PREvivor Definition – a survivor of a predisposition of cancer. The term specifically applies to the portion of the FORCE community (Facing Our Risk of Cancer Empowered) that has its own needs and concerns separate from the general population, and different from those already diagnosed with cancer. Previvor was coined in 2000 after a challenge from a community member who said she “needed a label.” In 2007, Time magazine declared the term #3 on their list of top 10 buzzwords of the year. Ten years after we created the term, Congress passed a resolution declaring September 29, 2010, Previvor Day, recognizing the unique challenges faced by women and men at high risk for cancer. (Source: http://www.facingourrisk.org/FORCE_community/previvors.php)
Here’s the skinny on the gene situation…
My name is Amy Jones. I’m 27 years old and I’m BRCA2 positive. Now please excuse me while I sit back down in my metal folding chair so I can continue to converse in a circle of random strangers as one of my genes has apparently fallen off the wagon.
Meet BRCA2. This, my friends, is a genetic gene mutation that causes an increased risk at an early age for breast cancer and ovarian cancer. The general population of women have a 12% risk of getting breast cancer and a 1.7% risk of getting ovarian cancer. With the BRCA2 gene mutation, that risk sky rockets someone like myself to a whopping 87% risk for breast cancer and a 44% risk for ovarian cancer. Super.
You may be wondering how someone at 27 years old would come across this kind of information. Enter my big sister. She was diagnosed early this year with breast cancer at 38. She is probably one of the healthiest humans walking this earth and is extremely proactive when it comes to protecting her skin from the sun, exercising and eating healthy, clean foods. She has two beautiful boys (7 and 2) and a wonderful husband, who are all on board the active/healthy wagon as well. Her cancer was extremely aggressive and since she was only 38, her doctor recommended to get tested for the BRCA1/BRCA2 genetic gene mutation. As they suspected, she came back positive for BRCA2.
My other sister and I (she is 30) were advised to get checked out as well since there was a 50/50 chance this gene mutation could have been passed down to us from our father. Luckily, my 30 year old sister came back negative. Not so lucky – I came back BRCA2 positive. The day was April 2nd and there were tornadoes all over the Dallas area. It was a really off day, to say the least.
Several options were presented to me regarding prevention. I had somewhat of an idea of what was about to come because of my eldest sister, but it was a bizarre feeling hearing them from a genetic counselor and knowing her words were directed at me. The first option was obvious: increased surveillance. They recommended I do a monthly self breast exam, a semiannual breast exam by my physician, a mammogram and MRI every 3-6 months and a transvaginal ultrasound every 6 months (<—MOST uncomfortable thing in life. Ever.) Option number 2: medical prevention. I was informed you can take Tamoxifen/Evista in a pill form which would reduce the risk of breast cancer by 50%. The down side? Forced menopause. Birth control pills were also on that list which would reduce the risk for by 50%. I’ll take a side of those! (And did.) But – as lovely as early menopause and extra doctor visits sound, those two options were quickly nixed. The knowledge of this mutation looming over my head would turn me into a massive hypochondriac, causing me to over think and over question every little thing on my breasts every minute of every day. Given the fact that I don’t plan on being single for the rest of my life (knock on wood), the want for children to be a part of my family nixed the “menopause pill.”
The third and final (and only in my opinion) option was a doozie. A prophylactic bilateral nipple/skin sparing mastectomy with tissue expanders, alloderm, reconstruction and implants. Say that three times fast. The process is actually pretty simple…
During the first surgery, the breast surgeon will make an incision underneath the fold of my breasts and will proceed to remove every bit of my breast tissue, leaving all of the skin on the top of my breasts as-is (SO HAPPY ABOUT THAT!) Then the plastic surgeon will go in and put in tissue expanders underneath my muscle. They are similar to implants but they have a port built-in so the doctor can fill them with saline every few weeks to form a nice pocket for the final implants. They will have some saline already in them during the first surgery so I won’t be completely flat when I leave. The tissue expanders aren’t quite as soft as implants but unless someone is groping me all the time, no one will really know. The plastic surgeon will also use something called alloderm. Alloderm is basically donated epidermis that is placed directly underneath my breast skin. It creates a thicker “wall” to make a more natural look. It also acts as a type of support sling for the final implants. If I didn’t go that route, we’d have a Pam Anderson look goin’ on and that sure as hell ain’t happening! The plastic surgeon will then attach a drain to each of my breasts to minimize scare tissue and those will be in for about 10 days. Gross. I’ll be in the hospital for a couple of days after the initial surgery to recover. Apparently they serve morphine there. That ought to be interesting. 🙂
I’ll be visiting the plastic surgeon every few weeks for three months as a follow-up and to get my expanders filled until I get to the right size. They fill the expanders with saline using a needle and a magnetic port that’s built into the expander. They basically have a little tool that detects where the port is over the top of the skin so they know where to enter the needle. Wierd. At the three month mark, I’ll go back in for an outpatient surgery and get the final implants put in. After those heal, they may do some fat grafting by going through my belly button or butt to add a tiny bit of fat to my breasts for a more natural look and feel. And that’s basically the final stage!
All in all…I’m as ready as I can be! I will post everything that happens. Some may not be what you want to see, but for anyone else that is going through this same thing, my hope is that it will put your mind at ease.