Libby's Bilateral Mastectomy Experience

I was 55 years old when I learned that I carry a BRCA2 gene mutation. Being over 40, I was advised to have my tubes and ovaries removed as soon as possible. I made arrangements with Dr. Peter Schwartz to perform the outpatient oophorectomy. In addition, I began heightened surveillance of my breasts with Dr. Baiba Grube (both of Yale Cancer Center). On my first breast MRI, and subsequent needle-core biopsy, a stage1 invasive ductal carcinoma was found on my chest wall that was not palpable or visible on a mammogram. I received the cancer diagnosis one week before my scheduled procedure with Dr. Schwartz.

My gynecological surgery was followed one month later with a bilateral mastectomy with Dr. Grube. My plastic surgeon was Dr. Stephano Fusi of Guilford. I was told that an early stage cancer like mine would normally be treated with a lumpectomy and radiation. However, because of my BRCA2 status, I was at increased risk to develop a second breast cancer. I decided immediately to have both breasts removed and reconstructed. I wanted to have a matching set, and I didn't want to be constantly worried about the remaining breast.

I chose to have nipple sparing surgery. This greatly lengthened my initial surgery (~12 hours), but meant that I didn't have to have nipple reconstruction and areola tattooing later on. After my sentinel lymph nodes were tested and found clear of cancer, my breast tissue was removed and Dr. Fusi placed expanders under the biceps muscles that cover the chest to begin the process of stretching them out. In the absence of breast tissue, the implants were placed under the chest muscles to give a better shape to the reconstructed breast mounds. He also used alloderm tissue to provide more support for the implants. Saline solution was injected into the expanders during the surgery so that I always had some shape to the chest. About six weeks after surgery Dr. Fusi began increasing the amount of saline in each expander by about 50cc/breast every two weeks. Two "fill-ups" later we both felt that the right size and shape had been achieved. The next step was an “exchange surgery” where the expanders were removed and permanent implants were placed. I had to decide between saline and silicone gel for the implants. After some deliberation, I chose to go with the new gel silicone given the more natural feel and the reported better comfort level.

My entire experience, from learning about my BRCA2 diagnosis to recovery, took about eight or nine months. My “after cancer” journey will take a lifetime. I should mention that because my breast cancer was detected early, I was very lucky and I didn't have to have chemotherapy or radiation.

Preparation for my surgeries, particularly the bilateral mastectomy, involved many things……

* I read "Prepare for Surgery, Heal Faster" and listened to the CD with guided meditation by Peggy Huddleston. This empowered me to take back control over my situation and go from feeling terrified to calm going into surgery.

* I built a webpage on www.CaringBridge.org to keep my community of family and friends informed about my progress. It gave them the opportunity to leave loving and supportive messages.

* I found the breast cancer support groups in my area and went to the meetings. I started with two, and now only go to one.

* I bought a full spectrum HappyLight 4500 from Verilux (http://www.verilux.com/) to sit in front of during my recovery to help fight depression.

* Another good book I read is Jessica Queller's "Pretty is What Changes," about her own experiences with BRCA and prophylactic bilateral mastectomy.

* The Necessity Bag that Dr. Grube's PA gave me at my pre-op appointment was a fun and useful surprise. A list of participating doctors can be found at www.necessitiesbag.org.

* I worked with a good physical therapist who has experience with mastectomy patients. I began about six weeks after surgery, in order to lay down functional scar tissue.

* Jin Shin Jitsu and Reiki massage were very helpful before and after surgery.

* I wore loose comfortable clothes with shirts that button down the front for easy on and off.

* I arranged to have a visiting nurse, from the VNA, to help with my drains when I first came home from the hospital (I had four drains, two on each side, for a total of four weeks). I found that using big safety pins to hold my drains together allowed me to flip them over my head and out of the way.

* I tried to eat more protein for healing, celebrate the little victories and appreciate my progress. I did things I enjoy, rested and laughed a lot!!!

Here are several websites that were useful:

www.cancer.org

www.facingourrisk.org

www.armyofwomen.org

www.lotsahelpinghands.com

www.cleaningforareason.org

Everybody's cancer experience is different. However, there's lots of help and hope available. Don't be afraid to ask questions, and don't be rushed into any decisions that don't feel right for you.

I hope this helps. Good luck.

To your health

~Libby