Newly Diagnosed with MBC?

Learn what to expect, and how to prepare.

Getting a diagnosis

Metastatic breast cancer is when breast cancer cells spread from the breast to other organs like the bones, lungs, liver or brain and grow into tumors. These tumors can be seen on imaging tests (like a CT or PET scan), which is likely how you were diagnosed. Maybe you had early stage breast cancer in the past, and now you have been told that the cancer has spread to the bones, liver, or other organs. Alternatively, you could have been diagnosed stage 4 or metastatic without an earlier stage breast cancer. Either way, the cancer is still breast cancer (not liver or bone cancer). You might hear the terms “bone mets” or “liver mets,” which describes the organs the cancer has spread to. While there is currently no cure for MBC, there are many treatments to control the cancer and extend life, while maintaining quality of life.

Identifying your MBC subtype

One of the important things to know about MBC is the subtype, or receptor status. Subtype is based on the presence or absence of three protein molecules on your cancer cells. The three receptors are the estrogen receptor (ER), the progesterone receptor (PR), and HER2. For each, your cancer can be positive or negative, or in the case of HER2, there is an additional category called HER2-low or ultra-low. For cancers that are ER and/or PR positive, these cancers are sometimes also known as “hormone receptor positive” (HR+).

The presence or absence of these receptors leads to most MBC being characterized into four main groups: hormone receptor positive, HER2 negative (ER+ and/or PR+ HER2-); hormone receptor negative, HER2 positive (ER- PR- HER2+), triple positive (ER+ and/or PR+ HER2+), and triple negative (ER- PR- HER2-).  ER, PR and HER2 are also sometimes called “biomarkers”.

If you are unsure of your receptor status, you should ask your oncologist to share this information with you, as this is important to your treatment.

Deciding whether to tell others

It is up to you whether and/or when to tell others about your diagnosis. For many of us, telling loved ones is one of the hardest parts of this initial phase. Take your time and remember that who you tell and what you share is up to you, and depends on your personal situation.

Meeting your medical team

The first months of an MBC diagnosis are shocking and also filled with many appointments. You will have a medical oncologist for certain. This is the cancer doctor you will see most often, who will prescribe drugs, order scans and help you manage side effects. You may also have a radiation oncologist, which is a cancer doctor who specializes in zapping tumors with radiation. And you may see other specialists, depending on where your metastases are and whether they are causing you pain or other symptoms like shortness of breath.

No matter the doctor, it’s important that you discuss your needs and wants with them, and that they listen and treat you well. If they do not, it is more than ok to interview and find a doctor you do trust. It’s not uncommon for those with MBC to switch medical oncologists at least once. You may also get a second opinion from another doctor at a different institution, such as a university or another cancer center. If you are seeing an oncologist who treats all types of cancers, it can be a good idea to get a second opinion from one who specializes in breast cancer.

Another type of specialty that is important in your care is a palliative care specialist. This could be a doctor or nurse, but either way their job is to help you maintain the best quality of life possible. They can help you find counseling or other types of emotional support, manage side effects by prescribing drugs (or recommending your oncologist do so), or utilize other types of management like acupuncture or massage. These are generally very caring people whose only job is to help with your quality of life as you go through treatment.

Understanding your treatment options

Treatment for MBC is different for each person, for several reasons. First, cancer differs by subtype, as described above. Someone with hormone receptor positive, HER2 negative cancer may begin treatment with hormone therapy and a class of drugs known as CDK 4/6 inhibitors; whereas someone with hormone receptor negative, HER2 positive will likely begin with a drug known as Herceptin as well as a course of chemotherapy. Second, some cancers have specific mutations. For example, hormone receptor positive, HER2 negative cancer with a PIK3CA mutation may begin on a therapy of three drugs, while someone without this mutation may begin on a therapy of two different drugs.

Treatments are meant to control the cancer, while not overly diminishing quality of life. The amount of time treatments control the cancer and/or extend life differs person to person. However, your oncologist should be able to tell you the average amount of time people stay on the drug before their cancer progresses/grows. All treatments also come with side effects, so it’s important to ask your oncologist about these as well. Keep in mind that side effects also vary by person, and you will likely only get a certain subset of side effects, which can vary in severity. Additionally, you may have other health problems and specific needs that will affect treatment. It’s important to discuss these and your personal goals for treatment and quality of life with your doctor.

The main type of treatment used in MBC are “systemic treatments” or treatments that move throughout the body to kill cancer cells. Some treatments come in pill form (oral medicine), others as a shot, and others as an infusion (where medicine is introduced over time through an IV or port). Your healthcare provider should give you information on how your treatment(s) are administered and when.

Other types of treatments may also be used. For example, radiation may be used in a targeted fashion to control painful bone metastases. For those with hormone receptor positive MBC, surgery may be used to remove the ovaries, which produce estrogen.

Finally, and most importantly, you have a say in your treatment. As MBC patients we are (usually) on some type of treatment for the rest of our lives. When one treatment stops working, we move on to the next.

Undergoing scans

Scans help you and your doctor know if the cancer is responding to treatment. You’ve probably already had some CT and bone scans, or a PET scan. Scans are used to help diagnose MBC and then to track the disease as you start and continue treatment. Initially, you will likely have scans once every 3 months or so. If your cancer becomes more stable, scans may be pushed out to every six months or, rarely, longer. However, if you develop symptoms of the cancer such as bone pain or shortness of breath, scans may be ordered sooner.

Get Support

Joining a support group that connects you to other people who are living with MBC has many benefits. One option to start with is a Facebook group exclusively for individuals diagnosed with Stage IV metastatic breast cancer within the past 2 years (0–24 months). It offers a safe and supportive space to connect with others, share personal experiences, and learn about living with MBC.

Led by a team of experienced patient advocates who are also living with metastatic breast cancer, the group provides emotional support, helpful resources, and two monthly virtual meet-ups. Membership is focused on the needs of the newly diagnosed, with a unique “graduation” process to help members transition into the broader MBC support community after two years.

This group is designed to help those newly diagnosed with metastatic breast cancer feel supported and understood during the initial stages of adjusting to their diagnosis. If you are interested in joining this group, please click here to request access.

You can also search for an in-person METAvivor Peer-to-Peer support group near you – led for MBC patients, by MBC patients. There are also many additional options available to connect with peers and trained volunteers or navigators who can provide support and information.