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The place for previvors and others at high risk for breast cancer
The average American woman has a one in eight chance of developing breast cancer in her lifetime. But some people are more likely than others to be diagnosed with breast cancer because they have a strong family history of breast cancer or they carry an inherited genetic mutation that can increase risk, such as BRCA1, BRCA2, PALB2, and others. These same genetic mutations are often linked to other cancers, including ovarian cancer.
Previvor is a term that’s often used to describe people who have never been diagnosed with breast cancer and have a high risk of developing it. Learning you have a higher risk of breast or ovarian cancer can leave you feeling anxious about the future. But increased risk does not mean that you will definitely get cancer. There are risk-reducing steps you can take, with guidance from your healthcare team.
Below, we’ll walk you through information and support that can help you have conversations with your care team, connect with others who share your experience, and make decisions that work for your life.
Do you have a family history of breast or ovarian cancer, or other risk factors? Watch this video to learn:
Thank you to Susan M. Domchek, MD from the Basser Center for BRCA at Penn Medicine.
A breast cancer previvor is a person who has a high likelihood of developing breast cancer but has never been diagnosed. This includes people who:
The term previvor comes from a nonprofit organization called Facing Hereditary Cancer Empowered (FORCE). FORCE’s mission is to improve the lives of individuals and families facing hereditary cancer by:
FORCE originated this term to help people at increased risk to identify with their health journeys and with each other. To create the word “previvor,” FORCE chose the combination of “predisposition”—which means increased likelihood—and “survivor.”
Before FORCE coined the term previvor, people at high risk had been called unaffected carriers, a term many felt did not capture the unique issues they face.
Each year, during National Hereditary Cancer Week, National Previvor Day honors people who identify as previvors. A pink and teal ribbon was created to commemorate and celebrate previvors. Visit FORCE to learn more about National Previvor Day and to find out this year’s dates.
Different people at high risk view the term previvor in different ways:
You may suspect you’re a previvor if:
For some people, family history doesn’t seem strong enough to point to hereditary cancer. Still, it is a good idea to learn about features in a family that suggest possible hereditary cancer risk. Visit Genetic testing for inherited mutations to learn more.
If you are concerned about your risk, ask your doctor to refer you to a genetic counselor. Genetic counselors and other medical providers trained in risk assessment can calculate your risk of developing breast cancer using:
The National Society of Genetic Counselors also has a resource to help you find a genetic counselor in your area.
Even if you test negative for known gene mutations, a genetic counselor can help you understand what your family history means for your personal cancer risk.
Understanding the strength of your family cancer history and whether you carry a gene mutation will help you have better conversations with your doctor about risk-reducing actions you can take.
Genetic testing is a way to confirm whether you have an inherited genetic mutation that increases the risk of breast cancer. If you’re unsure about whether you’re a previvor and worry about your risk, ask your doctor to refer you to a genetic counselor to discuss the benefits and limitations of genetic testing for mutations in BRCA1, BRCA2, and other cancer-related genes.
Genetic testing has many benefits for people who have not been diagnosed with breast cancer. Genetic testing can:
Keep in mind that most people with a family history of breast cancer do not have an inherited gene mutation that greatly affects their future cancer risk. A genetic counselor will talk with you about your family history and any prior testing in your family to help you decide:
If you have never been diagnosed with breast cancer, a genetic counselor will likely recommend genetic testing if one or some of the following are true for you:
The above is not a complete list, and a genetic counselor may recommend testing based on other factors.
Genetic tests can confirm the presence or absence of many different inherited genetic mutations, including BRCA1, BRCA2, ATM, and more.
BRCA1 and BRCA2:
Lifetime risk of cancer can change based on the most current research. Facing Hereditary Cancer Empowered (FORCE) monitors information on cancer risk for mutations including BRCA1, BRCA2, and each of the following:
A genetic counselor can help you understand the level of risk for breast cancer and other cancers associated with a mutation in one of these genes. A personal and family history of cancer can also affect:
Just because you have a family history does not mean you carry the genetic mutation — one of my aunts tested negative. And if you do have it, that does not mean you have cancer.
Whether you learn you’re a previvor because you test positive for an inherited genetic mutation or because a risk assessment tool shows you have a high risk for breast cancer, there are risk-reducing actions you can take to protect your health as much as possible.
The American Cancer Society recommends women at high risk of breast cancer get a breast MRI and a mammogram yearly, starting at age 30. Women are considered at high risk when:
If you test positive for an inherited genetic mutation that increases the risk of breast cancer:
It’s important to talk to your healthcare team about the benefits and risks of taking medicine or having surgery to reduce the chance of developing breast cancer. Both are valid options based on your risk profile and personal preferences.
Ask your doctor to review the latest screening and risk-reduction guidelines from the American Society of Clinical Oncology (ASCO) and National Comprehensive Cancer Network (NCCN) with you to see if they apply to your situation.
Your age can affect your decisions about a risk-reduction plan in different ways:
If you and your doctor decide that risk-reducing medicine is a good option for you, age can affect the kind of medicine that may be recommended:
Depending on individual level of risk, some women may choose to have a risk-reducing surgery that removes the ovaries and fallopian tubes (salpingo-oophorectomy).
It’s important to know that in premenopausal women, salpingo-oophorectomy can cause immediate, permanent menopause. This can mean significant side effects that can come on suddenly, including hot flashes, vaginal dryness, and the end of menstrual cycles. If you are being encouraged to consider salpingo-oophorectomy, talk with your healthcare team about ways to help manage possible menopause symptoms.
If you’re a breast cancer previvor and you have not gone through menopause, talk with your doctor about risk-reduction strategies that make sense for your life.
find your people
Our private Facebook group, Support Community for High Risk, is for people with a high risk of developing breast cancer, ovarian cancer, or both due to a strong family history of cancer, personal health conditions, or inherited gene mutations. It offers peer-to-peer support to safely ask and answer questions about managing your health, and to get and give support from others who understand.
If you’re a breast cancer previvor, there are resources to help you make decisions about your health and other concerns. These include:
For more information and support, visit:
How do I know if I need genetic testing?
Your doctor and a genetic counselor can help you decide if you would benefit from genetic testing. They make this decision based on:
If I am living with a high-risk genetic mutation, when is the right time to begin breast cancer screenings?
If you have tested positive for a high-risk inherited genetic mutation, the age to start screening depends on the specific mutation and other factors individual to your situation. These include whether cancer was diagnosed in any family members, and if so, how old they were when it was diagnosed. For example:
It’s important to talk with your doctor about your individual risk and what type of screening plan they recommend.
If I am living with a high-risk mutation, how often should breast cancer screenings be done?
The American Cancer Society recommends that women at high risk for breast cancer have a breast MRI and a mammogram each year, usually beginning at age 30. Some cancer centers and doctors recommend that regular MRI screening begin earlier, at age 25. If you have a high risk for breast cancer, it’s important to talk with your doctor about your individual situation and screening plan.
How do I explain to my family what it means that I tested positive for a high-risk breast cancer mutation?
Discovering you’re a breast cancer previvor can impact family and other relationships. Whether you have a positive genetic test or someone else in your family does, the news can feel complicated.
If you test positive for a high-risk breast cancer mutation, it’s possible that siblings, parents, aunts, uncles, or cousins could have a mutation, too. Depending on your relationships with family members and how near or far they live from you, discussing your results may be easy or hard.
Genetic counselors and other providers may be able to offer guidance for sharing this information with family members. Although this can lead to difficult conversations, sharing the information is important so that family members can make decisions. There are some life-saving options for people with a known hereditary cancer mutation.
How expensive are genetic tests?
If you meet genetic testing guidelines requirements, your insurance plan may cover some or all of the cost. Most laboratories will offer testing for $250 for people without health insurance or if their insurance does not cover testing. Some laboratories also offer financial assistance.
A genetic counselor can provide guidance on the cost of testing. Some clinical trials offer genetic testing, so it’s worth a conversation with your doctor or genetic counselor. You can also visit FORCE for low-cost testing options.
Does insurance cover genetic testing?
Most health insurance plans cover all or some of the cost of genetic testing for people who meet guidelines requirements for genetic testing, but not all plans do. Your genetic counselor can help confirm whether you meet the standard requirements. Once you have this information, check with your health insurance company about whether testing is covered in your situation.
What kinds of support groups are available?
These organizations offer support communities for people at high risk:
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Reviewed and updated: December 20, 2024
Reviewed by: Virginia Kaklamani, MD, DSc , Kelsey Spielman, MS, LCGC
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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.
