Woman In Bloom

A Journey Navigating BRCA2 Mutation + DIEP Flap Reconstruction

By: Amanda Lukowski

 

 

 

My BRCA journey began

with the death of my aunt, Linda.She was diagnosed with breast cancer at the age of 30; between 30 and 58 she had breast cancer three times. The last time, the cancer metastasized to her pancreas and all over her body. My mother cared for her and she spent her last days in the hospital surrounded by family. It was very quick from her last diagnosis to her passing.

My mom was shaken and concerned that she may also carry the BRCA gene, so she told her doctor. He ran the genetic test and it came back positive for BRCA2. After learning of her own elevated risk of breast cancer she opted to do a skin sparing double mastectomy with DIEP flap reconstruction. At 53 she had an easy time with the surgery no complications and recovered well.

 

BRCA mutations are genetic, and once my mom tested positive, I knew I had a 50/50 chance of being positive as well.

Being the researcher I am, I dove into finding out all I could on the BRCA2 mutation and what it could mean for me. I educated myself on all the options and courses of treatment. I was scared. I was 31 with a baby and a toddler—I was a year older then my aunt when she was first diagnosed. I also just had this gut feeling that I was also BRCA2 positive. I went to my OBGYN and asked to be tested. He agreed and also was the first person he sent to be tested from his private practice. There was some confusion and the wrong tests were ordered, then the lab needed verification of my mother’s gene testing. This dragged on and it was a month and a half from my blood draw until I received my results.

I remember the day I got the call. It was Dec 27th 2012. I knew the only reason my Dr. would be calling me over Christmas break was with bad news. He told me I was positive and he made an appointment for me to talk to a genetic counselor the first week of the New Year. Normally I'm not a super emotional girl, I usually am the strong one, but it had been a hard few months. My aunt passed, my parents separated, I had a baby, my mom had a mastectomy and I was breastfeeding. I was in a fragile place of physical and emotional exhaustion. I hung up the phone with him and burst into tears. It was like this was just the icing on the cake and it pushed me into emotional overload.

The next few days were a blur. I was feeling overwhelmed but trying to maintain normalcy for my family. I went to the genetic counselor and she told me my three options which at the time were: surveillance, which meant a breast MRI every six months, a chemoprevention drug called Tamoxifen or a preventive double mastectomy.

She also told me I had an 86% lifetime risk of developing breast cancer.

My husband was extremely supportive of whatever my decision was. I knew I wanted to do the surgery, and he wanted me to also. I just couldn't imagine having to look my girls in the eyes and tell them I had breast cancer and I could have taken steps to prevent it. The only thing holding me back was we always had planned on having three kids and I was a huge proponent of breastfeeding. The thought of not breastfeeding was causing me so much internal turmoil! I didn't know all the options and resources there were at the time to help with this struggle.

I needed to talk to other women my own age to process what I was going through so I found a support group. I went to my first FORCE meeting and met other young women who were also positive for hereditary breast and ovarian cancer. As I listened to their stories I was deeply affected and moved. I shared my story and where I was in my process. The two women after me, both very close to me in age, shared how they were also BRCA2 positive and both had gotten cancer while they were pregnant. They both talked with me after and when I left I decide that I needed to do the surgery sooner than later. I came home and told my husband and he was fully supportive. We agreed I would breastfeed my daughter until she was a year old, then have the surgery as soon as the doctor said I could.

We knew it would be hard with two young children, but thought it would be about three months max of down time, since I was young and healthy. I was wrong……

I met with my breast surgeon and she ordered the breast MRI. Thankfully it came back clear. She was very supportive of my decision and advised me of how long to wait after breastfeeding.

I was not sure what route for reconstruction I wanted to go, but wanted to have the option of a DIEP flap reconstruction. The DIEP flap procedure is a very intensive and technical procedure and there are not many plastic surgeons that are trained to do it in the country. I was so very lucky to have one of the best and most up to date surgeons in the country in my area. I met with him and he said I was a good candidate for either implants or the DIEP flap. Both Dr’s were encouraging and said recovery should be easy for a “healthy” 31 year old.

Once I made my decision I was fully committed to it. Time passed, I nested like crazy, wanting to have as much ready for the surgeries as possible. I reorganized my house, batch cooked and froze lots of food and I made schedules of my kid’s routines and printed them out for family and friends. My older daughter had just turned three and was also starting preschool two weeks before my surgery, so I prepared the school in advance and let them know the situation so that they could help make the transition easier for her. I thought I had it all under control for the recovery.

The week before my surgery I had a wonderful girl’s night at the beach with some beautiful ladies. It was lovely. We had wine, chocolate, fruit and candles as we all laughed into the night. It was so fitting there was a family at the beach setting off Chinese lanterns. One of my friends, unbenounced to me, had gone over told them my story and got a pink one for us. We all stood on the shore and let it go over the Pacific. As it rose I was overcome with emotions, my sweet friends hugged me, prayed for me and spoke words of truth into my ears. It was a gorgeous evening.

The night before my surgery my husband and I laughed and cried. We knew I was making the right choice but it was also heavy stuff. Let me tell you—voluntarily losing all feeling in your breasts for the rest of your life is a big deal when your 31. But we were both overwhelming grateful that I had the opportunity to avoid getting breast cancer in the first place...

 

To read the rest of Amanda’s incredible story about DIEP Flap Reconstruction, please visit her site at www.balancingbrca.com.

 

Amanda Lukowski

Amanda is the blogger and kitchen creative behind Balancing BRCA. On her blog you will find autoimmune paleo recipes and insights about her journey with BRCA2, autoimmune difficulties, and how her love and passion for food and cooking are helping her create a healthier lifestyle in light of these issues. 

www.balancingbrca.com

@balancingbrca