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MyBCTeam members often celebrate finishing their initial chemotherapy regimens and beginning maintenance therapy. “Congrats on getting the chemo done!” offered one member to another. “The maintenance treatments go so much faster, and you’ll start getting more of your energy back.”
In HER2-positive breast cancer, cancer cells make large amounts of a protein called human epidermal growth factor receptor 2 (HER2). This type of breast cancer requires HER2 protein to continue growing. This makes HER2-positive breast cancer vulnerable to treatments that target this protein.
HER2-positive breast cancer has a high risk of recurrence (coming back) and metastasis (spreading to other parts of the body). This means it’s critical to stick with your maintenance therapy to get the best treatment results. Your breast cancer care team is there to support you through this important phase of treatment.
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Nurses on Your Care Team
People starting maintenance therapy for HER2-positive breast cancer naturally have questions. Read on to discover how long this phase of treatment will last and what to expect.
Maintenance therapy is treatment given after the cancer is gone to help stop it from coming back.
Initial treatment for HER2-positive breast cancer may include:
Regardless of your stage at diagnosis, your oncology care team will likely recommend starting maintenance therapy right after your initial treatment. Maintenance therapy may simply mean continuing one or two medications that you took for your first treatment.
The goal of maintenance therapy is to maintain remission — to prevent or delay the cancer’s return. Complete remission (also called complete response) means that after treatment, there is no evidence of cancer in the physical exam, blood test, or imaging. New targeted maintenance treatments have extended both progression-free survival (time until cancer worsens) and overall survival (how long a person lives after being diagnosed) even in people with metastatic HER2-positive breast cancer.
Sometimes, cancer reaches partial remission (partial response). This means that treatment reduced the tumor’s size or the cancer’s spread but didn’t kill all the cancer cells. In this case, maintenance therapy is also called “continuous therapy” because it’s used continuously to keep cancer from progressing. Another goal of continuous maintenance therapy is to reduce the use of chemotherapy.
Maintenance therapy for HER2-positive breast cancer usually means taking at least one targeted drug that blocks HER2 protein activity. The most common of these medications are trastuzumab (Herceptin) and pertuzumab (Perjeta). Both medications are anti-HER2 monoclonal antibodies. This is a type of laboratory-made protein that recognizes HER2 and stops it from sending growth signals to the cancer cells. Both drugs must be given via an intravenous (IV) infusion, which can take several hours.
These drugs are commonly combined. People taking both trastuzumab and pertuzumab may be recommended to transition to the combination therapy pertuzumab, trastuzumab, and hyaluronidase-zzxf (Phesgo), which is injected slowly and subcutaneously (under the skin).
Both infusions and injections need to be given by an oncology treatment nurse. This usually occurs at an infusion center, but sometimes a nurse can do the injection at your home. Both the IV and subcutaneous forms are typically given once every three weeks. Your oncology nurse can help answer questions related to treatment administration.
Some breast cancers that are positive for HER2 are also positive for proteins called hormone receptors. Hormone receptor-positive (HR-positive) cancers include estrogen receptor-positive and progesterone receptor-positive cancers. About half of HER2-positive breast cancers are also HR-positive.
Additional maintenance therapy options may be recommended for this HR-positive subgroup. These include neratinib (Nerlynx), a tyrosine kinase inhibitor pill taken once a day, and endocrine therapy, a hormone-targeted therapy given as a daily pill for five years or more. Endocrine therapy may be recommended instead of trastuzumab or combined with it.
Maintenance therapy is taken long term. But exactly how long depends on the severity or stage of your cancer.
For breast cancer in stages 0 through 3, maintenance treatment is usually given after chemotherapy such as paclitaxel. After the final dose of chemotherapy, maintenance therapy usually continues for another six months, for a total of 12 months.
A meta-analysis of five studies with more than 12,000 participants found that stopping trastuzumab maintenance therapy after one year was safer than stopping after six months. However, taking trastuzumab maintenance therapy for longer than one year was linked with an increased risk of damage to the heart. This is a rare but serious side effect of trastuzumab. Talk to your oncology care nurse if you have any concerns about your risk for heart problems during maintenance treatment.
According to the American Society of Clinical Oncology (ASCO) guidelines, maintenance therapy is a lifelong treatment for advanced or metastatic breast cancer. If the cancer progresses, you and your doctor will discuss switching treatments. If side effects become difficult to manage, talk to your oncology nurse about options.
To reduce the risk of congestive heart failure associated with trastuzumab, your doctor may want to do routine tests that check your heart function. This is especially important if you smoke or have a preexisting heart condition. If you’re taking certain endocrine therapies, which may contribute to bone loss, you may also need bone density testing. You can ask your nurse navigator for help scheduling this testing.
How often you’ll need to follow up with your doctor or oncology nurse depends on several factors. These include the stage of your cancer, what treatments you’re getting, and how well your cancer is responding.
A person in complete remission may continue to have follow-up visits with their oncologist or cancer care nurse. Yearly mammography is the only screening that ASCO and the American College of Physicians recommend for people in complete remission with no new or returning symptoms.
A person in partial remission or with new or returning symptoms of cancer will need more frequent follow-ups. Doctors will look for new or remaining tumors and determine where they are located and how they’re responding to treatment. People who have just completed treatments will also have more frequent follow-ups for the next five years.
Talk with your doctor or nurse if you have symptoms that suggest your cancer may have returned, such as:
The same types of tests used to initially diagnose HER2-positive breast cancer — such as imaging tests, blood tests for tumor markers, and biopsy — may be done to confirm whether the cancer is back. Always speak with your oncology care team about your symptoms, treatment side effects, and concerns. Your oncology care team can discuss your treatment options and work with you to decide on the best plan. If existing maintenance therapies aren’t working well for you, your oncologist may recommend you consider joining a clinical trial looking for new treatments.
On MyBCTeam, the social network for people with breast cancer and their loved ones, more than 77,000 members come together to ask questions, give advice, and share their stories with others who understand life with breast cancer.
Is maintenance therapy part of your HER2-positive breast cancer treatment plan? Has your medical oncology team talked to you about how long you’ll be on it? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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A MyBCTeam Member
I am on anastrozole for life as I am not only HER2+, but estrogen and progesterone as well. I finished chemotherapy and radiation, have gone back to work full-time, surprised everyone as I am 68… read more