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 force.com 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!

Amy

Test Results

If you didn't know, my mom was diagnosed with breast cancer just about 1 year ago.  She has gone through chemo and radiation treatments and so far things are looking positive.  Her lump was caught early, unlike my grandmother her mother, who almost 6 years ago died of breast cancer.  Since my mom got diagnosed, she also got tested for the BRCA gene.  She got confirmation that she is a carrier for the BRCA 2 gene.  Currently, in my family, my mom, my grandmother, my grandmother's twin sister, and my great grandmother all have had breast cancer.  My grandmother's younger sister also had and died of pancreatic cancer, which the BRCA 2 gene puts you at higher risk for.

Now that my mom got tested, my sisters and I had to decide if we were going to get tested.  At first, I was leaning totally against having the gene test.  After talking with my doctor, I decided that it would be better to find out if I had the gene, because with my family history, without getting tested, I would need to have increased testing to ensure that things were caught early just in case I was at higher risk and didn't know it. I got met with a genetic counselor right after Christmas and with my husband decided to have the test.  Just about a week ago, I found out that I tested positive for the gene.

I wasn't totally surprised at the results, but I was still in shock from actually seeing it on paper and having one of my worst fears confirmed.  Of course, the immediate recommendation was to have a bilateral mastectomy and oophorectomy.  I was told that I needed to meet with an oncologist and discuss my options.  If I decided not to have surgery, I need to have a mammogram and a MRI every 6 months alternating each time.  If I don't have the oophorectomy, I need to have a trans-vaginal ultrasound and a CA-125 blood test every 6 months.  Even though I don't have cancer, I left that appointment feeling like I had been given a a death sentence, especially if I didn't have surgery.  Not exactly a great feeling to have especially not actually having cancer. I thought that since my family tended to get cancer later in life, I have a decent amount of time to decide, but no, they just lucked out (if getting cancer at all can be considered lucky) and got cancer later in life.  The BRCA 2 gene tends to cause earlier cancers, something I did not expect to hear.

I am still trying to figure out where to go from here.  I have 3 small kids and a great husband.  I don't want to get cancer.  I don't want to go through the pain and suffering and even potentially die, but I also don't want to have surgery.  There are too many reasons to go into right now, and at some point I will probably write about it just to put it in words that I can actually read.  My New Year's goals go along with the changes that I want to make especially now that I have tested positive for the gene.

My diet needs to change and so do my exercise habits.  I have joined in with another twins mom's blog for a healthy challenge.  I am hoping that this challenge will help me make the changes that I need to make and hopefully make theme stick.

Amy