I’ve been asked to share some of the websites and resources that I’ve used leading up to and after my surgery. I’ll keep updating this list, but here are a few for now. If you or someone you know has tested positive for the BRCA gene, these sites will help you learn about your options. I’m also always available to talk about my decision and experience in greater detail. I’m no doctor, nurse or therapist, but I know that hearing other women talk about their decision to have surgery (or not) was one of the most helpful things for me. I learned more (and still learn more) from other survivors and previvors.
- Are you a candidate for testing? This is an assessment tool on the National Cancer Institute’s website that can help you determine if testing is something you want to consider. http://www.cancer.gov/bcrisktool/
- There’s some controversy right now on the BRCA gene itself. The company that does all of the testing has patented the gene. So far, they have won most court battles and are able to keep the patent. Whether you agree with this or not, they have been (and are) the authority on testing. Here’s a link to their site: http://www.myriadtests.com/index.php?page_id=68
- The Center for Restorative Breast Surgery This is a site that helps with general information about the gene and testing. It’s a good starting-point to learn about the gene and early detection.
Other Girls Like Us
- FORCE is a nonprofit devoted to hereditary breast and ovarian cancer. I have learned a lot from their website. They provide support, education, advocacy, awareness, and research specific to hereditary breast and ovarian cancer.
- Be Bright Pink is another organization for previvors that focuses on prevention and early detection of breast and ovarian cancer.
There are a lot of us blogging about our experience. Here are some that I follow. These are some really tough women and you’ll notice that we all have so much in common, but we don’t all approach reconstruction the same way. Reconstruction is a very personal choice and there are many common procedures. As you do research on the best option for you, reading these blogs can help learn more about our experiences with the procedures. There are lots of blogs out there, so if you look at these, make sure to check out the ones they reference as well.
- http://www.onestepscoop.com/2009/01/generations-of-mean-gene.html This is a blogger that had a one-step procedure done.
- http://powerofourgenes.wordpress.com/ This blogger had a one-step procedure. This is a retired blog, but still public and very helpful.
- http://beingbrca.wordpress.com/ This blogger is my age and had surgery just a few days after I did. She chose to have a one-step procedure – as opposed to tissue expanders that I have done.
- http://www.claireandthegenie.com/index.html This blogger carries the BRCA2 gene like I do. She had a hysterctomy and oophorectomy and then chose to have a bilateral mastectomy. She had the TRAM procedure.
- http://previvors.com/ This is a blog and book. The book helped educate me so that I was better prepared for conversations with my family and friends.
- http://lianne-brca2.livejournal.com/ This blogger chose to have the procedure I had.
- http://inthefamily.kartemquin.com/– A documentary about BRCA+ *This movie helped my family more than anything else. It’s about a woman who has the gene and does lots of research about her options. In the end, she chooses to wait to have surgery and just continue with aggressive screening. This movie helped me become 110% confindent in my decision.
If you are preparing for surgery, here are some things I highly recommend you do (or get) when you’re preparing for your big day.
- If you have things on high shelves in your bathroom or kitchen that you use regularly, move them down so that you can reach them without having to raise your arms.
- Put a table or stand by your bed that is as high as your mattress so that you can set things on it but not have to roll over and reach down.
- BUY SATIN SHEETS! At least get a satin bottom sheet. It makes getting in and out of bed so much easier because you don’t have to depend as much on your arms to move you.
- Get some Arnica. You can find it in gel, cream or spray forms at places like Whole Foods. I would not get the spray kind for this surgery. Arnica helps with topical pain and bruising. You can put in on the bruise site, but I don’t recommend getting it on your incisions. It helped my hematoma heal more than anything else I did.
- Keep a notebook and pen around your favorite chair and your bed. You’ll think of random things to ask your doctor and will want to write them down before you forget.
- Invest in a few comfortable and pretty pairs of button-up pajamas. You’re going to basically live in them for a while. It just feels good to have on a nice new set of pjs.
- If your doc does not object to wearing toe nail polish in surgery, then go get a pedicure prior to surgery. You won’t feel pretty for a while, so having your toes painted is just something comforting to have done. My breast nurse recommended this to me and I’m so glad she did.
- Buy spray deodorant. It’s too hard to put on stick deodorant.
- When your doctor lets you retire the surgical bra and put on a sports bra, check out the zippered sports bras at Victoria’s Secret Sport and Sears.
- Go to a thrift or consignment store and find some button-up shirts that you can wear to work or just lounging around. You want to be comfortable but feel presentable when you go places. You don’t need them for a long time though so it wasn’t worth it to me to go to stores and pay a lot for a few shirts. It was getting warm here, so I bought a few sleeveless ones and two short-sleeved zip-up hoodies. You’re in button up shirts for at least 6 weeks. You might even need to wear them for a few days after fills if you have tissue expanders.