Owning my Story

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There has been a lot of buzz about Angelina Jolie's announcement regarding her preventative double mastectomy today. I am impressed by the way she has chosen to frame her story as a way to empower women to know their risks and make their own decisions. As many of you know, I made a similar decision in 2010.

Here is my story...

I used to think that young, healthy women who chose to remove their breasts to decrease the risk of breast cancer were crazy. Then I became one of them.

Let me explain.

I am 39 years old. I am a wife and mother of two boys under the age of five; full-time executive, part-time blogger. I exercise regularly, keep an eye on my diet and have completed a total of ten full and half-marathons. I also have a significant family history of breast cancer - which means that I have seen a breast specialist every six months and had an annual mammogram, sonogram and MRI for the past ten years.  I’ve had four breast cancer scares over the course of six years. And in the past 22 months, I have had both of my breasts and ovaries removed.

And I’ve never been happier.

Now, don’t get me wrong. Preventative surgery is not for everyone. Even with a history and genetic makeup like mine, surgery is not an obvious or easy choice. But for me and my family, it was the right choice.

Ten years ago when I began the process of special screening for breast cancer, I looked at it from a very practical perspective - my genes are out to kill me, so I will do everything in my power to stop them. While the screening was nerve-wracking, I never gave it much thought. I kept my appointments like clockwork and always assumed that the results would be negative.

That all changed on February 6, 2007 when my first son was born. Suddenly, there was a tiny human being who depended upon me for everything. I couldn't get sick, take a vacation, work late…or die. Fast forward to January 9, 2009 with the birth of my second son, and suddenly I had twice the number of reasons not to die. Becoming a parent forced me to confront my family history in ways that I never had before.

After testing positive for the deleterious mutation of the BRCA2 gene (more commonly known as the “breast cancer gene”) in April of 2010, I learned that in addition to my risk for breast cancer I was also at an elevated risk for ovarian cancer. Women with BRCA mutations have a 36-85% chance of developing breast cancer in their lifetime (the general population has a risk of roughly 12%) and a 16-60% chance of developing ovarian cancer by age 70 (the general population has a risk of less than 2%). *

According to my breast specialist, Dr. Stephanie Bernik (Chief of Surgical Oncology at Lenox Hill Hospital in New York), screening is an alternative to surgery for women with BRCA mutations. The problem is, “some studies suggest that even with intense screening, you are not guaranteed to catch breast cancer at an early stage.” Dr. Bernik emphasizes that the survival rates are great when breast cancer is caught early. But the higher goal isn’t survival, it’s avoiding cancer and treatment in the first place – especially for women like me.  

Breast cancer screenings are not foolproof, but ovarian cancer is much more insidious still, with annoyingly general symptoms like abdominal bloating and irregularity. According to my “ovary doctor”, Dr. Stephanie V. Blank (Gynecologic Oncologist, Women’s Cancer Program at NYU Langone Medical Center), the recommended course of action for BRCA positive women varies from person-to-person. Surgery is the best preventative option available today. However, Dr. Blank emphasizes that it is not the right option if a woman isn’t sure that she’s done having children or simply is not comfortable with the idea. “It often takes some time for a woman to get used to the idea of taking her supposedly normal ovaries out to prevent a disease, so (for some women) the decision can take months or years.” If a woman is not ready for surgery, as was my case when we first met, Dr. Blank discusses “the limitations of screening for ovarian cancer – false positives, false negatives and the stress that screening can cause without definite benefit.”

The turning point came for me in October of 2010, when there was another suspicious finding on my regularly scheduled breast MRI. Within a matter of days, I had an MRI-guided biopsy and spent yet another sleepless week waiting for the results. When I went to see Dr. Bernik for my follow-up, she happily informed me that the growth was benign. I was actually shocked to hear myself tell her that I’d had enough. While preventative surgery always seemed extreme to me, the thought of looking over my shoulder every six months for the rest of my life was simply too much. That day, I spent nearly an hour discussing every detail of the surgery with Dr. Bernik and almost two hours discussing my reconstruction options with Dr. Oren Lerman (Plastic and Microvascular Surgeon at Lenox Hill Hospital).

On December 15, 2010 I had a prophylactic radical bi-lateral mastectomy with diep flap reconstruction (or, to you and me, a microsurgery using my own tissue to reconstruct my breasts). While it was a harder decision to remove my ovaries, my husband Angel and I had decided shortly after the birth of our second son (over a year before I learned of my BRCA status) that our family was complete. On September 22, 2011, I had a prophylactic bi-lateral laparoscopic salpingo oophorectomy  (I know – it totally sounds like something out of Dr. Seuss, but it basically means a minimally invasive surgery to remove both ovaries and fallopian tubes).

It’s been almost 2 years since I had my mastectomy and just over a year since my oophorectomy. While this has been the most challenging 2 years of my life, I can honestly say that taking these aggressive steps to prevent cancer from cutting my life short was one of the best decisions I have ever made. I could have continued looking over my shoulder every six months, hoping and praying that the tests would remain negative. Instead, I chose to tell cancer to f*&k off. You want my breasts? Take ‘em! Now I have a better pair. You want my ovaries? I was done with those anyway.

I chose my kids. I chose my husband. And I chose me.

*Source: National Cancer Institute, National Institutes of Health
Anonymous said...

Thank you for sharing. My family has a significate history of Breast cancer on my fathers side ( several Aunts and female cousins). My father actually was recently tested since so many of his other 9 brothers and sisters had either breast cancer or some other related cancer. He did test positive for the BRAC2 gene but it occurred right after my husband was put in the hospital for what we thought was another short term stay. My husband was a 56 year old type 1 diabetic who had had a kidney transplant, partial amputation of both feet and more surgeries and hospitalizations than you could shake a stick at. Unfortunately this was to be his last hospitalization and after three months in the ICU/skilled nursing/then back to the ICU. Dealing with ALL of this, my two kids (one just graduating from high school, one just going into high school), the house, the mortgage and near foreclosure. Well, I kind of put the breast issues aside. It's been a year now and we are all kind of getting on our feet and after reading your blog I realize I've been kind of Ostriching (the whole head in the sand kind of thing) and it's time to TAKE CARE OF ME. MY KIDS REALLY NEED ME. THANKS FOR THE REMINDER.

Bionic Dee said...

I have a history of lung cancer in my family. The tough one with that is I go back and forth thinking if i lead a healthier life and eventually quit smoking maybe that will help. But when there's a history like that staring you in the face eventually you have to make those kinds of decisions. If I find out that I'm in a situation like that I'd rather have preventative surgery then lose out on time with my family because I'm worried about when cancer will catch up to me.

Julia said...

https://www.sevenly.org/
if you have time..check them out..they are supporting breast cancer for this week..they make special tshirts to support a cause..the designs are pretty cool.

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