Living well with metastatic breast cancer

For many people, an automatic thought after a metastatic breast cancer diagnosis is that life is over. By no means is this true. While life expectancy after a metastatic breast cancer diagnosis is highly individual, research shows that people are now living longer after diagnosis. Some report that they are thriving with metastatic breast cancer, living lives that are active and fulfilling.

Some of the latest data on how long people are living with metastatic breast cancer were published in 2017, and treatments keep improving. “Looking at survival numbers in metastatic breast cancer is kind of like looking up in the night sky at the stars: you’re not really seeing the stars as they are today, but rather what they looked like however many years it took for light to travel to Earth,” says Pallav Mehta, MD, medical oncologist. “Most large-scale cancer registry databases are about 2 years behind. And then if we’re looking at 5-year survival numbers, we’re really looking at patients who were treated at least 7 years ago. Furthermore, if you look at a study from 2017, you’re looking at patients who were treated initially in 2010, which was before many treatment advances.”

Some of these advances include

• molecular biomarker testing, sometimes called genomic testing or next-generation sequencing
• CDK inhibitors, PIKC3A inhibitors, and mTOR inhibitors for estrogen receptor-positive metastatic breast cancer
• antibody-drug conjugates and immunotherapy for triple-negative metastatic breast cancer
• PARP inhibitors for BRCA1 and BRCA2 mutation-positive metastatic breast cancer
• targeted therapies such as pertuzumab (Perjeta), ado-trastuzumab emtansine (Kadcyla), fam-trastuzumab-deruxtecan-nxki (Enhertu), and tucatinib (Tukysa) for HER2-positive metastatic breast cancer

“The actual survival numbers are even better and continuing to improve,” says Dr. Mehta.

Many issues influence outcomes, including age, the presence of other illnesses, past treatments received, and the ability to carry out day-to-day activities – or what your doctor may call performance status. With so many factors in play, it can be challenging to feel a sense of control.

Remember that living well means different things to different people. Adjusting to a metastatic breast cancer diagnosis is an ongoing process. It takes time. When things feel uncertain, taking care of yourself physically and emotionally can help to preserve your sense of control and well-being.

Part of taking care of yourself is reaching out for support when you need it. Don’t hesitate to share any concerns with your doctor, nurse, or hospital social worker. Other sources of support can include family, friends, counselors, others living with metastatic breast cancer, nutritionists, complementary and integrative medicine practitioners, and spiritual leaders.

In this video, Don Dizon, MD, FACP, FASCO, shares guidance on ways to live well after a diagnosis. Topics include managing fear of progression, body image, parenting, and finances. Listen to an audio version of Dr. Dizon’s talk on living well with metastatic breast cancer.

Physical care

It’s possible to live a healthy life while living with metastatic breast cancer. Taking care of yourself physically includes a healthy diet and regular exercise. Benefits include:

• improving your quality of sleep
• strengthening your immune system
• increasing energy
• improving your outlook on life

While living a healthy lifestyle does not treat the cancer, it can provide a greater sense of well-being.

There are lots of ways to eat a healthy diet after a diagnosis. Nutritionist Stacy Kennedy, MPH, RD, LDN, CSO, advises people to follow a Mediterranean-style diet. This type of diet features a variety of foods rich in vitamins and nutrients, including:

• fruits and vegetables
• whole grains, such as whole wheat, quinoa, and oatmeal
• legumes, such as peas, beans, lentils, and chickpeas
• nuts

Understanding what a balanced plate looks like can also be helpful. Gwen Ryan, who lives with metastatic breast cancer, enrolled in a lifestyle program at Dana-Farber Cancer Institute to get more clarity on eating well. “I learned what a healthy plate should look like. One half should be colorful vegetables; the other half was split between a deck of cards worth of protein, healthy grains and carbs, and a little fat,” she says.

Regular exercise is also an important part of physical care. There are many ways to keep exercising after a metastatic breast cancer diagnosis, even if you need to make adjustments sometimes. Talk with your healthcare team about an exercise plan that works for you.

Emotional care

We know that a metastatic breast cancer diagnosis can trigger so many different and intense emotions. Shock, fear, anger, numbness, and grief are just some of the things people experience. Whatever you are feeling now will very likely change, and change again, as you move forward.

Some of the most common reactions to a diagnosis are anxiety and depression. Symptoms of anxiety and depression can include:

• restlessness
• trouble concentrating
• fatigue
• sadness
• difficulty sleeping
• loss of interest in favorite activities

Anxiety and depression can also be side effects of some breast cancer treatments, so talk to your healthcare team if you are having these feelings.

Emotionally adjusting to metastatic breast cancer is an ongoing process. Over time, you’ll discover new sources of support and develop new coping strategies. Pay attention to how you’re feeling. If you’re emotionally overwhelmed, let your doctor or hospital social worker know. Ask for a referral to a counselor or therapist, and ask about support groups where you can meet others living with metastatic breast cancer.

You can also connect with others on Living Beyond Breast Cancer’s social media communities:

• Facebook
• Instagram
• Twitter

Take time for yourself when you need it. Sometimes, you just want to rest. Other times, you may find support in practices such as mindfulness-based stress reduction, expressive writing, or other complementary and integrative therapies. These activities can help you:

• unplug from anxiety
• notice and take in positive experiences and people in your life
• develop an inner space of calm
• manage uncertainty
• be in the present moment

“While in the hospital, I learned mindfulness. Focusing on, ‘Can you not think about mets for 10 seconds? Can you picture yourself here in this moment?’ and ‘Can you think about what fall leaves smell like?’ Those were things I had cut myself off from in the land of depression. I didn’t want to experience joy at all. Allowing myself to feel those things again was so healing. At first, I thought mindfulness was hokey and absurd. But the power of intention [mindful thought] doesn’t mean I’m going to intend myself out of a terminal cancer diagnosis. It’s making the most of this moment.”— Kelli Davis, diagnosed with metastatic breast cancer in 2014

Managing both your physical and emotional health means you’re not just getting by with metastatic breast cancer. You’re living well.

In this video, Pallav K. Mehta, MD, explains the science of living well after a breast cancer diagnosis. Watch as Dr. Mehta shares guidance on nutrition, physical activity, and stress release.

Below you can find more information about living a healthy lifestyle with metastatic breast cancer, including guidance on eating well, exercise, emotional support, sexual intimacy, and fertility. You can also read personal stories from women who’ve been diagnosed.