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"I Chose a Prophylactic Double Mastectomy " - Good and Bad Aspects

In Keeping the Procedure a Secret, She Missed Out on a Community of Support


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.

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