While it may sound terrifying, however, there is hope.
“This isn’t an immediate death sentence,” says Stephen Malamud, MD, a medical oncologist and regional director of medical oncology at Nuvance Health Systems in Poughkeepsie, New York. “You’re not terminal. We’re going to be treating you — for years, in many cases.”
“So with the bad news,” Dr. Onger says, “there’s good news — and empowering information.”
Here is what else you need to know if you’ve been diagnosed with de novo metastatic breast cancer.
1. Wherever Breast Cancer Metastasizes, It’s Still Breast Cancer and Will Be Treated as Such
Breast cancer, if it travels to and lodges in another organ or part of the body, doesn’t transform into a different type of cancer. It’s still breast cancer.
2. The Cancer Cells That Have Spread May Differ From Those in the Original Tumor
“Cancer is devious,” Dr. Malamud says. The cells are known to mutate and adapt, often to evade treatment. “It can camouflage itself to hide from an immune system’s attack and it can mutate when it migrates in order to survive,” says Malamud.
That’s why you may hear your doctor talking about checking the biology of both the primary tumor (where the breast cancer started) and cells that have metastasized from it to see if the metastatic cells require a different approach to eradicate and control them.
3. Chemotherapy Isn’t Everyone’s Go-to-First Treatment Option
The word “chemotherapy” tends to scare people because of its reputation for harsh side effects. But in fact, Onger says, because this type of cancer is often sensitive to hormones, the “gold standard” in some cases is endocrine therapy (also known as hormone or anti-estrogen therapy), such as an aromatase inhibitor (AI), combined with ribociclib, a cyclin-dependent kinase (CDK) 4/6 inhibitor, which disrupts the function of enzymes in the cancer cell.
4. De Novo MBC Can’t Be Cured, but It Can Be Well Managed
“Think of this as a kind of chronic condition that you can live with for years,” Malamud says.
A growing array of treatments and approaches — “systemic” body-wide therapies and more narrow-gauged “local” therapies — can slow cancer’s growth and relieve symptoms and side effects, enabling people with de novo MBC to feel as healthy as they can for as long as possible.
The surprise for many, Malamud says, is that treatment plans themselves must be managed. “If we exhaust one therapy — it stops working — then we want to find another one that works, and another after that,” he explains. “And by ‘we’ I mean doctors and patients in ongoing dialogue and consultation.”
5. You Need a Doctor Who’s a Breast Cancer Specialist
In some hospitals, a single doctor may treat a variety of cancers. For de novo metastatic breast cancer, you’ll want a doctor who specializes in breast cancer.
Speak with primary care physicians, cancer care centers, local and regional medical centers and hospitals about recommendations. Also try the Find an Oncologist database of the American Society of Clinical Oncologists (ASCO).
“Look for a breast oncologist who will spend time answering your questions,” Onger says, “someone who repeatedly asks how you feel and really listens to what you say.”
6. Clinical Trials Are a Good Idea
“That’s how to access state-of-the-art care,” Onger says.
While in a clinical trial, Malamud notes, “You won’t be given a placebo — that’s a powerful misconception. Everyone in a clinical trial receives the standard of care, what we know works. Some participants then receive extra — whatever is being tested — to see whether it works better or, perhaps, with fewer side effects.”
Though eligibility requirements, inconvenient locations, and other barriers can make enrolling difficult, there are workarounds and ways in which people with de novo MBC can kickstart the process. Good places to start include ClinicalTrials.gov (U.S. National Library of Medicine), BreastCancerTrials.org, and the Susan G. Komen Metastatic Trial Search tool.
7. Genetic Counseling and Testing Is a Good Idea
“Understanding the tumor’s genetics can open up all sorts of targeted treatment options,” Malamud says. “And tests that indicate whether there’s an inherited genetic predisposition to breast cancer can help family members better understand and potentially reduce their own risk.”
8. Palliative Care for Pain and Symptom Management Is a Good Idea
“Palliative care isn’t hospice care,” Onger says. “We’re not talking about making people comfortable at the end of life.” Palliative care is designed to make people comfortable while undergoing treatment and coping with side effects of their disease and treatment. “We’re talking about extending and enhancing life,” Onger says.
Palliative care will vary with the location of the metastases and may include surgery or radiation to reduce tumor size and discomfort; medication, such as bone-strengthening drugs to lower the risk of fractures and stave off bone pain; nutritional and dietary changes; relaxation and stress-relieving techniques, such as meditation, journaling, and mindfulness practices; guided imagery and breath work; massages; acupuncture and other nondrug treatments for pain, and appropriate forms of exercise.
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