Health

Study: Patient outcomes and experiences of going flat

Summary:

Some patients with early-stage breast cancer or those considering risk-reducing surgery may choose mastectomy without reconstruction. This is often referred to as “going flat.” The results of this study suggest that surgeons play a significant role in supporting a patient’s decision to go flat. (3/23/2021)

Relevance:

This article is most relevant for Women considering mastectomy without breast reconstruction.

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Read the article that we reviewed

This article is relevant for:

Women considering mastectomy without breast reconstruction.

This article is also relevant for:

  • People newly diagnosed with cancer
  • People with a genetic mutation linked to cancer risk
  • Healthy people with average cancer risk
  • Previvors
  • People with a family history of cancer
  • People with breast cancer

Contents

At a glance
What does it mean to go flat?
Study findings
Strengths and Limitations
What does this mean for me?
In-depth
Clinical trials
Guidelines
Questions for your doctor
Resources and reference
Relevance Rating Details

STUDY AT A GLANCE

What is this study about?

This study focuses on patient experiences and satisfaction with their decision to undergo mastectomy without reconstruction.

Why is this study important?

Patients with early-stage breast cancer or those considering risk-reducing surgery usually have three surgical options. Breast conservation, mastectomy without breast reconstruction (“going flat”) or mastectomy with breast mound reconstruction.

The Breast Cancer Patient Education Act, passed in 2015, is federal legislation to help spread information on the availability and coverage of breast reconstruction, prostheses, and other options for breast cancer patients, especially patients who are members of racial and ethnic minority groups. The Women’s Health Care and Cancer Rights Act, enacted in 1998, requires health plans that provide coverage for breast cancer care to include coverage for breast reconstruction. However, many patients remain unaware of these rights.

This study looks at the motivations, experiences, and satisfaction of patients who chose to go flat. The results suggest that surgeons play a significant role in supporting their patients’ decision to go flat.

What does it mean to go flat?

If you choose to go flat, your breast tissue and most of your breast skin are removed, leaving your chest flat or slightly concave. Your mastectomy incision will typically run across the middle of your chest. You can ask your surgeon for an “aesthetic flat closure” as defined by the National Cancer Institute, so they understand you want a smooth, flat chest.

FORCE has created a Post-mastectomy Photo and Video Gallery with images and videos of individuals after mastectomy and reconstruction. The gallery includes images of those who have decided to go flat. You must obtain access before viewing the gallery.

Study findings

An online survey was completed by 931 women who had either breast cancer or risk-reducing surgery. Leaders of online breast cancer and Going Flat communities were encouraged to share the survey with their members. Going flat was the primary choice of most participants (73%).

Among survey participants:

  • Most women (74%) mastectomy alone was their first choice.
    • The top two reasons for going flat were wanting a quick recovery and avoiding having a foreign substance—a breast implant—placed in their body. (Note that breast reconstruction can also be accomplished without breast implants).
  • Most women were satisfied with their surgery.
  • A low level of support from a surgeon regarding a decision to go flat or “flat denial” was the strongest predictor of a patient’s dissatisfaction with their outcome.
    • Flat denial is a concept that originated with the Going Flat movement. It occurs when a surgeon advises against going flat, does not initially offer the choice of no reconstruction, or leaves excess breast skin to help with reconstruction regardless of a patient’s wishes.
    • A high level of flat denial was reported by 22% of respondents (207/931).
      • Flat denial was less likely to be reported by patients who had a female surgeon versus a male surgeon.
      • Flat denial was also less likely to be reported by those who had a surgeon with an extensive breast surgical practice.
  • The most satisfied patients were those who reported that they had enough information about their options and those who said that they had a surgeon who was exclusively a breast surgeon.
  • Dissatisfaction was associated with low level of surgeon support (flat denial), higher body mass index (BMI), and unilateral (mastectomy of only one breast) mastectomy.
  • Of respondents who had breast reconstruction but then went flat (139/931; 15%), the most common reason was a problem with the breast implant such as pain and rupture.
    • Other reasons included concern about developing breast-implant related illness (39/931; 4%), development of breast implant related illness (29/931; 3%), not happy with appearance of the reconstruction (24/931; 2.6%), loss of or other problems with flap (9/931; 1%).

Strengths and limitations

Strengths

  • Most of the respondents had a mastectomy without reconstruction in the past five years. This may have reduced recall bias.
  • This is the first tool designed by patient advocates to capture the satisfaction and experiences of women who chose to go flat.

Limitations

  • This study was limited to participants’ self-reported experiences and outcomes.
  • Many respondents were active in online Going Flat communities, and their reasons for going to an online community may have varied (e.g., those who were seeking support or those who were happy with their choice).
  • Participants were predominantly white, well-educated, and of higher socioeconomic status. This may or may not reflect the experiences of women in general.

What does this mean for me?

If you are considering going flat after mastectomy and need additional support, you may find support in online communities or with surgeons whose practices are exclusively devoted to breast surgery.

Share your thoughts on this XRAYS article by taking our brief survey.

Expert Guidelines

While no specific guidelines exist for patients who decide to go flat, the NCCN has outlined principles of breast reconstruction following surgery. These include the following:

  • Breast reconstruction is elective (up to the patient) and patients may chose not to have breast reconstruction.
  • Patients may have strong feelings about one form of reconstruction or no reconstruction. 
    • A number of things may impact a patient’s decision to have breast mound reconstruction or to go flat.  These may include the risk of complications, concern about breast implants and aesthetics. 
    • These factors must be taken into consideration when choosing the best surgical outcome.
  • Breast reconstruction or going flat should be a shared decision between the patient and their surgeon.

Questions for your doctor

  • Is going flat an option for me?
  • What are the risks and benefits of going flat?
  • What are the risks and benefits of having breast reconstruction?
  • What are the risks and benefits of having breast-conserving surgery?
  • Am I a candidate for an a esthetic flat closure?
  • Are there resources that you can recommend if I choose to go flat?
  • If I go flat, are breast implants or other reconstructive procedures an option later in life?

Open Clinical Trials

IN-DEPTH REVIEW OF RESEARCH

Study background

For women with early-stage breast cancer, surgical options include breast-conserving surgery, surgery followed by breast mound reconstruction and mastectomy without reconstruction, known as “going flat.” Cancer outcomes are similar regardless of the type of surgery.

Studies have reported conflicting results regarding quality of life and patient satisfaction with breast reconstruction compared to mastectomy alone.

Despite information about and access to breast reconstruction, some women choose mastectomy alone. Over the years, online communities have been established to provide information and support to women who are considering mastectomy. Together, these communities are the basis of the Going Flat movement. Importantly, the Going Flat movement has identified the concept of “flat denial” among surgeons who either do not offer the option of mastectomy alone, discourage women from going flat, or who leave excess skin to aid in later reconstruction against the patient’s wishes.

Researchers of this study wanted to know

Whether experiences of those who are active in Going Flat communities reflect reports in scientific literature, particularly what motivates a patient to have a mastectomy alone as well as their satisfaction with outcomes. Researchers also wanted to better understand patients’ experiences of flat denial.

Populations in this study

All participants were female at birth, although one identified as male at the time of the study. All respondents had mastectomy to treat or reduce an increased risk of breast cancer. Most chose mastectomy alone without breast reconstruction; however, a small subset of participants initially had mastectomy with breast mound reconstruction but ultimately went flat.

Study design

A patient experience survey was designed to capture the outcomes and experiences of service and support for patients who opted for mastectomy alone. Patient advocates contributed significantly to the survey development process.

The survey was posted online via Facebook, Twitter and a personal blog for one week (October 15, 2019-October 21, 2019). Participants in online Going Flat communities were encouraged to participate.

The survey consisted of 36 questions. Some questions regarding satisfaction with surgical outcomes and support by surgeons of the patient experience were scored using a 5-point Likert scale. The survey also included questions about demographics and clinical questions.

Study findings

Of the 931 eligible participants, the average age was 49. Most respondents were white (94%) and had private health insurance (71%). Mastectomies were primarily done in the United States (79%) but participants from 22 countries were represented.

Reasons for mastectomy included:

  • Breast cancer in one breast (79%).
  • Breast cancer in both breasts (15%).
  • Risk reduction due to an inherited mutation, family history or predicted high risk (6%).

Most respondents had bilateral mastectomy (80%). Some patients initially had breast reconstruction that was eventually removed (15%). Of these women (139), the reason for removal was a problem with the implant (96/139; 70%).

Among participants:

  • Mastectomy alone was the first choice for surgery for most (74%) patients.
  • Two-thirds of patients (65%) felt that they had enough information to make an informed decision about their surgery.
  • Most participants were satisfied with their surgery.
    • A low level of support from a surgeon of their patient’s decision to go flat or flat denial was the strongest predictor of a patient’s dissatisfaction.
    • Lower satisfaction was reported by those with a BMI over 30 and those having a unilateral mastectomy (one breast removed).
    • The most satisfied patients were those who reported that they had enough information about their options and those whose chose a surgeon who specializes in breast surgery.
  • Most patients felt that they received enough counseling before surgery and that their surgeon supported their decision to go flat.
    • A high level of flat denial was reported by 22% of respondents (207/931).
      • Flat denial was less likely to be reported by those patients who had a female versus a male surgeon.
      • Flat denial was also less likely to be reported by those who chose a surgeon who specializes in breast surgery.

The two most common reasons for going flat were the desire for a faster recovery and to avoid having foreign substances in the body. Few patients reported cost as a factor in their decision. About half of participants reported that they did not think their breasts were important for body image, while 23 percent included this as one of the top two reasons they considered going flat.

Strengths and Limitations

Strengths

  • Most respondents had mastectomy alone in the past 5 years. This may have reduced recall bias.
  • This is the first tool designed by patient advocates to capture the satisfaction and experiences of women who chose to go flat.

Limitations

  • This study was limited to participants’ self-reported experiences and outcomes.
  • Respondents were mostly white (94%) and relatively young. Many women were underrepresented in this study (e.g., older women, those in certain racial and ethnic minority groups and those without private insurance).
  • Most respondents were active in online Going Flat communities, and their responses may be biased. For example, they may have been more willing to openly discuss their experiences and outcomes than others.
  • The survey has not been formally validated, or tested in large numbers of women.

Context

This study found that most participants were satisfied with their surgical outcomes. This result is different from other studies which have reported lower levels of satisfaction for patients who have had mastectomy alone.

This study also found that flat denial, which indicates the extent to which patients felt unsupported by their surgeons, was experienced by 22 percent of respondents. This finding is consistent with other reports.

Conclusions

While this study reported that most women are satisfied with their outcomes, some patients reported that their surgeons did not support their decision to go flat. This suggests that there is a need for more research better surgeon education and tools to guide and support women who are not interested in breast reconstruction.

Share your thoughts on this XRAYS article by taking our brief survey.

Rating Details:

Relevance: Medium-High

  • This study is most relevant for women with early-stage breast cancer who are considering mastectomy alone or going flat.
  • This study confirmed the presence of ‘flat denial’ and measured how many women experience this and how it impacts their treatment decisions.

Scientific Strength: Medium-High

  • The tool used in this study was designed using input from patient advocates to measure and record patient outcomes among those who chose to go flat.
  • While the tool was not validated, it was successful in capturing concerns that have not been captured by other surveys among participants who went flat.
  • This study may not reflect the experiences of all women who choose to go flat.  Most participants were white, highly educated and of higher socioeconomic status. Results may not apply to all women.

Research Timeline: Post Approval