Thursday, March 15, 2012

On Being a Previvor

If you didn't know, I recently found out that I am a "previvor".    A previvor is a term, I believe, that was founded by to designate a term for people who are positive for the BRCA gene.  I now am faced with the decision to have prophylactic surgeries to remove my ovaries and my breasts.  This has been something that I have thought about for the last couple of months.  I had started thinking about it before I got tested, but the reality of this is just finally hitting me.  Last night was really the first time that I allowed myself to break down.  I was out doing my walk/run and in the middle of it, I broke down and started crying.  I started talking to my husband about what happened and he said I really need to do research and figure out what I need to do for me and that he will support me in what ever decision I make.

If you couldn't tell by the name of this blog, I believe in living a more natural life, but I also believe that there is a balance that needs to happen when living a natural life.  This decision is one area that I believe needs to be balanced.  I don't think that it is an easy decision to make: to either have surgery to remove parts of my body, that for a lot of women including me, are part of who we are as women or to use more alternative means to prevent cancer, breast and ovarian.  Right now I am leaning to not doing surgery with the potential of maybe having my ovaries out, but not having my breasts removed.  I have felt that this was going to be the way that I would go from the beginning, but I am scared of making the wrong decision and getting cancer and leaving my husband and 3 young children before it is time all because I made the wrong decision.

The New Year's goals that I have written about are based a lot on my BRCA2 + status.  I think that if I can work harder on these goals and actually meet them or at least continue working on them, I have a good chance of preventing cancer.  There is a lot of writing out there about having a gene and getting cancer.  There is also some information on how your genes are not your destiny.  I am hoping that I can make changes to my life to help change my genetic destiny.  I need to do a ton of research, and I need to find people who are on the same page as I am.  I haven't really figured out how to find these people, but I am hoping that there may be a group that I can find, maybe a support group type forum that actually meets in person.  I love that the internet allows for all sorts of info, but I really want to meet people and talk to professionals in person.  

Wish me luck on my research endeavors!


  1. Hi Amy, there is a book: Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny, published by Johns Hopkins Press that is all about the options (and includes a section on diet/exercise/lifestyle) and also contains all the latest research on BRCA. Here is the link on Amazon:

    Additionally, the link for FORCE is I hope you will stop by the site, we have many programs, information, and resources for people with a BRCA mutation.

    Be well!


  2. Hi Amy,

    I thought I'd second Sue's endorsement of her excellent book. It's well worth buying.

    In addition to the book and the FORCE website, you may find the information at BRCAscoop to be useful. You can find our blog at:

    Best wishes,
    Matt Mealiffe

  3. Amy, I will be keeping you in my prayers... I know this is a hard decision. I actually have been putting off getting tested but I make sure I have a mammogram and Pap yearly.