Mastectomy Nerves

The completely overwhelming feeling of knowing your surgery date is approaching is hard to explain to others who’ve never experienced such anguish.  My BRCA sisters can probably relate to the fact that it’s a very different type of anxiety.  For some it’s elective surgery, preventative measures against the possibility of developing breast cancer.  For others like myself, it’s the next necessary step in the fight against cancer, to ensure it hopefully never returns.  Either way, the thought process one has to go through to prepare for the fact that they will lose both their breasts, is extremely scary, and even with newer nipple sparing procedures, your breasts will not be the same as they were.

When I found out I too carry the BRCA1 mutation like my Mom, at 25 years old, I was in no place to mentally handle such a challenge as a prophylactic mastectomy.  I was single, in my dating prime, and building my marketing career.  Perhaps if I wanted a physical change to adjust how I looked, it may have been an easier decision to make, but I was happy with my physique.  My Mom and I both thought at the time, that diligent surveillance was the right approach.  She was 39 when first diagnosed with stage 2 ductal carcinoma.  At 25, the looming fear of possibly getting breast cancer, even knowing I had the BRCA1 mutation, wasn’t eminent.  My thinking was, god forbid if they find something, it will be early enough to treat easily and at that point, I would get a mastectomy.  In 2005, it was not nearly as common as it is now for young women in their early 20’s to get preventative mastectomies.  I even enrolled in a research study through the NIH and none of the Oncologists in that study discussed prophylactic measures with me.

So how does one handle anxiety as their mastectomy date approaches?  Some of my helpful tips below and please feel free to share your own:

  1. Make sure you have a great support system in place and don’t be shy to share your fears and needs with them – family, close friends, great doctors, etc.
  2. Ask, ask, ask…  The more questions you ask your surgeons the better.  Knowledge can be comforting.  Most breast surgeons have many years of practice with patients in all types of medical situations and can help ease your fears.
  3. Research products that can help make your recovery a little easier such as specialty support tanks designed to hold drainage bulbs out of sight, specialty pillows designed to help support the areas of your upper body for more comfort, etc.
  4. Don’t be fearful to take meds and painkillers.  Valium helped me a great deal! I found sleep to be my best friend during recovery.  The less you move around, particularly within the first few weeks of recovery, the better.
  5. The morning after surgery can be the most difficult.  It’s hard to get a good night’s sleep in a hospital, let alone after major surgery.  I was nauseous from being under anesthesia for many hours as well.  It will be greatly beneficial to make sure you have a close relative or friend there for you when you wake.
  6. Scar reducing/healing products are very helpful.  I used ScarAway silicone strips.  They’re reusable and easy to take on and off.  Some scars are more concealed then others depending on where incisions have to be made.  Mine are quite visible on the sides of each breast, so I wanted a product to reduce inflammation and aid in healing as quickly as possible.

I urge others to comment and share what helped them during mastectomy surgery and aided healing afterwards.

xo fellow BRCA-nites

Learning BRCA

It wasn’t until Mom had a recurrence in 2001 when she read about BRCA mutations. Her recurrence was in the opposite breast, completely unrelated to her first breast cancer diagnosis in the early 1990’s, when she had a lumpectomy followed by chemotherapy and radiation treatment. Linked to Ashkenazi Jewish ancestry, she found reasoning within her BRCA research to get tested for the mutation. The information was still new, but luckily having a PHD in Library Science, she was able to obtain the information needed that lead her towards the decision of testing for it. She was in her early 50’s at the time and did in fact test positive for BRCA1 mutation.

She informed me about being BRCA when I was 25. She knew the chance of passing the mutation down to my sister (who was only 17 at the time and tested at 19), or I, was 50/50, and if I did in fact carry the mutation, thought 25 would be a good age to start getting baseline screenings (mammographies, sonograms and MRI’s).

We met with a genetic counselor who briefly explained what it meant to carry the BRCA mutation, but sadly, having a Mom who had breast cancer twice, both times needing chemotherapy, and a double mastectomy and oophorectomy after her 2nd diagnosis, I knew exactly what having this mutation meant. I didn’t have to read any statistics (which indicate by the way, chance of breast cancer over one’s lifetime with BRCA1 mutation is 80%).

I waited an anguishing few weeks for my results to come in and the news was unfortunately my worst fear come true, positive for BRCA1 mutation. My Mom was sitting next to me at the appointment and I completely broke down, sobbing on her shoulder. It was 2005 and again, I was only 25 years old (my sister tested positive at 19 years old). The question we had for the genetic counselor, what comes next? What should we do?

Hindsight my BRCA sisters is 20/20….

Hello BRCA Sisters!

Simply search #brca on Instagram and you will find over 37,000 images connected to beautiful, brave, strong women in various stages of their BRCA+ journey.  It is significantly more common now to find women, as young as age 23, brave their BRCA world head-on with preventative mastectomies and oophorectomies.

My story is just 1 out of thousands of women who have also been diagnosed with BRCA mutations.  My story starts at the pre-adolescent age of 10 when my mother was first diagnosed with breast cancer in 1990, when little was known on how to effectively treat triple negative breast cancers.  The now common A/C and Taxol chemotherapy regiments were relatively brand new and exploratory back then.  The medical community knew nothing of BRCA genetic mutations and its connection to breast and ovarian cancers.

Perhaps others can find comfort, solace, and further understanding of what it means to identify as BRCA through my story.  I share with all my sister BRCA fighters and encourage you to engage, learn, ask, and seek support.  We are all in this together.

I start my blog with a Facebook post I made the night I received my remission news about a week after my mastectomy surgery.  I, like my mom, am a breast cancer survivor. Mastectomy is just one small piece of my BRCA story, but quite an important piece to share.

February 3rd, 2017

Facebook Family & Friends – In light of all the heavy political news, I’d like to take a moment to announce some very positive news!

At the end of January, my family & I embarked upon the second phase of my breast cancer journey; one that we hoped would be the very last, necessary step to conquer and prevent the disease from ever recurring again. I am ecstatic to report, that I’m now 100% in remission!!

While this last phase physically changed me, it will never define who I am as a woman.  I will always be a mother, daughter, wife, sister, aunt, niece. I bare scars of a survivor and damn proud of it!

Thank you again to my wonderful circle of support.  I am very lucky and extremely thankful!!

“Remember that bravery is not a lack of fear, but the ability to move forward in spite of fear”…

Much more to come my BRCA sisters…  stay tuned!

Good company in a journey makes the way seem shorter. — Izaak Walton