Nothing can prepare you for getting a diagnosis of metastatic breast cancer—the most advanced stage of breast cancer, in which the cancer has spread to other parts of the body. Upon hearing the news, it’s natural to feel many different emotions all at once: fear, anger, confusion, and devastation, for starters.
“In addition to patients’ concern about their survival and long-term prognosis, I think that patients are worried about their pain being controlled, their quality of life, [and] what aspect of their life they’re going to be able to continue,” says Amy Tiersten, MD, a hematologist and oncologist at the Mount Sinai Hospital in New York City.
While it’s true that metastatic breast cancer can’t be cured and is more difficult to treat than early-stage breast cancer, thanks to innovations in metastatic breast cancer treatment, patients are living longer and more “normal” lives than ever before.
“Metastatic breast cancer used to be considered a death sentence and that’s absolutely not true anymore,” says Dr. Tiersten. Learn more about this common metastatic breast cancer prognosis myth.
In fact, a study conducted by the National Cancer Institute found that the five-year survival rate among women initially diagnosed with metastatic breast cancer has doubled from 18% to 36% since 1994.
“Patients are living with the disease, in many cases for a long period of time,” says Dr. Tiersten. What’s more, these improved metastatic breast cancer treatment options not only extend a patient’s life, but improve the quality of it well. Here’s the most common misconceptions about metastatic breast cancer.
For many patients, doctors now think of metastatic breast cancer more like a chronic disease that needs ongoing management, like diabetes. “It’s not true in every single case, but many patients with metastatic breast cancer can live good quantity and quality of lives,” says Dr. Tiersten.
Managing metastatic breast cancer can require frequent testing and ongoing adjustment to your medication regimen. But making sure you take care of yourself and prioritize your own needs is important too. Here, Dr. Tiersten shares her best advice on what patients can do to better take care of their mind, body, and spirit as they cope with metastatic breast cancer.
1. Try to keep life as normal as possible. “I think it’s important to continue to do what you feel up to doing; keep your life as normal as possible [with] as little disruption as possible. That’s good for patients physically and psychologically,” says Dr. Tiersten.
2. Fight fatigue by keeping active. Fatigue is a very common symptom of metastatic breast cancer; it can come from cancer treatment or the cancer itself. While it’s important to listen to your body and rest when you need it, too much rest can lead to loss of body function, muscle weakness, and reduced range of motion. That’s why many cancer care teams encourage their patients to be physically active during cancer treatment.
“Exercising as much as possible is really important in helping alleviate some of the side effects of medication, and being active tends to give people more energy,” says Dr. Tiersten. Keeping active can also boost your mood and self-esteem, and improve your overall quality of life.
3. Advocate for yourself. “I think taking care of yourself is being able to ask other people for help,” says Dr. Tiersten. That means leaning on family and friends for support, or seeking out social work help, like seeing a psychologist or psychiatrist, if you need it.
Dr. Tiersten says it’s also important to educate yourself on all the treatment options available, so you can work with your doctor to find the regimen that fits your lifestyle and needs. “It’s great to take care of patients who are really participating in their care,” she says.
4. Try a support group. Joining a support group is a personal choice. It can be very helpful for some patients, and not so helpful for others. “Sometimes patients can find support groups very scary because the patient has a different story and a different type of breast cancer [than everyone else],” says Dr. Tiersten. “For some people it can be really hard, [but] others find tremendous comfort in sharing with other patients with a similar diagnosis.”
5. Use only reputable websites for research. “There’s so much scary stuff out there. I tell people if they’re going to go online, go to a reputable website like the National Cancer Institute or the American Society of Clinical Oncology,” says Dr. Tiersten.
6. Confide in your doctor. Finding an oncologist that you can talk openly to and who is a good listener is very important, says Dr. Tiersten. “It has to be someone that you’re really comfortable talking to about your fears, whatever side effects you might be uncomfortable talking about, [and] what alternative therapies you may be using,” she says. “Someone who listens to you without judgement, who’s able to support you, who’s able to alleviate some of your anxieties.”