16 Min. Read
The place for previvors and others at high risk for breast cancer
Some people are more likely than others to be diagnosed with breast cancer. Previvor is a term that’s often used to describe people who have a high risk of developing breast cancer. At LBBC, we’re here for you. On this page, 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 or an inherited risk to breast cancer or ovarian cancer? Have you heard of BRCA mutation? Watch this video to learn how genetic testing can significantly reduce your risk of a late-stage cancer diagnosis, what screenings insurance might cover, and how to talk to your doctor about your breast cancer risk. Learn about the signs and symptoms of breast and ovarian cancer so you know what to watch out for.
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 likelihood of developing breast cancer but has not had the disease. This includes people who have:
The term previvor comes from a group called FORCE. FORCE wanted to create a term for people who have a high predisposition to developing cancer but haven’t been diagnosed with cancer. Predisposition to a disease, often due to a known high-risk genetic mutation, means an increased likelihood of developing the disease. Previvor combines the words predisposition and survivor. Previvors had been called unaffected carriers before this, but some people didn’t think that term was the best way to describe themselves and the unique issues they face.
Each year, during National Hereditary Cancer Week, National Previvor Day honors people who identify as previvors. As a commemoration and celebration of previvors, a pink and teal previvor ribbon was created. Visit FORCE to learn more about National Previvor Day and to find out this year’s dates.
If you’re a breast cancer previvor, it’s normal to have concerns about how high risk may affect your future. It may mean difficult decisions to make about what, if any, preventive actions you want to take. These options include undergoing frequent screening, taking medicines, and having surgery to reduce the chances of developing breast cancer.
Discovering you’re a breast cancer previvor can also impact family and other relationships. Whether it’s about you or another family member, this news can feel complicated. Learning that a blood relative has tested positive for a high-risk mutation or realizing there’s a strong family history of cancer (even without a known mutation) can bring up many different feelings and uncertainties.
People who are at high risk of being diagnosed with breast cancer may identify as previvors. Some people who have been treated for breast cancer don’t like the term, and may even feel offended by it, because many previvors haven’t gone through a diagnosis of and treatment for breast cancer. Still, for many people living with high risk, the term helps them connect with others who are having similar feelings and experiences.
Some people who’ve been treated for breast cancer in the past refer to themselves as survivors. Survivors can also be previvors. That means they have been diagnosed with and treated for breast cancer, but they have also tested positive for a high-risk gene mutation.
If you’re a breast cancer previvor, there are things you can do to manage your risk of developing breast cancer. They include:
It’s important for previvors to talk to their health care team about the benefits and risks of taking medicine or having surgery to reduce the chance of developing breast cancer.
There are many benefits of genetic testing for people who have not been diagnosed with breast cancer, and for those who have. Genetic testing can:
Keep in mind that most people with a family history of breast cancer do not have an inherited gene change that greatly affects their risk.
Genetic testing is not helpful for everyone. It’s important to know what information testing can and can’t give you. If you’re thinking about genetic testing, ask your doctor if you should consider seeing a genetic counselor. A genetic counselor can tell you if testing is a good choice for you.
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.
If you have already been diagnosed with breast cancer, a genetic counselor will most likely recommend genetic testing if you:
If you have not been diagnosed with breast cancer, a counselor will most likely recommend genetic testing if you:
To learn more, visit Genetic testing and Genetic testing and your relationships.
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:
Your age can affect your decisions about a risk-reduction plan in different ways:
Whether a woman has gone through menopause can also affect her decisions about steps to take to reduce her cancer risk. For example, if you have not gone through menopause, preventive surgeries that can help reduce the risk of developing breast cancer, such as ovary removal, can trigger early menopause and symptoms as hot flashes, vaginal dryness, and disruption or ending of menstrual cycles. This is a lot to consider, and not every previvor makes the same decisions about how to reduce risk. 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.
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 your personal and family history for breast cancer and other cancers, whether a family member has tested positive for the BRCA1 or BRCA2 mutation, and other factors you can read about in the genetic testing section above.
If I am living with a high-risk mutation, such as BRCA1 or BRCA2, when is the right time to begin breast cancer screenings?
The American Cancer Society recommends that women who have a high risk of developing breast cancer begin screening at age 30. Some experts and cancer centers recommend that regular MRI screening begin earlier, at age 25, with mammograms starting at age 30.
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?
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. You may want to ask your relatives if they want the results before you tell them. If family members do want to know, it might be helpful to prepare a list of information to give them when you share your results. Learn more about sharing results with your family.
How expensive are genetic tests?
The cost of genetic tests can range from a few hundred dollars to several thousand. If you have no health insurance or your insurance does not cover the cost of testing, there are other resources that can help. For example, some testing companies offer help with covering the cost. 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 have a high risk for breast cancer, but not all plans do. It’s best to check with your insurance provider.
What kinds of support groups are available?
These organizations offer support communities for people at high risk:
Related articles and posts
Sign up to receive emotional support, medical insight, personal stories, and more, delivered to your inbox weekly.
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.
