With all the pink-tinted breast cancer awareness that’s now part of our lives, it’s surprising how many people don’t know what metastatic breast cancer is, exactly—or even vaguely. One could argue that this is the type of breast cancer we should be the most acutely aware of, because metastatic breast cancer (or MBC) is the only type you can die from. “Metastasis” means that breast cancer cells have spread from the breast to other parts of the body, like the lymph nodes, bones, brain, or liver. Also called advanced breast cancer or stage IV breast cancer, metastatic breast cancer is always considered terminal, because it is not curable—unlike all other types of breast cancer, which you can often “beat” with treatment. For someone with MBC, the same encouraging words often given to people with early-stage breast cancer, like “you’ll beat this,” can be painful to hear, since they’ll always be living with the disease. Perhaps the scariest fact that most people don’t realize: Among people who have early-stage breast cancer and beat it, a shocking 30 percent will eventually see their disease return in the form of metastatic breast cancer, and the five-year survival rate is 28 percent. The stats are almost too discouraging to process, but nothing’s more empowering than knowledge—so here are some of the most important things to know about MBC, especially if you or a loved one is staring down this overwhelming diagnosis.
Metastasis doesn’t mean hopeless.
First things first: A metastatic breast cancer diagnosis is incredibly difficult to come to terms with, but it’s important to know there are reasons to stay optimistic (beyond the fact that it benefits your health). While it’s true that metastatic breast cancer is not curable, there are ever-expanding treatment options, with new breakthroughs happening all the time via clinical trials. In many cases, these treatments allow people to live much longer than MBC’s average life expectancy, often with minimal symptoms and treatment side effects and a good quality of life. Researchers are also rapidly decoding different types of breast cancer and how to specifically target each. Determining a metastatic breast cancer patient’s best treatment options starts with a tumor biopsy that determines the cancer cells’ unique characteristics, such as HER2 status (more on that below). Scans (PET, CT, MRI or bone scans) are used to establish exactly where cancer is located in the body and blood tests are used to detect tumor markers (proteins that indicate the presence of cancer). When you have metastatic breast cancer, scans are repeated every two to three months so your oncologist can monitor the effectiveness of your treatment plan. When a particular treatment plan is no longer keeping the cancer from spreading, a different one can be employed.
There are many highly effective metastatic breast cancer treatments.
With early-stage breast cancer, surgery and radiation are often recommended, since the cancer is limited to a specific area. But the most common treatments for metastatic breast cancer are systemic therapies, meaning they travel through the bloodstream and affect the entire body. This includes traditional oncology treatments like chemotherapy, as well as newer systemic treatments that can sometimes carry fewer serious side effects, because they do not harm healthy cells while they prevent cancer cells from multiplying. A key part of treatment for many people with metastatic breast cancer is anti-estrogen therapy, also known as hormonal therapy or endocrine therapy. Most breast cancers are hormone-receptor positive, meaning they “feed” off of the hormones estrogen or progesterone. Thus, therapies that inhibit the production of estrogen can prevent cancer cells from growing and multiplying. If your lab results indicate that your metastatic breast cancer is hormone-receptor positive, you may also be treated using CDK4/6 inhibitors, a groundbreaking type of targeted drug therapy that interferes with how cancer cells multiply and divide. On the other hand, if your biopsy reveals that you have HER2-positive (positive for a protein that makes cancer grow more quickly) or triple-negative breast cancer (meaning it lacks any of the receptors commonly found in breast cancer), you’ll benefit from different kinds of targeted drug therapies, or immunotherapy.
You might feel metastatic breast cancer in your bones.
The first signs of metastatic breast cancer might not be what you expect—you won’t necessarily notice a lump or pain in your breast, for instance. You might have no symptoms at all, or you might notice symptoms that seemingly have no connection to your breasts. For example, more than half of people diagnosed with MBC have bone metastasis, which happens when breast cancer spreads to sites like the spinal cord, ribs, and pelvis. That’s why one of the most common symptoms of metastatic breast cancer is back pain or other sudden, sharp bone pain that can mimic arthritis or post-workout aches. (If you have bone metastasis, your cancer care team may recommend targeting certain areas using radiation therapy, as well as incorporating bone-strengthening medications.) Some of the other most common symptoms of metastatic breast cancer include dizziness, fatigue, and weakness, chest pain, shortness of breath, nausea, jaundice, and weight loss.
Family history is not a huge factor when it comes to metastatic breast cancer.
One of the scariest things about metastatic breast cancer is that it can often seem to come out of the blue. For some people, an MBC diagnosis comes many years (or even decades) after a previous battle with early-stage breast cancer—long after cancer has disappeared in the rearview mirror. For others, MBC is the first cancer diagnosis they’ve ever gotten; they feel completely blindsided. And in most cases, there is actually no family history. While certain gene mutations (BRCA 1 and 2) can sharply increase an individual’s risk of developing breast cancer, and we’re all used to doctors delving into our family history, just 5 to 10 percent of breast cancer cases are hereditary. (Not sure about your own risk? The National Cancer Institute has an online breast-cancer risk assessment tool.) The most important takeaway: Self-exams and mammograms are crucial, no matter your health and family history. And spread the word that metastatic breast cancer deserves to get more attention and funding, so that people living with it have even more effective treatment options—and hopefully, eventually, a cure.
Petra Guglielmetti is a health, wellness, and beauty journalist who taps into a broad network of doctors, scientists, and medical experts to write in-depth service articles for leading publications like Glamour, Health, Real Simple, and Parents.
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Originally Appeared on Glamour