You Have Metastatic Breast Cancer: Now What?by Rachel Zohn Health Writer
There aren't enough words to describe what it feels like to learn that your breast cancer has spread. And with all those emotions rushing through your body, you can soon feel unmoored. We're here to help you find your anchor. We asked Pallav Mehta, M.D., an oncologist specializing in breast cancer, and Gregory Garber, an oncology social worker, to share their best advice for helping women cope with a diagnosis of metastatic breast cancer.
Take a Breath
You’ve just received a diagnosis of metastatic breast cancer—or you know you’re about to. “It’s a scary place,” says Gregory Garver, director of Oncology Support Services at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. “Just know that you’re not always going to feel as bad as you do at this moment.” The diagnosis isn’t a death sentence and you still have a future ahead of you.
Bring a Loved One to Appointments
If you’re going to see your doctor for what you know is an important conversation, bring someone with you to the appointment, advises Pallav Mehta, M.D., an oncologist specializing in breast cancer who is director of integrative oncology at the MD Anderson Cancer Center at Cooper in Camden, NJ. It’s hard to focus on what your doctor is saying when you’re facing a scary diagnosis. Having someone there who can take notes and ask questions is key to helping you through this first step, he says.
Record Your Appointment If You're Solo
Can’t arrange to have a support person at the appointment with you? Tell the doctor that you’d like to use your cell phone to record the conversation so you can refer to it later, Dr. Mehta suggests. If you’re struggling to process the news, you may not hear everything your doctor is telling you. “For a lot of women, the minute they get a diagnosis, the first thing that goes through their mind is their child, their husband or partner, and their family,” says Dr. Mehta. “They don’t really hear the conversation or retain the information.”
Stay Engaged With Your Health Care Team
Once you receive this diagnosis, your medical team will likely begin discussing the goals of your care and treatment options moving forward. It’s crucial that you are involved in this process and that you feel engaged and connected to those who are helping to manage your care, says Dr. Mehta. “It’s important for patients to understand that breast cancer has dozens of different subtypes.” Some forms of breast cancer are very aggressive, some progress much slower, he says. Write down your questions ahead of time so you can be sure to get the answers you need.
Watch Out for TMI (Too Much Information)
Your first instinct may be to turn to the internet to begin researching your condition or reaching out to others who have a similar diagnosis of metastatic breast cancer through message boards. Overwhelming yourself with information may not be helpful and may even add to your anxiety, Dr. Mehta says. “The ease with which patients can get info has been more detrimental to patients’ mental health than it’s been helpful,” Dr. Mehta says. “Partly because they get scared. Everything online is so scary when it comes to metastatic breast cancer.”
Understand That You Aren’t a Statistic
Dr. Mehta emphasizes to his patients that, while it’s important to arm yourself with information, you must also understand that every case is unique. “I tell them, ‘I’m sure you and your family have Googled everything and you’ve seen the statistics,” Dr. Mehta says. “But, stats apply to a population, not an individual. When you take a thousand women to come up with a number, all one thousand of them aren’t that number. There are some on each end.”
Activate Your Support System
Think about those who provide the most support in your life–these are the people you need to enlist early on to help you. “Many people feel it’s helpful to pick a core group, tell them what’s going on, and charge them with disseminating the info,” Garver says, “so that you don’t have to focus energy on retelling your story to people who are four degrees removed from you, which is exhausting and distressing.”
Stick to a Routine
Continue to engage in all the ordinary, basic tasks of life, Garver says. Stick to a healthy diet and sleep routine. “Make sure to do the stuff you do every day. This keeps some sense of normalcy,” Garver says. “Normalcy gives structure to our lives and provides a scaffold for some of our anxiety. When we throw out that structure on impulse, it creates a void that can lead to more anxiety. So even if it may be hard to function, it’s helpful to maintain routine.”
Avoid Rash Decisions or Sweeping Changes
Garver cautions from making “irreversible, life-changing decisions” when you receive a metastatic breast cancer diagnosis. Even an act such as overhauling your diet, while perhaps a healthy change in the long run, might lead to more anxiety in this moment. On a larger scale, you may be tempted to react by, say, quitting your job. But Garver urges that patients consider the financial or other implications of their decision, especially since they may be living with cancer for years to come. “Someone receives a diagnosis and they quit their job the next day,” he says. “Then it turns out that they tolerate their treatments better than expected. Now they’re bored at home with lots of time to think about their disease.”
Get Some Help at Work
Try talking to your employer’s human resources manager to inform yourself about modifications and allowances that can be made to your schedule, for instance. Work may be important in offering you a counterbalance to treatment. You may decide that going to work is a comforting routine and a place where you draw support and feel empowered. Or you may decide to come back to work on a limited basis or to take weeks off after surgery. Moreover, you should know your rights at work. The Family Leave and Medical Act mandates that you have 12 weeks unpaid time and that you come back to the same position or one that similar in responsibilities.
Remember That You Can Do Hard Things
Remind yourself that you are strong and resilient, says Garver. “You have lived through difficult things before,” he says. “Remember what has worked for you, whether it’s going for a walk or run or talking with a friend. Just about everyone has favorite pastimes and hobbies that make for good distractions. Remember to get back to them, Garver says. “When your life settles down a bit, try doing those things,” he says, whether it’s a pottery class, yoga or another kind of fun or gratifying pursuit.
Give Yourself Space
But keep in mind: you shouldn’t put pressure on yourself to feel better, Garver says. “You may need to allow time to get your footing again,” he adds. There isn’t a right way or wrong way to deal with anxiety and stress after learning you have metastatic breast cancer, he says. Look for support and see what works for you and helps you. The following websites, recommended by Garver and Dr. Mehta, offer lots of options for support groups for and information on metastatic breast cancer: Living Beyond Breast Cancer, Metavivor, BreastCancer.org, and Cancer Support Community.