"I Chose a Prophylactic Double Mastectomy...and I Didn't Have Breast Cancer"

With a Family History, She Opted for Elective Surgery and Breast Reconstruction

Paula Sophie (not her real name) has always had the feeling that breast cancer was "going to come and get her." Her mother died of the disease and her sister is a breast cancer survivor. A lifetime of fear led Sophie to a decision that made perfect sense to her. She chose elective surgery to remove her breasts.

She knows some will say that her prophylactic double mastectomy was a radical choice and that she might never have developed breast cancer.

But she wasn't willing to live with the threat hanging over her head.

Sophie has told very few friends and relatives about what she's done, partly because her privacy is important to her and partly because she knows reactions may vary. In a culture where many women choose lumpectomy instead of mastectomy to keep their breasts intact, she understands how painful and difficult a decision like this can be.

In her own words, Sophie explains why she chose a double mastectomy and how it's changed her life.

Outliving Family History

My sister and I both grew up under the “breast cancer” cloud. Our mother was diagnosed at age 34 and died at 41. The knowledge that breast cancer could be hereditary was with me 24/7.

I know other women growing up with a family history of breast cancer feel the same way. You know what your legacy is, but because you're in your twenties you still feel immune. However, every form you fill out, every interview you have in the examining room, your family history looms large.

Nobody wants to take any chances with you.

It wasn't until my 30th birthday - when I had my baseline mammogram and my chart had the stamp of “family history”- that the fear began. The grief of my mother's loss, and the knowledge that it was due to breast cancer had always been present in my life. But once I turned 30 and became a mother, the fear kicked in.

I had so much more to lose now. I didn't want to leave my children motherless as I had been.

Each year I had annual mammograms and extra exams by a surgeon. Extra precautions were taken including many biopsies that turned up nothing but frayed nerves. The mammograms were especially unnerving. "Seek and you shall find," I thought...and worried. Each year as I sat in my gown waiting to be told I could get dressed and no more “views” were needed, I thought, "This could be it—the year it happens to me."

Choosing Genetic Testing

When I was 36 I decided to take the test for the breast cancer gene: BRCA 1 & 2. It was a simple blood test. I paid around $1,000 out of pocket. I made a deal with myself. If the genetic test came back negative I would let myself off the hook. I would continue to be vigilant about early detection but I wouldn’t identify so much with every woman’s sad breast cancer story. I would try to remind myself that I wasn’t doomed and breast cancer wasn’t coming to get me as it had my mother. We didn’t know if my mother carried the gene but if I tested negative I would assume (or pretend) that I was in the general female population and maybe a diagnosis of breast cancer was not my fate.

The test came back negative. I cried with relief. I knew from my research that hereditary breast cancers were actually the minority of cases but l I was still relieved in a big way that I didn’t carry the breast cancer gene.

The black cloud dissipated for a few years. But then it came back with a vengeance.

Making a Deal With Myself

My sister was diagnosed with pre-menopausal breast cancer at age 48. It was a nightmare but on some level we knew it was coming.

That’s just how it feels when you live under the cloud.

My sister had a double mastectomy, chemo, radiation, hair loss—the works.

"Okay," I thought. "Time to make another deal with myself." I asked my sister to undergo genetic testing. I reasoned that if she tested positive for the breast cancer gene I could let myself off the hook big time since I tested negative.

I could assume it was hereditary and I escaped.

If she tested negative I would assume it does run in our family and they just haven’t identified the genetic code for this kind of aggressive familial breast cancer. In that case I would have a prophylactic double mastectomy.

She tested negative.

I knew I was next.

And finally, that was what led me to this decision.

Contemplating the Mastectomy

For years, I'd thought about having a prophylactic double mastectomy and wondered what compelling thing would have to happen in my life for me to do it. If any biopsy came back positive...when I heard of new people being diagnosed...I thought about what I'd do.

Since a close family member was an oncologist, I knew about every different circumstance and all the possibilities and options out there.

When I heard what other people had done and how they took different approaches, I remember thinking, "If that had been me, that breast would have come off."

So when my sister was diagnosed - and the genetic testing showed we were both negative for the breast cancer gene -I opted to have my breasts removed. I’ve heard people, including some doctors, say that having two healthy breasts removed in the name of prevention is a radical step. Not for me.

I realize there might have been a possibility that I'd never develop breast cancer.

But it's not about statistics - it's about how you feel inside. It gets to the point that you just don't want this hanging over your head anymore.

I was married, had my children and was ready to say good-bye to my two anxiety provoking appendages.

From Surgery to Reconstruction

To be perfectly honest, I was more afraid of the enormity of the mastectomy and reconstruction process than sad over losing my breasts.

I’ve always been a baby about medical procedures and this whole thing seemed too bad to be true. I had to find a general surgeon to remove the breasts and then find a plastic surgeon to work side-by-side with him to start the reconstruction process.

If you opt to have reconstruction at the same time as your mastectomy you need to have “expanders” placed behind the chest muscle and have saline injected into the “expanders” every few weeks until you have reached your desired breast size.

Then you have another surgery where the permanent implants replace the expanders.

So I did all that, but I kept it a secret from nearly everyone except a few close friends. It was a personal decision that I didn’t want to discuss for several reasons, the main one being personal privacy.

Breasts are a private part that we keep hidden from the public. I had a large chest growing up and when I was younger, guys stared at it and I was never flattered - I felt uncomfortable. Once I had the double mastectomy, I didn't want to be the object of curiosity. I didn't want to invite more people to stare at my reconstructed chest.

Implants Compared to Breasts

There are a couple of positives that the implants offer. Because I was large chested, the shoulder straps of my bras always dug into my shoulders. If I wanted any support, I had to wear uncomfortable underwire bras that I would always take off the minute I got home. With implants, you don't need to wear a bra, thus no more uncomfortable straps. Another benefit is that your breasts are now firm and perky. No more "National Geographic Hanging Breast" syndrome - I finally had more than a few inches between my belly button and the bottom of my breasts.

It makes you look younger and thinner.

Still, it's not worth the trade. The first year, every time I went to roll on my side in bed at night, I woke up from the pain. There was the healing process, and there was soreness.

When It's Not 'Cancer' Surgery

I discovered there isn’t any real support for women undergoing prophylactic mastectomy. The support goes to the women who are having the surgery because of a cancer diagnosis, and rightly so. They have a lot more challenges ahead of them than I did.

My plastic surgeon’s office offered very little information of any kind. I had to call them the day before the surgery to ask what I should bring to wear home from the hospital.

I had no idea what to expect. The only information came from a 5 minute video I saw in the office that detailed the surgical procedure. The film was geared toward breast cancer patients.

They didn't give me any guidance or support, or explain all the things I should be doing to make healing easier. Technically, my surgeon did a good job but I had no idea of what to expect afterwards.

Missing Emotional Support

Keeping it a secret makes it more difficult to get first-hand information and advice. If you join a breast cancer support group you have any number of people to help you with the process. While you're in the hospital, a survivor visits you and provides support. But if you're not a survivor and you keep it a secret, you miss out on that support.

Because I didn’t share my situation I did not have a ‘community’ of people helping me. I traded emotional support and casseroles for privacy.

My plastic surgeon was technically proficient but a real jerk.

He inserted implants that were not the size I asked for. They were huge and too big for my frame. I had to wait three months and have the implant surgery redone by someone else.

During that time I googled answers to my many questions, relying on a few excellent plastic surgery websites that offered detailed information.

TV Vs. Reality

At the time I did this, all the plastic surgery-based TV reality shows were big hits. You could see surgeons reshaping imperfections. I couldn't help but compare those TV results to my misshapen results -an end product that even doctors themselves admit falls short of what reconstructive breast surgery should be able to achieve.

Although these shows provided a glimpse of what goes on, every woman who's undergone reconstructive surgery at the time of her mastectomy knows it's a lengthy and challenging medical procedure. And afterwards, I couldn't complain to my doctors about the outcome. The surgeon who inserted the too-large implants was very dismissive when I asked about the cosmetic results, saying to me, "Be thankful that you don't have cancer."

However, the relief in not having any breasts far outweighed anything else.

Mothers and Children

My children were too young to understand what was going on, so I simply said I was going to be in the hospital for a few days. I explained, "Because Mommy's sister just had breast cancer and Mommy doesn't want to get it, they have invented a special operation where they scoop out the insides of Mommy's breast and give me a new inside so I won't get cancer." They just accepted what I said and we didn't talk about it all that much.

I know what I went through as a young woman with a family history, so I would hate to pass on to a daughter the continuing worry of breast cancer. There's a feeling of doom that you internalize. I've had friends whose mothers also faced breast cancer and beat it. Our lives are so different. Their story isn't one that has a sad, sad ending. For a girl watching her mother die, it has a unique and profound effect on her and her life forever. For them, it's not on the front burner as it was for me.

I read an article recently where a woman had a prophylactic double mastectomy and the doctor himself tried to talk her out of it, telling her it was a drastic measure and she really didn't need to do it. The woman said, "They don't know what it's like walking around knowing that they may soon get breast cancer." The removal of your breasts takes away that risk.

It's Not About Bravery

Friends whom I've told about my elective double mastectomy tell me I was brave, but I wouldn't necessarily use that word to describe what I did.

If I were brave, I would have ridden it out. I wasn't brave - I was aggressive. My level of worry was escalating every year and I just couldn't live with the tension. Yet I can see how other people wouldn't make the choice that I made.

If I were brave, I wouldn't have to eliminate the unknown fear. But I was scared and tired of being vigilant. The relief that I experience from not having the threat and worry of breast cancer hanging over my head far outweighs any hardship I experienced medically and emotionally.

Today, I think nothing of these implants and I don't think of myself harboring a big secret.

I don't worry about anyone's opinion of what I did. It isn't a matter of right or wrong. I saw it with such clarity - it was the best thing for me to do. And with all of it behind me, and the overwhelming fear no longer present in my life, I truly have no regrets.