“It can be very overwhelming,” says Susan Glaser, a licensed senior clinical social worker and certified oncology social worker at Memorial Sloan Kettering Cancer Center in New York City. “You may have a whole host of emotions, including feeling angry, scared, stressed, depressed, disappointed, and demoralized. You may even feel all those things at once.” Although metastatic breast cancer can’t be cured, the number of women in the United States who are living with this advanced-stage breast cancer is increasing, in part because of better treatments. An estimated 168,000 women have metastatic breast cancer, three-quarters of whom had an initial diagnosis of an early-stage breast cancer. As you navigate life with metastatic breast cancer, there are things you can do to help feel more in control, including what Glaser calls living life large. Keep reading to learn how you can live better every day. “Do you want to educate yourself about the treatment, or would you rather not learn a lot about it?” asks Glaser. For some people, knowing a lot of details helps them feel in control; for others, all that information makes them anxious. “If that’s the case, you might want to seek out a paternalistic doctor, somebody who will just take care of you,” says Glaser. “Or maybe you want to hand over [your care] to a family member or a friend. Tell them, ‘You make the arrangements, and I’ll just show up.’” Still other people may deal with their cancer care very matter-of-factly, says Glaser. “They think, This is my new routine, and going to my treatment is just another activity that I have to attend to.” But for most people with metastatic breast cancer, the emotions are much more of a roller coaster. You may even switch in and out of different ways of handling them. The bottom line is that there isn’t a right or wrong way to deal with treatment. “Each person has to find what’s right for them,” Glaser says. Glaser offers some questions to ask yourself when selecting someone to accompany you to treatments or consultations.
Will this person be supportive?Will they be able to sit back when I need them to and allow me to speak?Will they be a good second pair of ears?Is their schedule flexible?
“Try to find a person who can come, be present, and be there for you,” says Glaser. “When you’ve missed what the doctor said or didn’t quite understand, you want to have someone there who has been listening or taking notes, not someone who says, ‘I’m not sure, either — I was checking my phone.’” You may not be able to bring your support person to all of your appointments because of Covid-19 concerns. In those cases, find out if you they can join virtually through FaceTime or Zoom, suggests BreastCancer.org. If that isn’t an option, ask your doctor if you can do a video or audio recording of the visit so you can review anything you may not remember or share the recording with your support team.
3. Communicate clearly with your care team.
If you have questions about your disease or treatment, don’t be afraid to ask. Similarly, if you have an opinion, don’t hesitate to share it. Glaser says, “You may tell your doctor, ‘I’m doing research on my type of cancer at home, and I’d like to share some journal articles I found with you. Would that be OK?’” Your care team should also understand what’s important to you in a larger sense so they can help. “If you have worked your entire life and now your goal is to travel,” says Glaser, “you should share that with your doctor or nurse.”
4. Make a plan to take care of the everyday aspects of life.
Grocery shopping, childcare, paying bills, figuring out medical insurance, and finding transportation for medical appointments are a few things you might need help managing while you’re undergoing cancer treatment. In addition to asking friends or family members, consider talking to an oncology social worker, who can lead you to available resources and help you work through emotional and practical challenges and potential solutions. If your health system employs navigators, they can also help coordinate your care. Bonus: Many people begin such a conversation by addressing concrete, practical issues and then wind up getting clarity on an emotional issue that comes up in the middle of it, says Glaser.
5. Seek the support you need.
Whether you speak to a therapist or a trusted friend or family member, having someone you can talk to and explore your feelings with is important, says Glaser. She also suggests trying a support group. “Support groups are chock-full of information,” says Glaser, adding that a metastatic breast cancer support group may be more helpful than a general breast cancer group. “You can learn a lot of valuable information in a group, but it’s a good idea to run any recommendations that you want to try by your doctor first — whether that’s a supplement, diet, or new exercise.” Many in-person groups have gone virtual during the pandemic. Online support groups can be more accessible to everyone, because they often eliminate potential barriers, such as transportation issues and childcare.
6. Be open to change, but trust yourself.
There are many positive changes you can make that impact your health and quality of life while living with metastatic breast cancer, including diet changes, exercising, or some other healthy habit. Says Glaser, “You might say, ‘I’ve never been an exercise person, but maybe I should try that to help with my aching bones.’” Your hospital or clinic may have nutrition and exercise resources and programs you could explore. On the flip side, you don’t have to follow every bit of advice that comes your way. Check in with yourself about what makes sense for your situation and what you’re willing to try. “If you meet someone who is a proponent of certain dietary practices and they tell you, ‘This is it! This is what you must eat or what you cannot eat,’ it can become a type of religion,” says Glaser. “Before you get on that bandwagon, check with your doctor.” Remember that everyone responds differently to treatment, she says, so don’t feel that it’s wrong for you to be on a certain medication because someone says that it didn’t work or caused a problem for them.
7. Be flexible.
“It can be very demoralizing when it feels that your life has become very small, that you’re living from doctor’s appointment to doctor’s appointment,” says Glaser. At times, you may have acute medical problems, debilitating symptoms, or treatment side effects that require most of your energy and attention. “Sometimes it can be really hard to do the activities you previously enjoyed,” she says. “You might think, I have bone pain, so I can’t go to the gym right now or I love to travel, but my weekly treatments make it hard for me to get away.” Rather than giving up the activities that make you happy, be willing to compromise. Maybe right now you can’t fly to another country for vacation, but you can visit college friends a few hours away, says Glaser. With the right mindset, that could be as rewarding as a big vacation. Not sure how to apply the notion of compromise to other areas of your life? Consider talking to an expert who can widen your perspective on what’s possible. For example, maybe you love spicy food but think it’s off limits on your diet plan. A nutritionist, Glaser says, may help you find other creative ways to boost the flavor of food.
8. Don’t live in the past.
This one might be difficult, but try not to live with regret. “It’s human nature to look for an explanation for your cancer,” says Glaser. “It’s a way to feel that you’re in control.” People tend to pinpoint stressful life situations or particular foods in their diet as possible culprits, says Glaser. They say to themselves, “Maybe if I didn’t smoke or marry that person or have that stressful job, then my cancer wouldn’t have spread.” Although these thoughts are normal, she adds, a better approach is to focus on what you can control now — in the present — and in the future.
9. Live large whenever possible.
Some people are born open-minded and live life to the fullest despite obstacles and adversity, says Glaser. “We all know people like that. When life throws lemons at them, they make lemonade.” But many of us are not naturally on that wavelength. When most people are first diagnosed, she says, they feel a real threat to both their life and their sense of hope. “At [Memorial Sloan Kettering], we talk a lot about learning to live large — to live life to the fullest possible while you’re being treated,” says Glaser. Her advice: Practice living more fully in the moment. “We encourage people to see this as a chronic situation rather than a terminal one,” she explains.
