Genetic testing for breast cancer: Psychological and social impact

Genetic testing to estimate breast cancer risk may prompt many emotional and psychological reactions. How will getting the news that you've tested positive or negative affect you?

By Mayo Clinic Staff

There's a lot of information to take into consideration when you're thinking about getting a genetic test to find out if you carry one of the breast cancer susceptibility genes. You may have already considered the practical aspects of genetic testing, such as which test to undergo and the potential costs.

But also consider some of the psychological, emotional and social implications of your genetic testing results. Here are some things to think about as you decide whether genetic testing for BRCA1, BRCA2 or the many other genes related to breast cancer is right for you.

Positive test results

If genetic testing reveals that you carry a gene with changes that increase your risk of breast cancer, you might experience a range of responses to learning your test results, including:

  • Anxiety about developing cancer. Carrying an altered gene doesn't mean you'll definitely get cancer. Test results can't determine your exact level of risk, at what age you may develop cancer or how aggressively the disease might progress.
  • Relief of knowing your risk status. You may view your test results in a positive light: Now you know what you're up against. You can step up cancer surveillance efforts or take risk-reducing steps, such as preventive surgery or medications. You also have the potential to inform and educate family members who may be affected.
  • Strained family relationships. Some of your relatives may not want to know there's been a worrisome gene detected within the family. But it may be hard to keep the truth from close family members if you're planning proactive measures, such as preventive surgery. Give thought beforehand to how — or even if — you'll share your test results with family members.
  • Worry about passing a gene to your child. Learning your genetic status could prompt fears that your children may have inherited the gene. If you learn that you are a carrier of a gene linked to breast cancer, this can lead to more questions and anxiety about when is the best time to discuss the results with your children.
  • Stress over major medical decisions. Receiving a positive test result means you'll want to consider cancer prevention and early detection strategies that are best for you. Discussing options with a genetic counselor, breast specialist or oncologist can help guide you.

Talk about these — or any other — concerns with your genetic counselor or other health care provider.

Negative test results

Learning that genetic testing found no gene changes that could increase breast cancer risk might produce feelings of:

  • Relief that you're less likely to have an increased cancer risk. If your test result is negative for gene changes that have been identified in other family members, you may feel like a huge weight has been lifted off your shoulders. However, given your family history, you'll want to develop a screening plan with your health care provider that is right for you based on your particular situation.

    It would be a mistake to let your negative test results lull you into a false sense of security. You still face the same level of cancer risk as the general population — or maybe slightly higher because of your family history.

  • "Survivor" guilt. Testing negative for gene changes that increase the risk of breast cancer may bring on feelings of guilt — especially if other family members do carry the gene changes and face an increased cancer risk.
  • Uncertainty about your cancer risk. A negative test result doesn't mean you have no risk of cancer. It may be difficult for your health care providers to draw definite conclusions about your risk of cancer.

Variant or unknown test results

In some instances, testing identifies gene changes that haven't been seen in prior families with breast cancer, and there isn't enough information about the gene changes to know whether they cause an increased risk of cancer. This is known as a variant of uncertain significance.

Learning that you have a genetic variant of unknown significance may lead to:

  • Confusion and anxiety about your cancer risk
  • Frustration over the lack of accurate individualized cancer risk information
  • Challenges with making cancer screening, treatment and prevention decisions

Living with test results

Most people would be anxious if given the chance to find out whether their risk of a serious disease was higher than average. In fact, you may decide that you'd rather not know, and just forgo testing altogether. That's a valid choice.

It's also common to experience sadness, anxiety or even anger if your test results are positive. However, research shows that, in the long run, most people cope well with the knowledge of an increased cancer risk and don't experience significant distress over the test results.

If you test positive for a gene that increases your risk of breast cancer, know that you have time to come to terms with your results and consider what it means for your future. If you're thinking about surgery to reduce your risk of cancer, take your time to research and understand all your options. Sometimes it's helpful to seek a second opinion or meet with a breast specialist who can help you weigh the risks and benefits of the available options based on your individual situation.

For many, simply knowing their risk status eases psychological and emotional distress. They can be proactive and establish a personalized plan to deal with their increased risk.

Aug. 25, 2023 See more In-depth

See also

  1. 3D mammogram
  2. Accelerated partial breast irradiation (ABPI)
  3. Axillary dissection
  4. Biopsy procedures
  5. Blood Basics
  6. Bone scan
  7. Brachytherapy
  8. BRCA gene test
  9. Breast cancer
  10. Breast Cancer
  11. Breast cancer chemoprevention
  12. Breast Cancer Education Tool
  13. Common questions about breast cancer treatment
  14. Breast cancer prevention
  15. Infographic: Breast Cancer Risk
  16. Breast cancer risk assessment
  17. Breast cancer staging
  18. Breast cancer supportive therapy and survivorship
  19. Breast cancer surgery
  20. Breast cancer types
  21. Breast cancer-related lymphedema
  22. Breast implants and cancer
  23. Evaluating breast lumps
  24. Breast lumps
  25. Breast MRI
  26. Breast self-exam for breast awareness
  27. Cancer blood tests
  28. Cancer survivorship program
  29. Chemo targets
  30. Chemotherapy
  31. Chemotherapy and hair loss: What to expect during treatment
  32. Chemotherapy and sex: Is sexual activity OK during treatment?
  33. Chemotherapy for breast cancer
  34. Chemotherapy nausea and vomiting: Prevention is best defense
  35. Chest X-rays
  36. Complete blood count (CBC)
  37. Contrast-enhanced mammography
  38. Coping with pain after breast surgery
  39. COVID-19 vaccine: Should I reschedule my mammogram?
  40. CT scan
  41. Dense breast tissue
  42. Does soy really affect breast cancer risk?
  43. Dragon Boats and Breast Cancer
  44. Flat aesthetic closure
  45. Genetic Testing for Breast Cancer
  46. HER2-positive breast cancer: What is it?
  47. Hormone therapy for breast cancer
  48. Intralesional injection therapy
  49. Lumpectomy
  50. Magic mouthwash
  51. Mammogram
  52. Mammogram guidelines: What are they?
  53. Mastectomy
  54. What is breast cancer? An expert explains
  55. Minimally invasive inguinal lymphadenectomy (MILND)
  56. Modified radical mastectomy
  57. Molecular breast imaging
  58. MRI
  59. MRI-guided breast biopsy
  60. Nipple discharge
  61. Nipple-sparing mastectomy
  62. Oncoplastic breast-conserving surgery
  63. PALS (Pets Are Loving Support)
  64. Paulas story A team approach to battling breast cancer
  65. Pink Sisters
  66. Positron emission mammography (PEM)
  67. Positron emission tomography scan
  68. Precision medicine for breast cancer
  69. Prophylactic mastectomy
  70. Radiation therapy
  71. Radiation therapy for breast cancer
  72. Seeing inside the heart with MRI
  73. Sentinel node biopsy
  74. Skin-sparing mastectomy
  75. Stereotactic breast biopsy
  76. Support groups
  77. Surgical biopsy
  78. The Long Race Beating Cancer
  79. Thyroid guard: Do I need one during a mammogram?
  80. Tomosynthesis-guided breast biopsy
  81. Ultrasound
  82. Sentinel node biopsy for melanoma
  83. Mammogram for breast cancer — What to expect
  84. MRI
  85. Weight Loss After Breast Cancer
  86. X-ray