Thursday, February 28, 2013

BRCA whaaaattt?

Well first, thank you SO much to everyone who has sent messages of support, encouragement, and gratitude toward what I am sharing via this blog – I had absolutely no idea how many people I would be able to reach. I have received emails from women who have been in my shoes already – and tested positive for the BRCA gene mutation - including a woman who opted for preventative surgery, but also a woman who chose not to. So it’s great to hear stories from both choices. And of course it has also been beneficial to hear from women who tested negative, too. Then also to hear from women who need to get tested but have just not been able to take that step yet (because it obviously isn’t always an easy one). I guess you could say someone from every choice or outcome.

Blog Shares! Bright Pink (organization which I discussed in my last entry) shared my blog on their Facebook page (they have over 18,000 followers) – SO cool, thank you! It has been so helpful to read stories from fellow Bright Pink ladies. I also received such a nice, encouraging response from Bright Pink founder, Lindsay Avner. It means so much to have this amazing organization behind me, helping me remember to feel proud for speaking up and sharing my story.

Then I received an email from a Myriad Genetics Patient Education and Advocacy Educator yesterday. I was shocked! Myriad is the ONLY company right now (I hope i've got that info right) who performs the BRCA genetic testing. I couldn’t believe that my blog had reached them. They would like to share my blog on their blog, and have me be a guest blogger. What an incredible honor!
For a split second it was a little scary when I was getting such an immediate, overwhelming response…because I realized just how many people may read this. Yikes…sharing everything…with the word. But then I hit myself and remembered that IS why I am doing this. To reach any and everyone who has been affected by this in one way or another. To be called things like “inspiring,” and “courageous,” over the past few days by some pretty important people, is beyond words. Because I just feel like an everyday, average person – who happened to decide to write my thoughts down rather than bottling them up in my chaotic brain!

Ok that first part of this entry took a little longer than I thought…now onto the bigger purpose of this entry. BRCA whaaaaat? I realize many people may be thinking what is this BRCA thing she is talking about! Well…everyone has the BRCA1 and BRCA2 genes. It’s people that have a mutation in these genes, who are at an increased risk of breast/ovarian cancer. I thought it would be easiest (and most accurate) to share the following from Mayo clinic - http://www.mayoclinic.com/health/brca-gene-test/MY00322:

“The BRCA gene test is a blood test that uses DNA analysis to identify harmful changes (mutations) in either one of the two breast cancer susceptibility genes — BRCA1 and BRCA2. Women who have inherited mutations in these genes face a much higher risk of developing breast cancer and ovarian cancer compared with the general population. The BRCA gene test is offered only to people who are likely to have an inherited mutation, based on personal or family history, or who have specific types of breast cancer. The BRCA gene test isn't routinely performed on women at average risk of breast and ovarian cancers. Having a BRCA gene mutation is uncommon. Inherited BRCA gene mutations are responsible for about 5 percent of breast cancers and about 10 to 15 percent of ovarian cancers. After having a BRCA gene test performed, you learn whether you carry an inherited BRCA gene mutation and receive an estimate of your personal risk of breast cancer and ovarian cancer. Genetic counseling is an important part of the BRCA gene test process.”
Another site with a wealth of information – Myriad (the company I mentioned earlier). If you click on this link, there is a simple chart that may help others better understand if they are or are not considered high risk. As you can see, it IS rare – so please don’t be scared by my blog or immediately think you need to be tested! According to Myriad, only about 7% of breast cancer and 11 - 15% of ovarian cancer cases are caused by mutations in the BRCA1 or BRCA2 genes. http://myriad.com/treating-diseases/hereditary-breast-cancer/
Lastly, my appointment with the genetic counselor is on Friday. Ill do a posting all about the appointment and what to expect, for all those wondering! I went through the counseling appt. part of this whole process last summer (mentioned in my first entry), but now that my mom tested BRCA positive, I guess I need to start the process over and do the initial appointment again. I realized today it will probably be completely different, since I am going into the appointment with new information and my risk of being BRCA positive is now 50/50. The actual test part (which ill do Friday as well) is just a simple blood draw. Well…there is no such thing as simple blood draw to me– I am sure it will be dramatic and ill think I am going to faint as usual.  My mom will be going with me so at least she can buy me some candy and orange juice ;-)
So…over the next few weeks I plan to do postings about – Genetic Counselor appointments; To know or not to Know (first hand examples from people); What happens if someone is BRCA positive – options, etc…and more. I also hope to have a few guest bloggers.
And of course the MOST important – please keep my mom in your thoughts and prayers (as so many of you already do every day), as she fights breast cancer for the second time. She had her first chemo treatment last week and her next will be in a few weeks. She will have a total of four treatments. She is doing great though and always in good spirits! :)
I wrote this blog last night and will post another one tonight (if I don't fall asleep after work - because I am exhausted from staying up too late browsing Pinterest lol) about my morning and something else I thought I would share.

3 comments:

  1. Hi...yes I just posted a new entry. I needed to give my mind a little rest :) Thanks for reading!

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