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More Than Half of Women Don’t Get Enough Information About Reconstruction From Surgeons

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Many, but not all, women who have mastectomy to treat breast cancer go on to have one or both breasts reconstructed. There are many ways to reconstruct a breast. Tissue from the back, belly, buttocks, or other part of the body can be used to create a new breast. Doctors call this autologous reconstruction. Saline or silicone gel implants are another option.

Like any surgery, breast reconstruction has both benefits and risks. recommends that you talk to all of your cancer doctors and your plastic surgeon about the best options for your unique situation. When you have all the information, you can make a decision that is right for you and your personal preferences.

Still, it seems that many surgeons aren’t giving women enough information about breast reconstruction.

A very small study suggests that more than half of women who had mastectomy made a reconstruction decision that didn’t align with their goals and preferences.

The study was published online on May 3, 2017 by JAMA Surgery. Read the abstract of “Quality of Patient Decisions About Breast Reconstruction After Mastectomy.”

It’s important to know that this study was very small -- only 126 women participated. Also, the women were all treated at the same institution, the North Carolina Cancer Hospital. So it’s not clear how widely the results can be applied.

To do the study, the researchers used a survey to ask the 126 women about their knowledge about mastectomy, as well as mastectomy followed by reconstruction, and the women’s preferences.

Questions asked about:

  • the effect of surgery on appearance
  • the risks of both mastectomy and reconstruction surgery
  • how the women wanted their breasts to look after treatment
  • how long the women expected recovery time to be
  • what the risks for complications were
  • factors that mattered most to the women after surgery

All the women either:

  • had been diagnosed with stage I to stage III breast cancer and were having mastectomy as part their treatment
  • were at high risk for breast cancer and were having prophylactic mastectomy to lower their risk

The women were about 53 years old.

Based on survey answers, the researchers found:

  • 82 women preferred to have mastectomy alone with no reconstruction; but only 39 of these women actually had mastectomy alone
  • 41 women preferred to have mastectomy with reconstruction; 36 of these women had mastectomy with reconstruction

Overall, 43.3% of the women made a decision about reconstruction that matched their preferences. That means that about 57% of the women -- more than half -- had treatment that didn’t match their preferences.

"We found that less than half of the women had adequate medical knowledge about breast reconstruction and made a choice that aligned with their personal preferences. This is very concerning to us, because it means that some women did not get the treatment they truly preferred, and quite a few had more treatment than they preferred," said Clara Lee, M.D., lead investigator of the study and a breast reconstructive surgeon at the Ohio State University Comprehensive Cancer Center. "As breast cancer providers, we need to talk about the pros and cons of surgery to help women make treatment choices. Shared decision-making between the surgeon and patient would be particularly useful for this decision. We need to connect patients with decision aids to help them really think through what is most important to them."

Deciding whether to have a breast reconstructed after surgery to remove breast cancer is a very personal choice. If you’ve been diagnosed with breast cancer and are planning your surgery, you may decide not to have reconstruction, but it can be helpful to consider all your options.

It’s important to talk to all of your cancer doctors and your plastic surgeon about the best options for your unique situation. Talking to a plastic surgeon who is experienced in the options you’re considering may give you the most complete review of all your choices. When you have all the information, you can make a decision that is right for you and your personal preferences.

Here are some questions you might want to think about as you're making your decision about breast reconstruction:

  • Is it important to you to have a permanent breast shape? Some women prefer to wear a prosthesis instead of having reconstruction.
  • Is it important to you that your breasts look balanced when wearing a bra and bathing suits? Though you'll be able to see the difference between the rebuilt breast and your other breast when you're naked, reconstruction usually looks very natural when you're wearing a bra or bathing suit.
  • In your unique situation, will breast reconstruction involve several surgeries over a long period of time? For many women, the answer is yes.
  • Will your insurance pay for all the reconstruction procedures? Find out what your insurance company will cover.
  • Did you have a lumpectomy that gave your breast a very different shape than it originally had? If you had a large portion of tissue removed, you might want to have reconstruction to restore a more balanced look.
  • Do you have any other medical conditions that might affect your ability to heal after surgery? If you have diabetes, circulatory problems, or a bleeding disorder, it may take your body longer to heal from reconstruction surgery than someone who doesn't have these conditions.
  • Do you have a condition that might give you a distorted image of your body? If you've been diagnosed with anorexia or bulimia, you may have a hard time accepting how your body looks in general, which may make it hard to accept how your reconstructed breast looks.

Talking to other women who have had breast reconstruction can give you more personal opinions about your options. There’s nothing like hearing from other women who’ve had it done -- and they may even be willing to share photos. Some great places to go are the Discussion Board forums called Breast Reconstruction and Living Without Reconstruction After a Mastectomy, where women share experiences and support each other. The site BreastFree is devoted to sharing stories, photos, and other information about opting to have no reconstruction after mastectomy. Many women call this "going flat."

For much more information, including types of reconstruction and the timing of reconstruction, visit the Breast Reconstruction pages.

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