Thank you for inviting me here to share my experience with breast cancer prevention. Like many women, I have a long family history of breast and ovarian cancer; in fact, my Aunt’s battle with breast cancer in her 30s is documented in the movie, “Unstrung Heroes.” This touching story, told by my cousin, of his mother’s struggle to survive long enough to attend her son’s Bar Mitzvah, left a lasting impression on me. Then, about twelve years ago, my nana went through surgery and radiation to treat her breast cancer. Ever since, I have been very nervous about my chances of developing the disease, and not getting to experience the joy of watching my children grow.
I first heard about the genetic links for breast cancer and the BRCA gene mutation while I was working as a Medical Assistant in 2000. As I came to understand, the gene was discovered in 1990 by the King Laboratory at UC Berkeley. Ten years later, in 2000, there was still only one company, Myriad, conducting the BRCA genetic test, and, most people were unaware of the BRCA gene. In fact, BRCA remained relatively unknown until 2013, when Angelina Jolie’s courage and action grabbed peoples’ attention.
However, my fears preceded Laura Croft’s advocacy by almost a decade. In 2000, at the age of 20, the anxiety was killing me, and I simply HAD to find out the risks. Unfortunately, there were no convenient or accessible resources, support groups, or clinical trials. I was shuttled from doctor to doctor until someone finally sent me to a geneticist. I was 22 years old—confused, scared and in dire need of support – hoping to clear my mind, even though I was years away from surgical intervention.
I underwent testing for the BRCA genetic mutation, ordered by the breast surgeon, and, at 22 years old, I heard the scary truth that I tested positive for BRCA2. An RN at the hospital delivered the devastating news. It saddened and worried me enormously—I wanted children and I didn’t want anything to stand in the way. Therefore, I resolved to cast my fears aside until I finished child bearing. This genetic mutation might someday take away my breasts and other organs, and cause me great pain, but I vowed it wouldn’t take away my ability to bear children.
However, the pain and suffering had only just begun. The twin evils of a testing monopoly and an uncaring insurance company were unbearable for a young woman just starting her career and hearing a scary medical diagnosis.
Blue Cross Blue Shield put me through two levels of appeals to get my test covered. Meanwhile, Myriad was billing me $18,000 dollars. After BCBS denied my 2nd appeal, I demanded to speak with a geneticist to explain my case. I am of Ashkenazi Jewish descent with a very strong family history on both my paternal and maternal sides. Up until this point, my appeals had been reviewed first by non-MDs, and then by generalists. Why does an insurance company use non-specialists to deny specialty claims? Clearly, only a geneticist or oncologist was qualified to review my case.
Since then, I have gotten married, earned my BA, and am raising two sweet, adorable, and rambunctious children. After 12 years of watchful waiting by my breast surgeon and OBGYN, I realized that close observation wasn’t protecting me. I was becoming increasingly concerned and decided to be proactive about my health. In 2015, I underwent a prophylactic hysterectomy, followed by a bilateral mastectomy.
Prior to my mastectomy, I spoke with a breast surgeon and made the decision to start the reconstruction process immediately. My general surgeon also provided information regarding a clinical trial, and the plastic surgeon furnished the details and screening. Traditionally, she inserts tissue expanders immediately following the mastectomy. Tissue expanders stretch the skin to create a pocket of space for a long-term implant, with the surgeon injecting a little saline solution to the expander each week. Once the skin has been expanded to the desired breast size, the expanders are removed and replaced with permeant implants in a second surgery.
However, a company had recently completed a Phase 1 clinical trial using air expanders, and was now working on Phase 2. It’s an amazing process that I wanted for my body. I signed up for the clinical trial, yet I had a unique experience of having one standard saline expander and one new, needle-free air expander under trial because the air company only had one in stock .
Not only is the needle-free option lighter, less painful, and more comfortable, but also far more convenient, allowing you to expand anywhere. You just hold the 5” remote control to your breast until the lights come on. In contrast, going to the surgeon for saline injections twice a week for six weeks was a major inconvenience and painful.
As my diagnosis and reconstruction odyssey is almost complete, I cannot wait to get back to a normal life and feel comfortable in my own skin. I am extremely passionate about sharing my experience with others, and have started a support group for other BRCA+ women–BRCA STRONG.
SLIDE 21: Web shot from your site?
IMPORTANT: HOW TO PREPARE FOR A MASTECTOMY
- Make sure you have a low mattress to sleep on
- Get a mastectomy bra (maybe covered) If they do cover it, you only get 1.
- Do core strengthening (Not arms)
- Practice wiping
- Learn how to empty, clean drain and measure them.
- Have comfy pillows
In addition to providing practical advice to other at risk women, I am hoping to lead a movement to ease the financial burden of testing and prevention. I’ve spent over $12,000 dollars out of MY pocket. Thank you for listening to my story and I hope that Congress provides more funding for BRCA testing and encourages coverage of prevention and treatment as part of the coverage under the ACA.