The first thing I would like to touch on since my writing my 1st blog, is again; my purpose & reason for sharing this personal journey that I am on. For some reason, I just feel the need to express how I'm feeling, an avenue to pour my feelings into, what I'm learning, whether its in a notebook or online for the whole world to see. I just feel that sharing my personal experiences, feelings, and decisions will ultimately enable me to choose my destiny. So far my decision to have my mother & I undergo genetic testing, is going to allow my mom to have a better chance to live longer than she would have before. I chose to share because knowledge is power, knowledge has saved my life (although this is not a easy pill to swallow or digest), I am willing and eager to share my very public journey & I hope that my story will save many others. I just want to give anyone reading this a better understanding of what BRAC positive means, then it will all be worth it.
Wow! The past 2 weeks have been crazy. I've met with 5 different doctors & have had a huge variety of tests performed. I've been educated & have learned so much more about my BRAC1 mutation, it's hard to wrap my mind around this whole other world that is out there & that I am a part of. I received a lot of emails & people asking me "so you have cancer"? No, I do not have cancer however; I carry the genetic gene that causes breast & ovarian cancer which increases may chances drastically. Being BRAC1 positive is considered a "early onset" of cancer, it means I have a "faulty gene", it does not work properly.
To put this into perspective, my oncologist explained to me that the general female population has a 13% lifetime risk of breast cancer and 1.5% chance of ovarian cancer (1 out of 70). Being BRAC1 + puts you at a 85%-95% (1 out of 8) chance of developing breast cancer & a 60% chance of ovarian cancer. Women with the BRAC1 + gene are most likely to develop theses cancers before menopause.
Definition of the BRAC gene- BRAC1: A gene that normally acts to restrain the growth of cells in the breast but which, when mutated, causes breast cancer. the gene's full name is breast cancer 1, early onset.
The fact remains that there is no CURE for breast cancer, it kills thousands every year. My oncologist told me that genetic cancer comes earlier & more aggressive, and at a higher rate of recurrence. I keep my fingers crossed every day, hoping that a cure will be found for...my children, family, friends, & the world.
For me, I have 2 options:
1). Breast & Ovarian blood work, tests, MRI's, ultrasounds, & mammogram screenings every 6 months to monitor myself so when the cancer arrives, it is detected early.
(Think about it... imagine the anticipation you have when you go to your doctor to have you or your child tested for strep, flu, etc. Take that feeling, and imagine yourself waiting for the results to come back to confirm you do or do not have cancer).
2). Preventative Double Mastectomy with or without reconstruction & a preventative oophorectomy (removal of ovaries & tubes). Of course these surgeries come with many risks factors, worries, horrible pain, miserable recovery time, forced menopause, etc...BUT... this would reduce my chances of breast & ovarian cancer to a 1% lifetime chance.
As I mentioned in my first post, I've had my share of all of the tests associated with option #1 & the waiting game for test results and/or biopsy results IS NOT fun at all. It's rather very stressful for not only myself, my mother, friends & loved ones around me. I have had annual mammograms since the age of 25 because of my family history of breast cancer. I can tell you, not only does it cause stress during the weeks awaiting the results, but worry, difficulty focusing, unable to be the fun & crazy mother my kids are use to, not being able to give it 100%+ at work, to my bosses, co-workers, etc. BELIEVE ME, I'd much rather be the best mom, employee, daughter, aunt, friend, fishing, 4-wheeling, on the river, in the swamp or anything else rather than waiting on test results. Can you imagine going through that every 6 months UNTIL you get the one result that says you have cancer? I can't.
For the past 2 weeks, my breast specialist sent me to many different types of doctors for extensive testing & I also made my own appointments for consults to weigh both of my #1 & #2 options.
One of the 1st tests I had last week was a breast MRI. I was pretty nervous for my breast surgeon to take a look inside, I felt like there was no telling what she would find especially with this very clear & detailed screening.
My Breast Surgeon
As always, "My Support"
Mom saying, "Cindy Lynn, put that phone down".
Alan looking a little on the "nervous side".
MY Results
Holy Crap, I was terrified until I received the news that all were benign!!!!!
My Oncologist GYN
Last Wed. mom & I met with our new oncologist for the first time. She is the one who taught me so much more about BRAC1, she was so amazingly knowledgeable & detailed. She explained everything to mom & I so clear. Our risks, percentages, pros (not any) cons, options of surgery, what to expect with surgery, after surgery, etc.
MY Results
Another HOLY CRAP!!!!!!! I thought, not another test to be completed "in house", rushed, &
the results sent overnight to my doctor. After they discovered this cyst on my ovary, they called my doctor & she immediately ordered C-125 blood work on the spot. C-125 blood work will pick up any pre-cancerous or cancer cells throughout the entire body. To say the least, I didn't sleep at all & worried myself sick until I received my results that the cyst was not cancer & blood work was all clear. Whew!!!!!! Deep Breaths!!!!!!
The Plastic Surgeon
I thought this appointment would be a little less stressful, more on the "positive" side of all of all this. After meeting with the nurse for over a hour filling out paperwork & answering questions, finally the doctor came in. He spoke a little about BRAC1 & different reconstructive options that were available if that is the route I chose (Preventative Surgery).
I didn't realize there were so many different ways reconstruction is performed after breast cancer or preventative reconstruction. After 2 hours with him, & being marked on basically all over my body with a BLACK marker feeling like a project, I was about ready to just leave & go back another time. This was BY FAR the most confusing appt. with the most options, explanations, risks, decisions, etc. After quickly deciding I WAS NOT interested in learning about fat or muscle transfer reconstruction options, (I was about to puke from looking at the pics) I asked about simple implant options.
My Options
SERIOUSLY???????
THE Result
I told the doctor I would get back to him, went straight home & popped the top on a ice cold Ultra!!!
In the past 2 weeks, the one thing I do know for a FACT is that I'm not willing to take any chances. As of now, all of me & my moms tests have come back "ok", we both still have 2 more to do. No more risks for me - my risk is high enough. I will not go through all of these tests & screenings over & over waiting for cancer to rear it's ugly head. If I chose that path, I cant imagine waiting 3-4 months to receive the results & find out if the chemo "helped in any way".
Sorry for such a long post this time but there is so much going on so fast & I will try to keep up.
****Again****
If you or someone you know has a family history of breast or ovarian cancer please, please, spread the word for me. If they have at least 2 immediate relatives, they can get tested for the genetic mutation gene BRAC1 & BRAC2 for FREE as long as they have some type of insurance. My breast surgeons name is Dr. Legarde, she is located in Covington & performs the test right there in her office. I am so happy to say that so far, 3 people have contacted me to get my doctors information. Their mothers fit the criteria, have been tested & are awaiting their test results now.
Please share my blog so together we can possibly save many lives!!!!!
Cindy
XOXO
P.S. Please continue to pray for my sweet momma.
