I’ve been talking to a lot of people I’ve met through the BRCA online communities and through my surgeon’s office. I’ve had phone calls, emails, and chats with brave women who have undergone preventative mastectomies. They have been so nice in sharing their time with me, some spending over an hour with me on the phone answering my questions. As important as evidence based research is, nothing beats talking to someone who has gone through what you are about to. Thanks to the Funk Buddies program, the Pink Pal program, BRCA Umbrella, FORCE, and BRCA Sisterhood.
My friends and family have been asking me a lot more questions about my mastectomy – which I’m really happy about. A big part of the reason I went public with my journey was to educate others about BRCA and being proactive about your health.
Today, one of my friends told me that I was the only person he had met who was excited about having a mastectomy. The truth is, I am scared as sh*t about the actual surgery and recovery, but he was right that I am weirdly excited about it. I’m really really looking forward to having it be in the rear view mirror. I’m excited because my breasts kind of feel like ticking time bombs at this point and I’m eager to lower my breast cancer risk so much. Thankful that medical technology is as incredible as it is. Thinking about how lucky I am that the BRCA test even exists, if my grandmother or great aunts had these options, maybe they would still be alive. Pumped up about having some fun celebrations before the big surgery. Feeling humbled by the offers to come over and help during my recovery, receiving thoughtful recovery gifts, and friends offering to stock our pantry up with snacks for my hubby while he’s taking care of me.
It seems odd that I could be excited right now, but I’m focusing on the end-game of no more anxiety provoking mammograms or breast MRIs and going from an 87% lifetime risk of breast cancer to around 1%. I also choose to be positive instead of worrying too much because I’m a big believer in the power of positive thinking and energy. I’ve been getting so much positivity from my friends, family, and online community and I’m just so thankful. And to quote one of the greatest shows ever….
Since going public about my BRCA journey and decision to have a prophylactic mastectomy, I have met many people who’ve told me they are debating whether or not to get the genetic test. I know it’s a scary thought to think you may test positive for a gene that means you have a higher risk of getting breast and ovarian cancers than the general population. Personally, when I learned about this BRCA gene and test option in 2007, it was not a hard decision to get the test. I’ve always been someone who likes knowing as much as possible about my health. But, I know tons of people feel the opposite way. I encourage everyone who is high risk to get the test. Here are some of the reasons why:
- If you test positive for the BRCA gene mutation, it does not mean that you will get cancer. Many many people with the BRCA mutation never get cancer.
- If you test positive for the BRCA gene mutation, it does not mean you have to go out and have prophylactic surgical procedures. Having a prophylactic mastectomy or oophorectomy is an individual choice and one that is not the right choice for everyone. At least if you know you have the BRCA genetic mutation, you can have this conversation with a specialist.
- If you test positive for the BRCA gene mutation, you can then follow the screening protocol for BRCA mutation carriers. This means you are doing a great job of preventing cancer by following screening guidelines.
- I have been getting mammograms, breast MRIs, pelvic ultrasounds, CA-125 blood tests, and full body dermatological exams every year since I turned 25 – and it was all covered by insurance! This is because I have the BRCA 2 mutation. Knowledge is power.
When I was at the FORCE conference, I was at dinner with my conference roomie and new friend I made. They were talking about what kind of mutation they had and spouting out all these numbers and letters and saying things like “Swedish founders.” I had no clue what they were talking about and asked what it all meant. They let me know that there are tons of variations within the BRCA gene and there is a series of letters and numbers below the gene mutation that indicates which variation you have.
I immediately emailed my mom because I know she had a copy of my genetic testing paperwork (thanks mom for being über organized) and asked her to email me my “mutant code.” She responded really quickly with the code – 6174delT. She followed up with “ps- mine is the same.” Once I got back to the hotel room, my conference roomie helped me to look up the gene. As soon as I entered the sequence, lots of results populated on Google. Turns out, my specific gene is the Ashkenazi Jewish founder mutation. From what I understand, this means that when the Ashkenazi Jewish population was decimated and started to repopulate, the 6174delT gene carried on. Or, according to Berkeley “A founder effect occurs when a new colony is started by a few members of the original population.”
This discovery was really interesting to me and I’m looking forward to doing more research on it!
I was lucky enough to go to a workshop with filmmaker Joanna Rudnick at the FORCE conference. Her documentary, In The Family follows Joanna’s journey after learning she has the BRCA genetic mutation at the age of 27. The doc is really powerful and also follows other people’s BRCA journeys in addition to Joanna. The doc is streaming free for the rest of June. Check it out here.
I’m back in LA after an amazing FORCE conference and wanted to update you on day two. Day two included my favorite session – Revealing the Story within. This was a writing workshop with Documentary filmmaker Joanna Rudnick (I’ll be posting about her doc shortly) and Boston College Professor Amy Boesky. It was really interesting to see how writing by hand brought a different emotion from me than writing on the computer. Hearing everyone else’s stories was also very emotional for me. A lot of people at the conference didn’t find out they were BRCA positive until they were diagnosed with cancer. It makes me even more thankful and empowered to know about my genetic mutation.
This was an incredible conference and I am so thankful to have been able to attend.
Yesterday was day one of the FORCE conference – which is all about hereditary breast and ovarian cancers. So far, it has been an awesome and sometimes overwhelming experience. Most everyone attending the conference is a cancer previvor or survivor and there are 750 attendees this year! It’s been really nice to meet so many people who have the same genetic mutation that I do, it’s an instant connection you feel.
I’ve learned so much about the mastectomy itself – prep, potential complications, things to have handy around the house (think dry shampoo and hella DVDs). I attended sessions about mastectomies for prevention and treatment, psychosocial aspects of surgery, and fertility and planning for BRCA carriers. I also went to a “show and tell”, where I got to see/feel all sorts of boobies and ask questions about implant types, reconstruction types, and more. I will definitely be blogging more about what I’ve learned throughout the upcoming week. Follow me on Twitter for live-tweeting from the conference.