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Palliative care offers a comprehensive network of support at any stage, from diagnosis to treatment and beyond
In times of trouble, we often turn to others for physical, mental and emotional support. And when it comes to receiving a diagnosis of metastatic breast cancer, nothing is perhaps more important than building the right kind of support network and healthcare team to help you on your journey of treatment and symptom management.
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Often, when people hear the words “palliative care,” there’s a common misconception that it’s only reserved for those who are very sick or dying. Sometimes, people mistake palliative care for hospice care. But in reality, palliative medicine specialist Nivia Ruiz, MD, says that palliative care is designed to enhance your quality of life at every step of your healthcare journey — from diagnosis to treatment and beyond.
“Palliative care can be considered at any point throughout your trajectory, even upon receiving a diagnosis,” explains Dr. Ruiz. “Hearing the word ‘cancer’ and having that diagnosis can be frightening. Not knowing where to start navigating through this journey may be overwhelming. Whether it’s with symptom management, psychological and social support, or spiritual support, by working with an interdisciplinary team, we can help you navigate this illness as best as possible so you don’t feel alone and feel like you have a support team alongside you through this journey.”
In fact, your palliative care team will try their best to improve your symptoms so your quality of life is also improved throughout your journey, whether you’re going through chemotherapy, having radiation treatment or any other treatment plan, or even forgoing treatment altogether.
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Dr. Ruiz explains just how palliative care can positively impact your journey after receiving a diagnosis of metastatic breast cancer.
You may have heard that sometimes it takes a village to raise a child. Palliative care takes that same approach but applies it to your overall quality of life when you have metastatic breast cancer. With palliative care, you have access to an entire team who can help you navigate nearly every aspect of your healthcare journey.
This team may include a physician and advanced practice providers, like an oncology team, as well as a nurse practitioner or a physician assistant. It can also include:
The overall goal of palliative care, while largely focusing on symptom management, is to provide you with enough relief and support that you feel your quality of life is not reduced after receiving a diagnosis of cancer.
“Palliative care works to improve your quality of life at any point. Even if you’re feeling well, it still carries an impact,” explains Dr. Ruiz. “Understanding who you are, what makes you an individual and what is important to you will help your palliative care team build a strategy to help you cope throughout your illness and help bring your family together to understand what is important to you. It is through an interdisciplinary team that palliative care tries their best at improving your quality of life, whatever that means to you.”
If you have metastatic breast cancer, palliative care can be especially helpful even early on — not just for you, but also for your family, your loved ones and your caregivers.
“We help families as well,” emphasizes Dr. Ruiz. “It’s not only about making sure you have quality of life and helping everyone cope, but also helping you have those difficult discussions with your family about where you are in your serious illness trajectory and helping them understand your wishes.”
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Even though your family and loved ones may not be the one with the cancer diagnosis, Dr. Ruiz notes that they’re going through this experience in a different way, with their own fears and anxieties — all things a palliative care team can assist with and make sure they’re being heard as well.
“Among these discussions, we can also guide you and your family on how to talk with your oncologist about treatment options and what to expect from your treatments, too,” she adds.
Here’s how you can expect to benefit from the palliative care experience.
First and foremost, palliative care can help you navigate and manage the symptoms of metastatic breast cancer. These can include:
“One of the best things you can do is work with your healthcare provider to try and manage your symptoms,” advises Dr. Ruiz. “Initially, for symptom management, you may feel overwhelmed by the amount of medication you’ll need to take. But once we’re able to help you manage your symptoms, we can start evaluating whatever we don’t need. And that gives people a greater sense of relief and feeling like they can manage this disease. That feeling of management is important throughout your entire illness.”
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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 often and especially ahead of time.
“You want to set and manage your expectations for your care,” says Dr. Ruiz. “It’s important to plan ahead in case things don’t go as we plan or hope. We help with answering questions about advance directives, make sure you’ve designated a healthcare decision maker and have those more difficult conversations when it’s appropriate and when you’re ready for it.”
If you’re living with metastatic breast cancer, you may want to think about what kind of support you need most. Often, a social worker is one of the first people you’re connected with as part of the palliative care process. Not only can they help with coping mechanisms, but they can also help connect you with financial assistance and other people living with cancer who can offer their insight and support as well.
“Social workers are trained to help you learn how to cope at any point throughout an illness,” explains Dr. Ruiz. “They can help patients with different techniques, such as psychotherapy and cognitive behavioral therapy, and they can connect patients to many other resources within the community.”
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You can also build your healthcare team how you choose. From spiritual providers and end-of-life doulas to additional therapeutic services like massage therapy, art therapy and music therapy — whatever you need most at this time of your life should be the focus of your care.
Understandably, you might be scared or anxious to explore enrolling in palliative care, especially if you’re still reeling after receiving your diagnosis. However you’re feeling, Dr. Ruiz emphasizes that, at its core, palliative care provides an extra layer of support for the care you’re already receiving. And if you’re not sure where to start, these areas may be an additional resource to help you learn how to cope with your new diagnosis:
“Focus on the ultimate goal you want for the rest of your life,” advises Dr. Ruiz. “You’re going to have good days, but when the not-so-good days come, as long as you’re focused on your goal, it can help get you through it. And if you’re not sure what to focus on, your palliative care team can help.”
For some, their goal is to finish treatment. For others, it’s to see a relative get married or to be there for when a grandbaby is born.
“Those are the moments you should focus on to help you get through those difficult times,” she adds. “If along the way, you recognize you need additional help or support, your palliative care team is there to assist you.”
Palliative care is designed to make the hard parts more manageable so you can try to get back to whatever it is you were doing before your diagnosis, whatever that looks like for you. Whether that’s going to the beach or reading a book, try to make time for yourself just to be grounded and understand where you are. You’re already going through so much, so it’s important to sometimes stop in the middle of everything and just be yourself, even if that means being by yourself.
“A lot of times, you can be so focused on treatment and just staying alive that you’re not living,” recognizes Dr. Ruiz. “That’s the part of stopping that’s so important: Making sure that you don’t forget who you are so that you continue to live, even through your treatments and your diagnosis.”
Often, people choose to continue working at their jobs or even pick up new jobs after receiving a diagnosis. Still, others choose to leave their jobs in place of more meaningful experiences elsewhere. The choice to continue working is a personal one, but it can offer a much-needed distraction and even inspiration and motivation if you’ve always been career-oriented.
“Listen to your body. If we’re able to manage your symptoms, and you feel good enough to go back to work or to continue working, go for it,” encourages Dr. Ruiz. “Your body will tell you if it needs more rest, if it needs to slow down or if you’re having too many symptoms. Listen to that, trust that and communicate how you’re feeling with your healthcare team.”
Clinical trials offer the opportunity to try new experimental approaches to treatment and assist in ongoing research. This might be an important option for you, particularly if all other options are no longer feasible.
“Some patients feel they need to try everything possible to say they tried it and they didn’t give up, and that’s OK to feel that way,” reassures Dr. Ruiz. “But if it’s going to be too much of a burden to get to the trial or even do the trial, then usually, the recommendation is to focus on the quality of your life as much as possible with the time that you have.”
Trying to deal with insurance benefits or making decisions about your life can be overwhelming for anybody. Pile 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,” says Dr. Ruiz. “There is a lot to navigate in this world. Having someone alongside you to say, ‘Let me help you navigate these 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 make room for all of those other important pieces in your life and helps assure you that you don’t have to carry this burden alone,” affirms Dr. Ruiz.
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