Making the Most of our Genes to Stay Cancer-free

cancerSusan M. Beausang, has Alopecia Areata and is a Breast and Pancreatic Cancer Previvor. She shares her journey in taking actions to prevent Breast and Pancreatic cancers in the following post.

Susan  is President of 4Women.com, Inc. and designer of the patented beaubeau® head scarf, a fashionable scarf specifically designed for women and girls, which unites the worlds of fashion and medical hair loss.

4Women.com’s mission is to help women and girls cope with the emotional upheaval of medical hair loss with dignity and confidence and to advocate for greater understanding of the emotional impacts of hair loss.

As Susan puts it, “I am bald but cancer-free. I strive to be a source of strength and hope for women and girls with medical hair loss.”

Here is her story.

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 my younger sister Mary was diagnosed at the young age of 29. Then my sister Paula was diagnosed at 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 prophylactic surgeries to remove both my breasts and ovaries, 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.

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.  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 at Moffitt Cancer Center in Tampa Bay.

The study was being conducted to determine the efficacy of the Endoscopic Ultrasound Scan (EUS) for detecting cancer and precancerous cells in the pancreas. Low 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 three different medical opinions from THE experts (spanning Moffitt, John Hopkins, and the University of Pennsylvania) and got three varying opinions. If living with the fear of a breast cancer diagnosis was intolerable, then there was just no way I would be able 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. Since discovering my own pancreatic cyst, all of my siblings 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 that found the pancreatic cyst and encouraging  my siblings to have their pancreases looked at, my sister’s tumor was found very, very early.  While she’ll have to undergo treatment, her prognosis is very, very good.

So whether you come to 4Women.com raw with the emotions that come with Alopecia Areata, female pattern hair loss, or unexplained hair loss, or you 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

Visit Susan at: www.4Women.com

 

 

 

 

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4 Comments

  1. Catherine says:

    Wow – what a journey you’ve been on. It’s such a relief that we can now openly and without shame discuss these issues. This is a positive change, and even better is the support in which it results.

    Catherine
    http://www.facingcancer.ca

  2. Nancy's Point says:

    Thanks for sharing your incredible story Susan. Thank you as well, for all the work you do to help others cope with hair loss. Your compassion first and foremost always shines through.

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