Waiting on Round 2 of Genetic Testing Results

Mommy2Six

I was first tested for BRCA a year and a half ago after being dx with breast cancer at 29. My oncologist wanted a full 25-gene panel done but my insurance would only cover BRCA 1 and 2. Despite everyone being 99% sure I would get a positive result based on maternal AND paternal family history, my results were negative. Due to strong family history, my oncologists have continued to follow BRCA positive treatment protocols, and have recommended oophorectomy. A few months after my double mastectomy, I had a hysterectomy and salpingectomy as a compromise with my drs, because I was not yet ready to go through surgical menopause at 30. Since then, more family members have been dfiagnosed with and/or died from these cancers, and I almost regret the decision to delay oophorectomy.

I recently saw a new genetics team, who convince my insurance to allow them to run every hereditary cancer genetic test known to man, including rerunning the BRCA with the most current technology and info.

I was just notified by the lab that my results have been released to my geneticist and genetic counselor. I'm still waiting to hear from them, and hoping and praying they call with the results today.

I feel like I'm going to crack from the stress. In addition to all of this (breast cancer, double mastectomy at 29, false positive on CA-125, hysterectomy and salpingectomy 6 mos after mastectomy), I have lymphedema and other chronic complications from the surgeries, and while in the appt with the genetic counselor she randomly drops the bombshell that she also thinks I have Ehlers Danlos Syndrome. I know I have a lot to be grateful for, but I feel like I'm drowning.

I don't know why, but I just wanted to share this. My heart has been racing for the last hour, waiting for them to call.