Susan: BRCA2 positive and Alopecia. Finding a way to help others in the face of her own crisis

Susan: BRCA2 positive and Alopecia. Finding a way to help others in the face of her own crisis
The Beaubeau, courtesy 4women.com

Susan Beausang comes from three generations of breast cancer survivors. She also suffers from Alopecia Areata, or total hair loss. She has two degrees; one in Fashion Design and one Political Science after her career path deviated to the world of financial markets.

After coming to terms with her hair loss, Susan put her fashion design education to work and designed her own solution, a head scarf that unites the worlds of fashion and medical head wear. With strong personal connections to many women who have lost their hair to either Alopecia or cancer treatment, Susan knew she had to share her solution.  The BeaubeauR, "Beautiful Scarves for Beautiful Heads," was born and Susan founded her business, 4Women.com, both to make them available to women and girls worldwide and to advocate for a deeper understanding of the emotional impacts of medical hair loss in society at large and among the medical professionals that serve women and girls.

Today, Susan Beausang resides with her spouse and two labradoodles in Sarasota, FL.  With five grown sons spread out across the country, she dedicates herself full-time to women in need of emotional support, an advocate, or a fashionable head scarf.  Her website is www.4women.com

Written by Susan Beausang

Before there was Alopecia, there was breast cancer.

As a little girl, I knew that there was something unnatural about my grandmother's upper body.  It was never talked about in front of me or my siblings, but having had a super-radical mastectomy, her disfigurement was hard to hide.

Having undergone an aggressive breast cancer treatment that removed her breast tissue, lymph nodes, chest wall muscles and part of her rib cage, doctors were able to extend my grandmother's life. Then it was my maternal aunt, still in her 30's and diagnosed with breast cancer.  She underwent the same radical procedure, resulting in the same disfiguration.  Reconstruction was not an option in those days.   Ultimately, both my aunt and grandmother had recurrences and eventually died from the disease.

It didn't end there.  At the age of 62, my mother was diagnosed with breast cancer.  This was the 1980's.  Mom's breast cancer diagnosis was not openly discussed in front of us, but we knew.  She had a modified radical mastectomy without reconstruction.

Then came my younger sister Mary, diagnosed at the young age of 29.  Then Paula at age 45, then Mary again, this time in the other breast.  Needless to say, I was convinced that with me, it was simply a question of when, not if.  I was desperate to do something other than wait for that day.

I convinced my 7 siblings to enter a study at the University of Pennsylvania Hospital, one of the first to test for genetic mutations that predispose us to breast and ovarian cancer.  We learned that 5 of us (4 sisters and 1 brother) had the BRCA2 mutation, which translates into an estimated 85 percent chance of developing breast cancer over a lifetime.  Those were odds I just couldn't live with.

I opted to have both my breasts and ovaries prophylactically removed, as did my one sister who had not yet been diagnosed with breast cancer.  I wish that were the end to our cancer story, but it seems cheating, living and beating cancer is in our genes.

In between, there is Alopecia Areata.  Just 10 months after my prophylactic surgeries, my hair started falling out at a shocking pace.  In just 3 short months, I was bald, but not just bald.  My eyebrows were gone.  My eyelashes were gone.  All of my body hair was gone.  I cheated cancer, but you wouldn't know it by looking at me.  All my efforts to avoid cancer and the subsequent side effects (hair loss) were for naught.

Alopecia knocked me down for a while, and I'll forever be a passenger on the Alopecia roller coaster, but once I designed the beaubeau®, life as a woman with hair loss improved greatly.

I'd love to end my story there.  Instead, after breast cancer, BRCA2, prophylactic risk-reducing surgeries, and Alopecia, there was pancreatic cancer.  Again.  On my mother's side, we have BRCA2.  Then there's my father's side.  My father died from pancreatic cancer.  Recent research is questioning the role of BRCA2 mutations in other cancers.  So with a BRCA2 mutation from my mother's side and pancreatic cancer on my father's side, I decided it was worth my while to participate in another study.  This time it was at Moffitt Cancer Center in Tampa Bay, and the study was being conducted to determine the efficacy of the Endoscopic Ultrasound Scan (EUS) for detecting cancer and precancerous cells in the pancreas.  Lo and behold, my first EUS revealed that I had a pre-cancerous cyst (an Introaductal Papillary Mucinous Neoplasm in medical terms).

Once again, I was under the big cancer shadow.  My options were wait and monitor, or undergo a Whipple, a surgery to remove the head of my pancreas, my duodenum, the common bile duct and my gallbladder. I obtained 3 different medical opinions from THE experts (spanning Moffitt, John Hopkins, and the University of Pennsylvania) and got 3 varying opinions.  If living with the fear of a breast cancer diagnosis was intolerable, then there was just no way I was going to manage in the shadow of a silent killer like pancreatic cancer.

Fast forward to now, (I had my Whipple in November 2012 and surprised everyone with my fast recovery), and there is pancreatic cancer.  This time it's my younger sister, 2-time breast cancer survivor.  Since discovering my own pancreatic cyst, all of my siblings have decided to have a close look taken at their pancreases.  Two sisters have cysts of an as-yet unknown nature, and one sister has a Neuroendocrine Tumor, pancreatic cancer of the Steve Jobs variety.

Believe it or not, there is good news here.  As a result of my having entered the Moffitt study, found the pancreatic cyst, compelling my siblings to have their pancreases looked at, my sister's tumor has been found very, very early.  While she'll have to undergo treatment, her prognosis is very very good.

So whether you've come to 4Women.com raw with the emotions that come with Alopecia areata, female pattern hair loss, or unexplained hair loss, or you've come to 4Women.com with the fear and pain that comes with facing, fighting and beating cancer (and losing your hair to boot), I understand what you are going through.  If I can validate your feelings and help you to feel more self-confident, pretty, stylish, or joyful, then all that's come before in my life has value.

Susan M. Beausang

President and Founder of 4women.com

 

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