A diagnosis of metastatic breast cancer can turn your world upside down; arming yourself with the knowledge of what to expect can alleviate some of the fears and anxieties, and can help you to regain control of what is to come.
In a webinar from the National Comprehensive Cancer Network (NCCN), Karen Lisa Smith, MD, MPH, Assistant Professor of Oncology, Johns Hopkins University School of Medicine, and Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG, University Distinguished Service Professor of Breast Cancer, Johns Hopkins University School of Medicine and nationally renowned breast cancer expert, discussed some key issues about metastatic breast cancer, including types of breast cancer and treatment decisions, advising women to ask their doctors for information about their prognosis, goals, and treatment decisions.
Ask Your Doctor
You shouldn’t assume that your doctor will raise issues that are important to you, or address all things that may concern you, so be assertive and bring up your questions yourself, Ms. Shockney suggested. Ask yourself how much you know about your breast cancer, and what more you would like to know.
Women may be confused about what is meant by metastatic breast cancer, including where it has spread to, how it can be managed, and what are the unique characteristics specific to your situation. How much do you want to know about your cancer? Some women prefer to get information just as things change over time, and it could be overwhelming to think too far down the road about metastatic cancer.
Ask yourself—what are you hoping for? A miracle cure? Good quality of life? More time to raise your children? To be without pain? What you hope for needs to be discussed with your doctor, and keep in mind that your answer is likely to change over time.
What are you most worried about? Rarely does a woman with stage IV (or metastatic) breast cancer say that she is worried about death; more often women are worried about the dying process, especially pain and suffering. We hope that this is far in the future, but it’s good to know that there are effective treatments that can manage your side effects and allow you to have good quality of life.
You may also be worried about finances, about who will help with your children’s upbringing if you can’t do it on your own, or how to plan for the future when your future feels so uncertain.
“If your doctor tells you these things don’t need to be talked about today, tell him or her that you want to discuss these things today,” said Ms. Shockney. “Avoidance of such discussions is not smart.” Also focus on things that bring you joy (spending time with your children, watching a gorgeous sunset), and communicate those to your care team so they can help you to best preserve them, she added.
Breast Cancer Markers
Breast cancer can be classified in different ways. Physicians describe cancer by the way the cells look under the microscope (ductal or lobular cancer), or by specific gene changes (mutations) in the cancer cells. They can also describe whether the cancer is related to a change in a specific gene that is inherited from your mother or father, such as BRCA1 or BRCA2.
“However, when it comes to treatment, the most important way that we classify breast cancer is to describe both the extent of disease and the markers (or receptors),” said Dr. Smith. “The extent of disease is a way of thinking about the amount of cancer and the goals of treatment.”
Breast cancer can be broadly grouped into early-stage and advanced-state (or metastatic) cancer. For metastatic breast cancer, it is important to consider what parts of the body are involved. Common sites of metastasis include the bones, lungs, liver, lymph nodes, and brain. But remember that when breast cancer has spread to the lungs or other parts, it is still classified as breast cancer.
Markers, or receptors, are proteins or genes that cancer cells may express. The 2 main markers (or receptors) are estrogen receptor (ER) and progesterone receptor (PR). These are receptors for the female hormones, which can attach to the receptors inside cancer cells and stimulate the growth of cancer.
A third important marker is HER2, which is found on the surface of cancer cells. If this receptor is turned on, it can cause cancer cells to grow and divide. Some breast cancer cells produce too much of it or have too many HER2 genes; these cancers are called HER2-positive breast cancer.
If a breast cancer doesn’t have the ER, PR, or HER2 markers, then it is called triple-negative breast cancer (or TNBC). Cancers that have ER, PR, or both are considered hormone receptor (HR)-positive. Women can have HR-positive and HER2-positive breast cancer. By classifying breast cancer this way, your oncologist can give you information about your prognosis and the best treatment for your type of cancer.
It is important for you to know that metastatic breast cancer is not likely to be cured. “However, in most cases, we are aiming to— and are often quite successful in achieving—long-term cancer control,” said Dr. Smith. “That is our general goal.”
Types of Treatment
The best way to figure out whether a treatment is working is with scans, which are usually done every 2 months. The results of your scans allow your oncologist to decide whether to continue with current treatment or try a different therapy.
Supportive care, which refers to the management of symptoms and treatment side effects, should be used throughout the treatment, because treatments should be tolerable in addition to being effective in fighting cancer. Today, many treatment options are available for metastatic breast cancer.
Systemic therapy. The main approach to treatment is systemic therapy, which is medication that targets the entire body, not just a specific area. Typically, one systemic therapy will be used after another, and each treatment is used for as long as it is working, and the side effects are not too troublesome.
“We consider a lot of different factors when we’re selecting each systemic therapy for each individual patient at each individual moment in time,” said Dr. Smith. The most important treatment factors are ER, PR, and HER2 status, which determine the type of treatment based on those receptors.
Chemotherapy. Chemotherapy is still the main treatment for people with TNBC. There are many different types of chemotherapy, and each chemotherapy drug can be used alone or in combination with other chemotherapies or other types of therapies.
Endocrine therapy and CDK4/6 & mTOR inhibitor. For HR-positive breast cancer, treatment usually begins with endocrine (anti-hormone) therapy. As a result of recent promising research, endocrine therapy is now often used in combination with targeted therapies (which target specific markers or receptors), such as a CDK4 or CDK6 inhibitor—including Ibrance (palbociclib), Kisqali (ribociclib), or Verzenio (abemaciclib)—and an mTOR inhibitor, such as Afinitor (everolimus). If HR-positive breast cancer is progressing despite anti-hormone therapy, chemotherapy can be used.
Chemo & targeted therapies. HER2-positive metastatic breast cancer is most often managed with a combination of chemotherapy and anti-HER2 targeted therapies, including Perjeta (pertuzumab) and Herceptin (trastuzumab). This combination has improved the duration of time that women are living with metastatic breast cancer, and in some cases has improved their quality of life, because the treatments are generally very well-tolerated.
PARP inhibitors. Many women with metastatic breast cancer don’t have the inherited BRCA1 or BRCA2 mutation, but for those with the mutation, the use of one of the targeted therapies called “PARP inhibitors”—Lynparza (olaparib) or Talzenna (Talazoparib)— can significantly prolong the time that the cancer is controlled.
This combination therapy can also be used in women with a BRCA mutation who have metastatic TNBC or those with HR-positive metastatic breast cancer for whom hormone therapy is not appropriate.
Making Treatment Decisions
“Keep in mind that physicians are taught to treat the disease,” said Ms. Shockney. “They have not been well-schooled in the past at asking patients what their goals of care are, so be your own patient advocate and bring this point up.”
Your oncologist may push you toward trying another available treatment, she added, but you should only do so if it meets your criteria for fulfilling your goals of treatment and goals of care.
“Ultimately, you need to be in charge of the decision,” Ms. Shockney said. “Make sure you are empowered with the information you need, to be able to actively and confidently participate in such decisions, so there are no regrets or confusion later.”
Also be clear on what your outof- pocket costs will be before agreeing to receive a specific drug treatment, she advised. There is a tendency for family members to tell their loved ones with cancer “not to worry about it.” Although well-meaning, they may not understand how large the bill may ultimately be, so make your own assessment.
If your family thinks the next drug is the “magic bullet,” try to avoid getting sucked into that thinking, too. “We all want you to have hope, but remember that hope is not a strategy,” Ms. Shockney concluded.
- Arming yourself with knowledge can help you to regain control of what is to come
- Be assertive with your doctor in having all your questions and concerns addressed
- Today, many treatment options are available for metastatic breast cancer, which can extend life for many years, but remember there are no “magic bullets”
- Ultimately, you are in charge of which type of treatment to pursue to make sure you’re empowered with information and consulting with your medical team
- Be clear on what your out-of-pocket costs will be before agreeing to receive a specific drug treatment