Tuesday, April 23, 2013

Previving

I can't say that I was surprised that my results came back positive.  My sister had already received  hers and they were positive.  My chances of recieving the gene were 50/50, but I knew in my heart what I've always known; I would one day have to face hard decisions because of an inherited high risk of cancer.

Ironically, I felt relief when I received my results.  Being positive meant I could be proactive about my health.  I am a fix it and forget about it kind of person.  There was never a real doubt in my mind what I would do with the information that the test results provided.

I have 4 kids, each  who have busy schedules and need me to be present.  While a cancer diagnosis doesn't necessarily mean certain death, it does certainly complicated the logistics of family life to put it mildly.  I want to avoid putting my babies through the crisis.

I have elected to have a preventive bilateral mastectomy as well as a complete hysterectomy.  Although once thought of as a radical intervention, this is now becoming quite the norm in Brca positive women.  Once these surgeries are performed, my reproductive cancer risk will drop dramatically, and quite possibly save my life.

As with any choice, I have had to weigh the potentially severe consequences to choosing prophylactic surgery.  At 36 years old, I will be thrown into immediate menopause when my hysterectomy is completed.  I will learn to juggle new found menopausal side effects while finding the correct dose of hormone replacements which I will be on for years. Early menopause is also linked to an increase depletion of bone strength.   I will have close to 95% of my breast tissue removed in a three hour surgery.  I will awaken from surgery with several drains attached to body to help remove excess fluid.    The breasts that I was born with and fed my children from will cease to exist.  Over time, I will have reconstruction, and although I will once again have "breasts," they won't be "my breasts."  They will be synthetic and  man-made in a lab.  I will not only have to learn to adjust to the new look of my body, but also a new feel of  unfamiliar body parts.  I will do all of this while recovering from two major surgeries.  To date, I have never had surgery.

As daunting as my choice sometimes seems, I feel confident that it is the best thing for my kids and I.  I have been given a gift of knowledge from my relatives who have gone through cancer .  Because of their struggle, I have learned I am at risk, and because of my risk,  I can save myself.  I can previve.


http://www.facingourrisk.org/

Monday, April 22, 2013

Brca2... Knowledge is power.

I'm about to embark on a crazy life changing journey of sorts, and in an attempt to keep all things "positive" and proactive, I'm going to chronicle the ups and downs.   So here it is.  The good the bad and the slightly too personal for a public blog.

I grew up knowing there was a lot of breast cancer in my family.  My grandmother's mom died of the disease when she was just a little girl.  After her mother and several aunts had breast cancer, my grandmother also was diagnosed.  Thankfully, she survived the disease, but my mom was always vigilant about her own breast health and reinforced to my sister and I the importance of screenings.

Several years ago, my mother's oldest, little sister, Adele, was diagnosed with ovarian cancer.  For many years, she struggled through countless treatments and surgeries.  She succumbed to the disease this past summer.  When Adele was sick, Isabelle, the younger of my mother's sisters took a genetic test to screen for the so called "breast cancer" gene.  She tested positive for a dangerous mutation in a tumor suppressor gene. (Brca2- pronounced brack-a two) The variant found in her gene gave her an 87% risk of breast cancer and raised her risk of ovarian cancer to almost 50%. (Way over what the general population faces). Isabelle decided that she would have a hysterectomy when she retired, based on the result of her test.  Unfortunately, before that could happen, she was diagnosed with ovarian cancer.  She is now the second sister in the family to suffer from this horrible disease.  My mother, had a hysterectomy several years ago for  unrelated health reasons.  She will be the only one of of the 3 sisters not to struggle with this very deadly cancer.

Given the high rate of breast and now ovarian cancers in our family blood line, and the knowledge that the dangerous mutation is present in our family, my sister and I decided to each be tested for the gene.  We both tested Brca2 positive.  We both are at a highly elevated risk of developing breast and ovarian cancers.  Knowledge is power.