Hereditary Breast and/or Ovarian Cancer Syndrome (HBOC)

Learning that you or a loved one has Hereditary Breast and Ovarian Cancer (HBOC) syndrome can feel overwhelming. You are likely facing complex medical information and deeply personal decisions about your future. This guide is designed to help you understand your diagnosis, evaluate your options, and advocate for the care you need.

What is HBOC?

HBOC is an inherited condition that increases your lifetime risk of developing certain cancers, most commonly breast and ovarian cancer. It is often caused by a mutation in genes like BRCA1 or BRCA2, though other genes can also be involved.

• Carrying a mutation is not a cancer diagnosis. It simply means your body’s natural defense system against cancer is less effective than average.
• Many people with these mutations live long, healthy lives by using this knowledge to catch issues early or prevent them entirely.

To learn more about the biology and the difference between a mutation and cancer, read the Validation and Orientation page.
For a detailed look at the different genes and what your test results mean, visit the Genetics and Testing page.
To understand the specific risks associated with different mutations, see the Cancer Risks and Genetic Differences page.

The Big Decision: Surveillance vs. Surgery

One of the most immediate struggles for a patient with HBOC is deciding whether to manage the risk through intensive screening or through preventative surgery. There is no single “right” answer.

For a deep dive into non-surgical management, read the Surveillance and Prevention Strategies page.
To explore surgical options and their emotional/physical impacts, read the Surgical Options for Risk Reduction page.

Age-Based Timeline Roadmap

Your plan will change as you age. While every patient is unique and this should be tailored with your doctor, a typical roadmap for a BRCA carrier looks like this:

• Age 25: Begin annual breast MRI screenings.
• Age 30: Add annual mammograms to your breast screening routine.
• Age 35-40: Discuss removal of ovaries and fallopian tubes (RRSO), especially for BRCA1 carriers, after childbearing is complete.
• Age 40: Men should begin prostate cancer screening (PSA testing), especially for BRCA2 carriers.
• Age 40-45: Discuss removal of ovaries and fallopian tubes for BRCA2 carriers.
• Age 50: Discuss pancreatic cancer screening if there is a significant family history.

Treatment and Care Team

If you are currently facing a cancer diagnosis, knowing your genetic status is incredibly powerful. Doctors can use targeted medications, such as PARP inhibitors, that specifically attack the weaknesses in BRCA-mutated cancer cells. Learn more on the Targeted Treatments and PARP Inhibitors page.

Because HBOC affects multiple aspects of your health over your lifetime, you need a coordinated team of specialists. Learn how to hire the right experts and prepare for your appointments on the Building Your Care Team page.