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Choosing Not to Have Reconstruction — Are You the Only One?

If you’re facing a mastectomy, you may be surprised to find that virtually everyone expects you to have reconstruction. Your doctors, your friends, and even your family may believe that without reconstruction you won’t be happy and you won’t feel whole or feminine. But what if you don’t share these concerns? What if you don’t think reconstruction is right for you?

Perhaps you want to avoid extra surgery and the added risk of complications and chronic pain, or maybe you simply prefer no breasts to reconstructed ones. Whatever your reason for choosing not to have reconstruction, it can be disconcerting if your doctors and the people who care about you don’t understand your decision. You may feel isolated and even start to doubt your own wishes. But let me assure you — you’re not alone!

Many women who visit my website, BreastFree.org, tell me how relieved they are to discover a community of women who agree that non-reconstruction is the best choice for them. Sometimes, these women have struggled to find a surgeon who will support their wish not to have reconstruction. In a couple of worst-case scenarios, I’ve heard from women whose doctors insisted that they see a psychologist before they would agree to perform a mastectomy without reconstruction.

I’ve long wondered why so many doctors believe their patients would be better off with reconstruction than without. It’s certainly not for medical reasons, since once a mastectomy is deemed necessary, simply removing the breast is the least invasive option. And detecting a recurrence after a simple mastectomy is at least as easy as after reconstructive surgery.

Perhaps some physicians believe that they or their loved ones would feel disfigured without reconstruction, so therefore assume their patients would likewise feel disfigured. Maybe friends and family have similar concerns. While well-meaning, these assumptions can put you on the defensive and make you feel that you have to justify your decision not to reconstruct. This is why it can be so helpful to connect with other women who have never regarded their mastectomies as disfiguring.

When performed by a skilled surgeon, a mastectomy without reconstruction can leave your chest looking smooth and flat, with a thin incision that will become almost invisible. If you want the appearance of breasts, you can always wear breast forms. I like to think of breast forms as external prostheses, whereas women who choose reconstruction have internal prostheses. Some women don’t feel the need to use breast forms at all, preferring to go flat. Far from being viewed as disfigured, women who go flat usually find that few people even notice.

Though your friends and members of your family may advocate reconstruction, they may be unaware of its challenges. One of my friends opined that having implant reconstruction would be just like having breast augmentation. Only when I explained that after a mastectomy a tissue expander must be inserted under the pectoral muscle and gradually filled did she understand the difference. Another friend had heard about tissue flap reconstruction. Once I described the lengthy surgery and long time under anesthesia required, as well as the additional scars, she better understood my reluctance.

While most women who choose reconstruction do very well and are happy with their decision, I sometimes hear from women whose implant reconstruction has led to chronic pain. They tend to feel isolated and depressed about their situation and are relieved to learn that other women have experienced similar issues and have had their implants removed, in most cases alleviating the pain.

The women who visit BreastFree.org appreciate the personal stories, photographs, and advice they find there, all of which help them feel part of a community. But many also want a place where they can communicate directly with other women. For that, there’s no better resource than the Discussion Boards right here at Breastcancer.org. The Boards feature a forum specifically intended for women who choose not to have reconstruction — Living Without Reconstruction After a Mastectomy. Women often continue to participate in this forum for years after their diagnosis, helping newcomers and sharing experiences.

Have you faced a decision about whether or not to have reconstruction? If so, did you find support for your wishes?

After being diagnosed with two primary breast cancers in three years, Barbara learned she needed a mastectomy. She opted not to have reconstruction and subsequently founded BreastFree.org, a nonprofit website that presents non-reconstruction as a positive alternative to reconstruction. In addition to her work at BreastFree.org, Barbara writes essays on a wide variety of subjects. Many of them can be found on her personal blog, What, Me Worry?

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