have a particular area of expertise?

    I also got a chuckle about how how your mom and you have something to share.  It's sad why to have it happen, but this has brought my mother and I much closer.  Like you said, we have something in common.  Mom has gone through two bouts.  The first one was stage 0 with DCIS at about 50.  The second was stage I about a month before my dx when she was 80.  The irony is that she has been taking Femara and doesnt' have any issues.  I, on the other hand,  have been taking Aromasin and recently stopped.  My next visit with the onc is tomorrow to talk about starting on Tamoxifen.  I have a competitive streak and it bugs me that my 82 year old mother can handle an AI better than I can!

    SCCA is Seattle Cancer Care Alliance.  It's an affiliation of Fred Hutchinson Cancer Center, Children's Hospital and the University of Washington.  I'm sure that you have cancer centers in your area.  The National Cancer Institute (NCI website) is full of great resource information and lists the cancer care center associated with NCI.

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html

    Another good website for the genetics side is Facing Our Risk at http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html

    They deal with the issue of hereditary cancer.  It contains a lot of information that pertains to younger individuals, such as yourself, who have to live with the knowledge that they are in a high risk category.  This website is more about the women (or men!) who have actually been diagnosed with breast cancer.  And the women who frequent the site are often the women that are having issues, whether emotional or physical.  So it's not necessarily representative of breast cancer.  There are other women out there (such as my Mom) who handle it quite well and move on with their lives.

    I hope this helps!

  • hannah423
    hannah423 Member Posts: 17
    edited July 2011

    My mother is super knowledgeable and i absolutely love it. I remember when i was young going to her yoga sessions or her reiki sessions (shes a reiki master) and i always wanted to grow up to be just like her! And i'm unsure if she specializes in any specific areas. She founded something called the springs. Which is a holistic healing center in clifton springs hospital in clifton springs new york. They do sulfur baths, acupunture, reiki, baths of all sorts, facials, chiropractics, everything you can imagine! And everything is all natural. 

     http://www.thespringsofclifton.com/

    She is truly an amazing woman! However, we have come a lot closer. We never really saw eye to eye. So now knowing this i rely on her a lot. I have always told her that my sister was her favorite and she always told me to stop saying that. She never plays favorites. 

    i just want to speak to an actual specialist on this. I dont wanna just talk to my primary care who can give me the common sense and kind of talk to me like i am an actual cancer patient. Like she did! And that annoyed me beyond belief! I also found the website be bright pink which is based towards the younger generation. They do peer to peer communication and stuff. So i'll try and check everything out! I appreciate everything.

    http://www.bebrightpink.org/home/ 

    I just am not sure how to handle the situation. I am still confused and i dont know how to explain things to my boyfriend. I also have something called polycystic ovarian syndrome and would like to know that if having this gene had caused this or if its just something i have! So i would love to find a specialist! 

    Thank you again!  

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