November 2011: Mom’s mastectomy

Following Mom’s second breast cancer diagnosis in September 2011, she was tested for a BRCA mutation. She tested positive, explaining why she had been targeted by breast cancer twice in only twelve years.

Twelve years ago, in 1999, she was given the choice between a mastectomy and a lumpectomy. Twelve years ago, she didn’t know about the BRCA genes; not many people did, since the BRCA genes had only been discovered about five years earlier. Why have a mastectomy when the cancer tumor could be removed, and any remaining cells could be attacked with chemotherapy and radiation? A mastectomy meant losing her breast and dealing with even more surgery; a lumpectomy seemed like a much easier solution. So she had a lumpectomy.

Twelve years later, it was obvious that a mastectomy would be the smart choice for dealing with this second case of breast cancer. Her BRCA mutation meant that any breast tissue could turn lethal; having a lumpectomy might only be a temporary stop to breast cancer.

On November 9, 2011, we drove over to UCLA Medical Center at the crack of dawn for the mastectomy. Mom had showered and braided her hair the night before and was in all around good spirits. The three of us (Mom, Dad, and me) waited in a small pre-op room. Throughout the next hour, various people popped in to say good morning and explain any last minute surgery details: We saw her breast surgeon, Dr. Helena Chang; her (and later my) plastic surgeon, Dr. Jaco Festekjian; and many members of the anesthesiology team.

Here we are before Mom’s mastectomy…notice her braids! Smart choice.

Mom’s breast reconstruction, done by Dr. Festekjian, was a combination of a DIEP Flap procedure and a tissue expander insertion. Fat tissue from her stomach was used to create a left breast (the DIEP Flap procedure). This was necessary because her left breast, which had been radiated twelve years before, could not support an implant. Some women are able to use the DIEP Flap procedure to recreate both breasts, but Mom was too skinny for that! A tissue expander (like mine!) was inserted under the muscle of her right breast.

Dad and I sat in the hospital waiting room for hours during her surgery. A television screen monitored the progress of each patient, tracking if they were still in surgery or if they had been moved to a recovery room. After more than eight hours, Mom was moved from a recovery room to a hospital room. We were finally allowed to see her.

As expected, she was very drugged up and was also having problems with nausea. But she’s a trooper, and the next few days were easier. I tried to visit her each day after work or school, bringing her food or small gifts. One present was a 20 Questions electronic game. We had a lot of fun with that one, and her nurse was delighted because she had recently purchased the same toy for her grandson but had no idea how to use it! It’s a good thing I was there to teach her. =P

The 20 Questions toy!

After Mom’s mastectomy, her breast tissue was sent to a lab to be biopsied. Since she already had breast cancer, they studied the tumor to determine the next course of action. We were all delighted when Dr. Chang called to say that the tumor was very small and contained, meaning that chemotherapy would be optional! Yahoooooo!

Since it was Mom’s choice and she had already gone through the trauma of chemotherapy and radiation once before, she opted to forgo the optional extra treatments.

Mom, relaxing at home in bed in the days following the mastectomy. Note the Stuffed Usurper, a stuffed animal version of our dog Madeline, who was on vacation in San Diego with her auntie and uncle.

Over the next few months, Mom returned to Dr. Festekjian to have saline inserted into her tissue expander. She also started to see Dr. Amer Karam (my breast surgeon…isn’t he cute?!) about having a prophylactic oopherectomy. Dr. Karam is a gynecologic oncologist and breast surgeon–a true Renaissance man!

A BRCA mutation is not just about breast cancer; it also means an increased risk of ovarian cancer. Since Mom went through menopause already, removing her ovaries (an oopherectomy) was a practical decision.

The timing worked out that Mom’s oopherectomy could be at the same time as her implant exchange surgery, on February 27, 2012. Dr. Festekjian swapped out the tissue expander on her right side for a permanent silicone breast implant. He also took care of a few aesthetic issues associated with the DIEP scar. Dr. Karam performed the oopherectomy.

Since both surgeries were more minor than the mastectomy, Mom was able to come home later that afternoon…and I was able to go to Vegas with my girlfriends the following weekend without worrying about her, whoohoo!

Her recovery has been great since both surgeries. When she regained strength in her upper body, Mom joined the LA Pink Dragons, a dragon boat team of breast cancer survivors. She rows with them twice a week in Long Beach, and she loves it!

Physically, she looks HOT. The DIEP Flap procedure was in essence a tummy tuck, and her reconstructed breasts are slightly bigger than before, making her a large B cup/small C cup. If you’re going to get cancer, you might as well reap the benefits of fighting it off…get a rockin’ bod!

 

October 2011: It’s in the genes

A few days after finding out about my mom’s breast cancer diagnosis, I calmed down and stopped being so much of a basket case (meaning I returned to work, started doing my homework assignments again, and could listen to the song “Walk” without bawling.)

On September 30th my mom had sent an email to our “friends and family” mailing list, the people who routinely receive all of the news, good and bad (some of you might be reading this blog entry by way of that mailing list!). It detailed what was going on, what we knew about the cancer, what we didn’t know, and what the probable plan of action would be. This email was the first mention I’d ever seen of the BRCA genes.

On October 7th, Mom met with Erin O’Leary (scroll down that link to read Erin’s brief bio), a genetic counselor at UCLA Medical Center. Erin gave her more information about the BRCA genes and mutations and then did a blood test. The results of the blood test came back to us on October 13th, with a positive result for the BRCA2 genetic mutation.

The big bad scary place: 200 Medical Center Plaza at UCLA.

Mom wasted no time in telling me. Many parents who carry a BRCA mutation are very anxious and worried about telling their children; not my mom. She went straight from UCLA Medical Center (where she got the results) to my office in Santa Monica, took me out to lunch, and told me about the gene mutation. While she went to the restroom, I called Erin O’Leary and made an appointment to see her the next day.

That evening at home I started doing a lot of research on the topic. There were many questions: What were the BRCA genes? What were mutations of these genes? How many women had a mutation? Who was more likely to have a mutation? Could men have them? And most importantly, what were my risks? (The answers to these questions can be found here.)

My appointment with Erin the next day wasn’t necessarily about being tested for the BRCA genes; we just wanted to discuss what it meant for me that I had possibly inherited the same BRCA2 mutation as my mom. I, however, knew I would go forward with the blood test that afternoon.

Knowledge is power. Why wouldn’t I want to know? Growing up as a child of a relatively young breast cancer patient, I always knew that my chances of being diagnosed with breast cancer would be higher. Finding out that I was BRCA2 positive wouldn’t really change how I already felt.

Erin is great. Seriously. She has been such a helpful resource for me along this journey and was since the minute I met her. It was the three of us (Mom came with me) at the appointment. Erin gave me some background about the BRCA genes as well as some materials that had the specific numbers associated with BRCA mutations. We then talked about the typical options for women who are BRCA positive. The way I saw it, there were three options, but the first one was doing nothing–which isn’t actually a good option for anyone. So the only two viable ones were:

  1. Enroll in a program offered by UCLA Medical Center for high-risk women. Start yearly MRIs and mammograms at the age of 25. Start monthly breast self-exams. Start screening for ovarian cancer between ages 25-35. Consider chemoprevention, such as taking a drug called tamoxifen. (For more information about what the Revlon/UCLA Breast Center High Risk Program entails, download the brochure here.)
  2. Elect to have a prophylactic double mastectomy and reconstruction at any age. Elect to have the ovaries removed (oopherectomy) after I’m done having children.

The first choice, to me, seemed too passive. I’d already seen the numbers, and Erin had explained them to me even more; doing intense surveillance for breast cancer wouldn’t stop breast cancer from happening, it would just catch it early.

Before I got my head too involved in the different options, I figured it would be best to actually learn whether or not I had a BRCA gene mutation. Erin, who already knew that I hated needles, offered me two choices: the blood test or the saliva test. I told her I’d suck it up for the blood test.

I really am a baby when it comes to blood tests. And honestly, each time I get one, as soon as it happens I’m like “Oh…that wasn’t that bad…” And it wasn’t!

What was bad was the waiting. UGH! I hate waiting! My blood test was on a Friday afternoon, so it wasn’t sent to the lab until the following Monday. I hoped to hear from Erin by the following Friday, but the day went by without a phone call or email. The Monday after that I still had not heard. So on Tuesday morning (October 25th) I decided to call Erin myself.

I could tell immediately by the tone in her voice that I wasn’t going to be pleased with the results: I had inherited the BRCA2 mutation from my mom. Damn…you know…damn. Okay, I had prepared myself for these results because I already thought I would hear bad news…but still, there was always that little shred of hope that the gene mutation had skipped me.

My BRCA test results, from Myriad Genetics & Laboratories.

Well, at least now I knew for sure. And while the results were not desirable, the timing of their delivery couldn’t have been better: Erin mentioned to me that Lindsay Avner, the founder of an organization for high-risk young women called Bright Pink, would be speaking the following Saturday at a nearby hospital. She emailed the event information to me.

Lindsay Avner, founder of Bright Pink.

I was definitely going to go to the event. There was a lot for me to think about, and I hoped that seeing Lindsay Avner and hearing about her personal story would help me figure out my own.