Getting any breast cancer diagnosis can feel impossible to navigate. And a stage IV breast cancer diagnosis can feel infinitely more overwhelming. (Stage IV breast cancer—also known as metastatic breast cancer (MBC)—is a cancer that originated in the breast but has spread elsewhere in the body. It’s considered a terminal diagnosis.)
“I think the most important first step is to take a deep breath and remember that although metastatic breast cancer is not curable, it is treatable,” says Julie Fasano, M.D., a medical breast oncologist at Mount Sinai Health System in New York City. “Women can do so well for such a long time without experiencing significant side effects related to their underlying cancer and from the treatment itself.”
But how do you get from “diagnosis” to “doing well”? Step one: “Come to your medical oncology consultation with a loved one,” Fasano says. “Having another person present to act a second set of ears is so important.”
In addition to a loved one, Fasano shares seven questions you should bring with you, as well.
What does my imaging show?
It’s important to understand what’s visible in your initial CAT or PET scans. From there, oncologists typically order new scans every two to four months to monitor the effectiveness of your treatment. “If therapy is keeping the cancer stable, then we continue treatment,” Fasano says. “If the therapy is no longer working, then we try a different treatment.”
What are my tumor markers?
Breast cancers express certain proteins (called tumor markers or biomarkers) that can be checked with blood tests. Your doctor can explain the results of your initial blood work—and how she’ll be monitoring your tumor markers to assess whether you’re responding to treatment.
Should I undergo genetic testing?
Only about 5% to 10% of patients have a genetic mutation (BRCA1 or BRCA2) that predisposes them to develop breast cancer. But if you’re in that minority, you might be a candidate for treatment with a type of medication called a PARP inhibitor.
What can you tell me about my tumor?
In short, your doctor will be able to tell you what causes your specific type of cancer to grow, stabilize, or shrink. The majority of breast cancers are hormone-receptor positive, meaning estrogen and progesterone “feed” the cancer. These types of breast cancer are most often treated with a combination of antiestrogen therapy and a newer class of targeted therapies called CDK 4/6 inhibitors, which, Fasano says, have revolutionized advanced breast cancer treatments. Your tumor may be HER2-positive or triple-negative. In all cases, these distinctions help dictate your treatment: If it’s triple-negative and expresses the PDL1 protein, you may be a candidate for immunotherapy. If it’s is HER2-positive, you’ll likely be a candidate for multiple HER2-targeted therapies.
Has my tumor been sent for testing?
“We often send the tumor for a genomic profile analysis,” Fasano says. “This analysis tells us if there are any mutations in the tumor, which could help us decide what future therapies we can use to treat the cancer. Also, if a tumor has a particular mutation, it may make someone eligible for a clinical trial.”
Am I eligible for any clinical trials?
Oncologists are always on the lookout for treatments that will increase the life expectancy of breast cancer patients. (You can learn more about clinical trials here.) “We’ve made so many strides in treating metastatic breast cancer because of clinical trials,” Fasano says, “which is why I am so hopeful for all of my patients.”
What side effects can I expect?
As you’re considering potential courses of treatment, you should understand the possible side effects of each. “There is so much that the doctors and nurses can do to mitigate the side effects of any treatments,” Fasano says. “We want to do everything we can to help patients maintain a good quality of life while undergoing cancer treatment.”