Having a strong support system around you can make living with cancer slightly easier. This is especially true when you’re living with metastatic breast cancer.
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One way to get some extra help is to explore palliative care, which is also known as palliative medicine. Although you might think this care is reserved only for people who are very sick, certified family nurse practitioner Annie Dickerson, MSN, FNP-C, ACHPN, stresses that’s not the case.
“Palliative care isn’t just for end of life,” she says. “And it’s not just for the time when your cancer has reached the metastatic stage. Palliative care is really symptom management. We’ll send you to palliative care if you need help with symptoms at any part of your cancer’s journey.”
What is palliative care for metastatic breast cancer?
While you might go to a hospital or doctor’s office to get palliative care for metastatic breast cancer, you can also get this care in a hospital.
Palliative care involves a whole team of people helping you. You’ll have a physician and advanced practice providers, such as an oncology team, as well as a nurse practitioner or a physician assistant you would see in the palliative care clinic.
“There’s also a team of social workers that can help with navigating challenges, as sometimes you have existential-type feelings that come up that might build up and cause stress,” Dickerson adds. “We also have art therapy and music therapy here, as well as access to chaplains and other spiritual care providers.”
Benefits of palliative care for metastatic breast cancer
If you have metastatic breast cancer, palliative care can be especially helpful even early on. “Palliative care is very holistic and comprehensive,” says Dickerson. “It can help you cope with your disease trajectory.”
Palliative care can help you:
Manage your cancer symptoms
First and foremost, palliative care can help you navigate and manage the symptoms of metastatic breast cancer. These can include:
- Decreased appetite.
- Sleeping concerns.
- A lack of energy.
Cope with the diagnosis
Being diagnosed with metastatic breast cancer can be an emotional roller coaster. Palliative care offers resources so you can take care of your mental health as well as your physical health. “This diagnosis can be really challenging,” Dickerson says. “Your life is often completely uprooted. Having that extra support from a psychologist or therapist is really important. They can also help you talk with your loved ones or help you cope with your diagnosis.”
Plan goals of care
A big component of palliative care for metastatic breast cancer is ensuring that your wishes are known. That includes having conversations about your goals of care. “Things discussed might be whether you would (or wouldn’t) want to go in the hospital at a certain point—or if you do (or don’t) want to go to the ICU,” Dickerson says. “It’s setting and managing the expectations for your care.”
Identify your support system
When thinking about your health, planning ahead and making sure your affairs are in order is never a bad idea. If you’re living with metastatic breast cancer, that’s extra important. “A big component of palliative medicine is making sure you have your advanced directives in place,” Dickerson says, “like a designated surrogate decision maker, who can act on your behalf if you’re unable to make healthcare decisions for yourself.”
Palliative care can also help you get a sense of the beneficial resources and services available to you, both via your healthcare provider and in the community. “We have social workers that are part of our team,” Dickerson says. “They’re usually a great starting point. And if you need additional support, the social worker can help us make appropriate referrals.”
Getting the most from palliative care for metastatic breast cancer
It’s understandable that you might be scared or anxious to explore enrolling in palliative care. Dickerson emphasizes that, at its core, palliative care provides an “extra layer of support” for the care you’re already receiving. To get the most out of it, she recommends:
Keeping an open mind
“If your provider refers you to palliative care, they probably had a good reason for doing so,” Dickerson says. “Listening to that recommendation — and having an open mind — is important. Many people shut down when a provider says they think something would be helpful and don’t go to those appointments.”
Following their advice
After you do go to palliative care, following recommendations and best practices from providers is also key. This is also crucial because palliative care is often working with you on managing your medications, including opiates.
“Your palliative care team is going to help defray or minimize your risk of taking opiates,” Dickerson says. “They’re going to make sure that you’re safe and provide you with resources to call if there’s a problem, or give you warning signs to look out for when taking your medications.”
Don’t be afraid to get palliative care early
Trying to deal with insurance benefits or making decisions about your life is overwhelming for anybody. Pile on cancer treatment on top of that, and it can be a recipe for a stress meltdown.
“Getting plugged in with palliative medicine early can ease your stress,” Dickerson explains. “There is a lot to navigate in this world. Having someone alongside you to say, ‘Let me help you navigate systems’ is so helpful.”
Plus, even though you might be living with metastatic breast cancer, you are more than your disease. Although you’re navigating pain and other symptoms, you’re still a person — you have things going on at home or work, hobbies you enjoy, and family and friends to hang out with. “Palliative medicine definitely helps with all of that,” Dickerson says.
Who needs palliative care for metastatic breast cancer
Dickerson says your primary oncology team will usually decide that palliative care might be a good idea. “For example, if you’re having symptoms that are too complicated for oncology to manage — or you’re having severe pain and you’re requiring large doses of opiates and other complementary medications —they might refer you to palliative medicine.”
Your oncology team also might not be trained to prescribe advanced medications for severe pain or help you manage the dosages, she adds. “That would be a time where your team might say, ‘We need the help of palliative care.'”
Dickerson adds that you don’t have to wait to be referred to palliative care, however. It’s perfectly okay to ask your doctor whether this might be a good option for you. “I’ve seen people who say, ‘I’ve heard about this thing called palliative medicine. Is this something that I would benefit from?'”
Hospice care vs. palliative care
Hospice care is considered palliative care. That’s because part of hospice is managing health symptoms as you’re nearing the end of your life. Generally, you might enter hospice care during the last six months of your life, although some people are in this care for a longer timeframe.
However, the opposite isn’t necessarily true: Entering palliative care doesn’t mean your health has taken a turn for the worse and you need hospice care. Instead, Dickerson terms palliative care as “an extra layer of support” for you and your oncology team.
“Sometimes when I bring up palliative medicine to someone, they’ll say, ‘Oh, I’m not ready for hospice,'” Dickerson says. “But a palliative medicine team is going to help you manage your symptoms wherever you are right now.”
Hospice care and palliative care are also provided by different people. “If you saw a palliative medicine team at a hospital campus, you might have a specific doctor and an advanced provider as part of an outpatient team,” Dickerson explains. “If you enrolled in hospice care, a different team would come to your house.”
Where can you get palliative care treatment?
Palliative care can be inpatient or outpatient. In fact, Dickerson says there’s even a palliative medicine at-home program. Juggling many appointments can be challenging, Dickerson acknowledges, although making time for palliative care is absolutely worth it.
“I often say that having metastatic cancer is like a full-time job,” Dickerson says. “You’re coming for treatment. You’re going for scans, going for labs, coming to appointments. Maybe you’re going to palliative medicine on top of whatever other appointments you have outside of the oncology world. Coping with this can be overwhelming — and palliative medicine can help with that.”