What Does it Mean If I Am “High Risk” for Breast Cancer?

I was only 47 when I was diagnosed with breast cancer. I had normal mammograms up to that point, which is what made the discovery all the more surprising. But after feeling two lumps in my breast, I alerted my doctor, who sent me for a biopsy. The biopsy was positive for invasive breast cancer. Because the mammogram did not detect the masses, my breast surgeon ordered a breast MRI to ensure no further masses were noted in either breast. The MRI revealed the  two masses I had felt in one of my breasts, leading to a mastectomy and a lifestyle of vigilance since then.

When my breast cancer was diagnosed, I realized I had been a high-risk patient all along that slipped through the cracks. No one identified me as having a high risk of developing breast cancer despite having several risk factors. While annual mammography is an excellent way to detect breast cancer early for the woman with an average risk, high-risk screening guidelines are different. If my doctor had assessed my risk factors, they would have been screening me for breast cancer using other tools, such as MRI, years before my diagnosis. My nearly stage two diagnosis could have been found much, much earlier. 

And I’m not the only one. This realization steered my career as a physician assistant into the world of breast health, and I’ve made it my mission to ensure women–and men–know how to calculate their risk of breast cancer. When you know you are “high risk”, you can take steps to reduce your risk and/or increase the likelihood that cancer is detected at its earliest stages when it is most easily treatable.

If you have a 20% lifetime risk (or higher) of developing breast cancer, you’re considered “high risk”.

Women with an average risk of breast cancer have a 10 to 12 percent chance of developing it in her lifetime. For these women, mammograms are an effective way to detect signs of breast cancer as early as possible, when curative treatment options are the least aggressive. In fact, finding breast cancer early through screening is one of the best ways to save lives from the disease. Fortunately, survival rates exceed 90 percent for breast cancers detected in the earliest stages, long before symptoms or lumps develop. 

However, many people don’t know that screening guidelines are different for women who have a lifetime risk of breast cancer greater or equal to 20 percent. In addition, many women don’t even know if they have a high risk of breast cancer, unless they or their primary care provider are diligent in calculating their risk. Doing so requires having the time to discuss a lot of questions, which can be nearly impossible in a 15-minute visit with your doctor. 

After my diagnosis, I also discovered risk stratification—an approach that weighs data to determine the right level of care for a group of patients—was not really being done at that time. There were no standardized ways to calculate an individual’s risk of breast cancer based on a variety of factors. Many people believed that if you had a family history of breast cancer, you probably had a higher risk of breast cancer, and if you didn’t, then you were safe from the disease. While family history plays an important part of breast cancer risk, now we know there’s a lot more to it. 

How can I determine my breast cancer risk?

Everyone has some level of risk of developing breast cancer, but those with a high risk may be more likely to develop the disease at a younger age. At our High Risk Breast Cancer Clinic at MedStar Good Samaritan Hospital, we assess the risk factors for every woman who visits us for their yearly mammogram. The goal is to identify women who are in the high risk category, as they’re the ones who will benefit the most from earlier and varied testing. 

We encourage women to come see us if they have close relatives with a history of cancer, especially if they have:

• A family member who was diagnosed with cancer before the age of 50 (e.g., mom was diagnosed at the age of 40)
• More than one blood relative with the same type of cancer
• Someone in the family that had multiple types of cancer (e.g., dad had both prostate and colon cancer)
• Any male family member with a breast cancer diagnosis
• Any family history of ovarian or breast cancer
• A known breast cancer gene genetic mutation, such as BRCA1 or BRCA 2
• A known cancer-related genetic mutation, such as Lynch syndrome

We also aim to risk-stratify women who have dense breast tissue as identified on a mammogram, as we know this can also increase your chances of developing breast cancer. Increasingly, more primary care providers and OB/GYNs are referring patients who meet this criteria as well. Just last month, actress Olivia Munn shared on social media that she was diagnosed with breast cancer at the age of 41, despite having a normal mammogram. And the only reason she was diagnosed was because her doctor decided to calculate her breast cancer risk. The results led to imaging tests, a biopsy, and ultimately, a double mastectomy. 

Breast cancer risk assessment models.

There are many different breast cancer risk assessment calculators, and they all involve a series of questions related to your health, personal history, family history, and genetics. One such tool is the Tyrer-Cusick Model Breast Cancer Risk Assessment. It involves answering a thorough questions about your:

• Family history of cancer going back two generations
• Age
• Body Mass Index, or BMI (calculated through your height and weight)
• Breast density
• Genetics
• Reproductive history (i.e., such as age you started your period and/or menopause, or age you first gave birth, if you have)
• Previous biopsies
• And more

The assessment generates a number that predicts your risk level of developing breast cancer. If someone had calculated my risk before my diagnosis, I would have been identified as high risk on account of several factors:

• My mother had cancer
• I had dense breast tissue
• I had my first child after the age of 30

Information is power. When you know your risk level, you can make educated decisions about your health, which can help to reduce or risk or catch cancer early when it’s easily treatable.

Take the free breast health risk assessment.

What should I do if I am “high risk”?

The good news is that there are many ways we can support and care for women and men who are considered “high risk” for breast cancer. We offer a comprehensive range of services through our High Risk Breast Cancer Clinic to help patients better understand and manage their risk factors, including:

• Regular clinical breast exams
• Individualized genetic counseling and/or testing
• Sophisticated breast imaging, including 3D mammography and magnetic resonance imaging (MRI) at earlier or more frequent intervals
• Lifestyle education in exercise and nutrition, which can help patients achieve a healthy BMI
• Referrals to our oncologists and surgeons when chemoprevention or preventive surgeries are recommended for consideration
• Coordination with other MedStar Breast Health specialists under the same roof 

Your healthcare providers can tailor recommendations to you based on your unique risk factors, but in general, screening guidelines for “high risk” individuals may involve:

• Undergoing a clinical breast exam one to two times per year
• Getting screening mammograms if over 40, OR
• Starting mammograms ten years before the youngest case of breast cancer in your family (e.g., if your mom was diagnosed at 40, you may benefit from beginning mammogram screening at 30) 
• Supplementing screening with a breast MRI, again beginning ten years prior to the earliest case of cancer in your family

Our goal is to identify women who have a higher than average risk so we can monitor them in a more personalized way. This ensures they can be screened and diagnosed at the earliest possible time when it is more easily treatable. We have more information about breast cancer than ever before, and there are so many great treatment options available today, so you don’t have to fear. My story has a happy ending, and we’re here to help you have control over your story, too.