Dear friends, family, and community:

This past July, at 23 years old, I was diagnosed with a pathogenic gene mutation in the BRCA1 gene. This means that the BRCA1 gene in my body is not functioning properly, and therefore can not do its job in protecting me from developing certain cancers. My aunt, grandmother, and 2nd cousin have all had this gene mutation and passed away from late state, aggressive breast cancer at 33, 54, and 29, respectively. Due to gene mutation and my family history, my doctors have told me that my lifetime risk of breast cancer is around 85% and my ovarian cancer risk is around 30-50%. It also causes an elevated risk of melanoma and pancreatic cancer.

As I’m sure you can imagine, this news has been incredibly difficult and life altering at such a young age. I have begun to meet with doctors to discuss my options for moving forward. Methods of managing this high risk include routine MRIs, mammograms, ultrasounds, blood tests, and preventative surgeries. One can choose to undergo a preventative double mastectomy (removal of all breast tissue and/or preventative oophorectomy (removal of the ovaries) in order to reduce risk.

This past September, I had some concerns about my breast health. After being evaluated by a doctor, I was sent in for an ultrasound, then an MRI. One day before my 24th birthday, my surgical oncologist called me to let me know that there were findings suspicious for breast cancer in my MRI result. The sheer terror I experienced in this moment and the weeks that followed is indescribable. My doctor sent a STAT order for an ultrasound, a mammogram, an MRI, and a biopsy. Although I was able to get in pretty quickly for the ultrasound, I had to wait over four weeks for my mammogram, MRI and biopsy appointment. During those four weeks, the stress of the situation took an immense toll on me. I constantly wondered what I would do if I had cancer, and how in the world I would handle it. During that time, I struggled to focus at work and struggled even more to take care of myself. As a fiercely independent, high achieving person who has fully supported myself for the past few years since reaching adulthood, the fact that I struggled is embarrassing and vulnerable for me to admit.

In the week between having my biopsy done and receiving the results, I vowed to take whatever action was necessary to prevent feeling this scared and powerless ever again. For me, this meant resolving to schedule a preventative mastectomy. I met with surgeons, and decided on one who I feel comfortable with and is well known for doing these types of procedures. I decided to schedule my surgery for the summer, past the one year mark at the company I was working for. I would have been eligible for my job to be protected by FMLA, ensuring that I would have a source of income to return to post surgery.

After a week, I received my biopsy results, which came back complex but normal overall. To say that I was relieved is the understatement of the century. But unfortunately, just a few weeks after notifying my workplace that I would need to leave for surgery, I was laid off due to a company reduction of force. Though management assured me that the layoff was not due to my performance, it was extremely disheartening to learn that I had lost my source of income right before an especially expensive and financially stressful time.

In the weeks that followed, I managed a whirlwind of emotions and a whirlwind of essential tasks. Stress, grief, guilt, failure, frustration, anger, fatigue, anxiety, depression. Filing for unemployment, applying to jobs, writing cover letters, interviewing, sending emails negotiating rent down after my landlord sent a notice that it will be raised, endless endless endless medical bills, pre-surgery appointments, coordinating help and care for recovery, booking travel and lodging for surgery, applying to grants to help cover some of the expenses. Trying to find moments of peace and relaxation in it all and trying not to go insane. I never thought I would be able to handle so much at 24, but I have found that I have no other option.

As someone who has fully financially supported myself for the past few years, it is so hard asking for help. My insurance has high co-pays and does not assist with travel or lodging expenses for surgery. A portion of my surgery to preserve sensation in my chest through nerve sparing and grafting is considered out of network by my insurance, so I will have to pay this fully ($6,500) out of pocket. I will have minimal support during my recovery, so I will likely end up needing to spend a lot of money on take out and delivery for meals (I will have movement restrictions and lifting restrictions for at least a couple of weeks after surgery).

Thank you for reading my story and please share if you feel moved to do so!

Warmly,

Laura