Better access to surgery information may improve reconstruction decision making

An article published in JAMA Surgery suggests that even while some state laws are mandating changes in the way doctors discuss the safety of breast implants and the pros and cons of having immediate or delayed reconstruction, gaps in education still remain.

Those that get the least information include African-Americans and older people, those with less education, and those undergoing chemotherapy or living with chronic diseases in addition to breast cancer, such as heart disease or diabetes.

Background and goals

In studies of women who had mastectomy from 2003 to 2007, only 25 to 35 percent had reconstruction, despite guaranteed insurance coverage under the Women’s Health and Cancer Rights Act of 1998. Though data showed that more doctors talked about reconstruction with women after the 1998 act, this study explored whether women’s needs were being met and whether any gaps in awareness or education existed.

Design

A total of 3,252 women, ages 20 to 79, and diagnosed with ductal carcinoma in situ, DCIS, or stages I to III invasive breast cancer, were identified from registries in Los Angeles, California and Detroit, Michigan and sent an initial survey. Special attention was paid to identifying Latina and African-American women.

The team analyzed surveys from a total of 485 women who reported having mastectomy without reconstruction during the initial interview, completed the follow-up survey, and also did not have breast cancer return.

• Participants were interviewed an average of 9 months after diagnosis, and sent a follow-up survey about 4 years after diagnosis.
• The interview and follow-up surveys asked questions about their satisfaction with the decision about whether to have reconstruction; whether they felt regret about the choice they made; and whether they were satisfied with the information given about breast reconstruction.
• The survey also examined the reasons why participants did not have breast reconstruction or delayed reconstruction.

Results

The study found that African-American women, older women, those with no more than a high school education, without private insurance, with any other major condition and residing in Los Angeles County, were significantly less likely to have reconstruction than their peers. Overall:

• 41.6 percent of the 485 women had breast reconstruction
• 24.8 percent had reconstruction at the time of mastectomy
• 16.8 percent delayed reconstruction

Aside from ongoing treatment needs, reasons women said they avoided reconstruction included

• worry that they might need to take too much time off of work or away from family
• fear of implants, procedure complications, or concerns about future detection of cancer
• insurance coverage concerns
• the need to focus on chemotherapy, radiation therapy or other cancer treatment
• not knowing reconstruction was available

“This study suggests that most women who want breast reconstruction have access to the procedure, but many choose not to undergo reconstruction because they have other priorities at the time of cancer diagnosis,” said study author, Monica Morrow, MD, FACS. “The study results also identify some areas where additional patient education regarding the safety of reconstruction in general, and implants in particular, would be useful.”

Limitations

These results were limited to women from two U.S. cities and may not reflect national access to reconstruction, particularly in rural areas where plastic surgeons may be less available.

What this means for you

Whether you are newly diagnosed or undergoing treatment, you should feel empowered and entitled to seek full guidance on reconstruction options. This study shows the need for improvement of decision-making tools and better reconstruction education. It also highlights that some U.S. women may not be able to access the same quality of care as their peers. You may find comfort in knowing that information is available when you need it – from insurance coverage to addressing and overcoming your fears.

You may find it helpful to talk to a plastic surgeon who can discuss all of your options and surgery pros and cons before making a reconstruction decision. If you are having trouble finding a plastic surgeon in your area, ask your oncologist or breast surgeon to refer you to one or contact the  American Society of Plastic Surgeons.

Morrow, M, Li, Y, Alderman, A, Jagsi, R, et al.  Access to Breast Reconstruction After Mastectomy and Patient Perspectives on Reconstruction Decision Making. JAMA Surgery. 2014; doi:10.1001/jamasurg.2014.548